Jillian Luna Litton

Friend Update

2008-06-26T13:18:00.000-07:00

For those who have been keeping up with this blog, you may remember a little 9 year-old boy named Aaron, who received a bone marrow transplant from his older brother, Adam a few months ago. Well, Aaron is doing great. Greater than great. That whole sibling match thing sure does seem to smooth the road......copy and paste the link below into your browser to a recent news story on Aaron:

http://cbs2.com/video/?id=70287@kcbs.dayport.com

Living and Loving Life!

2008-06-12T17:28:00.000-07:00

So, since my last (semi-final) entry, a lot of amazing things have happened. Our babysitter, Kristin (who will be attending Berkeley in the Fall!!), organized her cross-country team to take part in the Relay for Life at San Pedro High, a 24-hour walk/run to raise money for the American Cancer Society. She named the team, "Kids Giving Kids Hope" and dedicated the walk to her mom (a cancer survivor), Jillian, and Christian Hernandez (who, if you remember, was our roommate at one point.....you can see how he's doing at www.careforchristian.com). She had really cute shirts made with a pic of Jillian/Christian on them....we were so honored and touched that she went all out for us once again. (How can I raise my girls to turn out like her? Is there a book on this?). Anyway, our family came for the kickoff and did the "Survivor's Lap" which was very emotional. Jill was beaming, seeming proud to be wearing a medal and special beads, walking to music with everyone cheering her on the whole way. Anna seemed proud, too. We certainly were proud of both of them. At the end, a cancer-survivor (yay!) named Penni came up and asked me if I was Jillian's mom. She said that her 10 year-old daughter pointed Jill out during the lap ("Mom! That's her! That's Jillian!") as she recognized her from posters/flyers that were plastered all over Pedro during the time of the Bone Marrow Drive. She asked if we could introduce Jill to her daughter and take a picture with her. Melissa seemed pretty excited to meet Jill and Jill of course, didn't mind at all posing for a picture with a BIG GIRL (little girls ADORE big girls...it's so endearing). Penni asked if we'd be interested in joining her for the Relay next year. Her hope is to gather 24 San Pedro Cancer Survivors so that each person and his/her friends and family can do one hour of the 24 hour relay. I love the idea! There were a lot of other people that we reunited with at the Relay....other survivors/friends/people from the community. It was a beautiful experience.

Last Sunday, we were honored guests at a very special Baptist Church in Santa Ana. The Children's Choir Director of 34 years, Mrs. Karen Reid, saw us on the news in January and immediately called the hospital. They put her through to our room (much to her surprise) and we talked a bit. She asked what she and her church could do for us. Though I insisted we weren't in need of anything but well-wishes/prayers, she trekked out to our home (35 miles north) in a van with some of her children from choir (it was only Sunday I realized she brought kids with her!) and left a package on our porch (they thought we'd be home...unfortunately, we were still at Miller's). Inside was a big beautiful card that each and every child put a lot of work into, letters from her and the pastor, and a giant white teddy bear. I took a few pics of the girls appreciating the gift and sent them to Karen with a thank-you from Jillian. When we were discharged from the hospital, we talked and she invited us to come to the church on their annual Youth Day, which we gratefully did this past Sunday. The service was beautiful, powerful and moving. The people, from the moment we entered the parking lot were gracious and kind and so welcoming. There was so much boisterous singing and clapping, dancing, and calling out during the pastor's sermon and the skits put on by the children. Mrs. Karen put so much work into getting the service ready--it was impressive. Halfway through the service, the pastor invited our family to come up to the front of church (neither of us were planning on saying anything, but there we were). I delivered, somewhat nervously, a message of gratitude and hope and Matt told the story of how, very early in Jill's bout with cancer, Anna brought him her Children's Bible which we had only read with her a few times, and opened it to a story of Jesus healing a little dying girl. The short passage read, "Do not be afraid. She will be healed." (The whoops and hollers, "Hallelujiahs" and "Amens" that rang through the congregation at that moment were overwhelming and made us both teary-eyed). The pastor confirmed our belief and that of so many of our friends/family that God gives us nothing we can't handle and that He has a plan for our little Jillian. The service lasted almost 3 hours...towards the end, the girls were starving (bad planning on our part) and antsy, so Matt took them out, but I stayed till the end, joining everyone holding hands around the perimeter of the church....feeling like I was in a long-lost family member's living room, and prayed....and thanked God for the beautiful blessing that is our family and the health of every single one of us....and for all of the love and life that surrounds us....and on and on and on....and each member of my family left with the scent of so many "strangers" on our clothes...that scent that gets embedded into you from a REAL HUG....the scent of true compassion and caring and "I mean it when I say 'Come Back'". I think that feeling carried me through the entire next week.

During the week, I got to spend a lot of time with girlfriends. On Thursday, my friend Renee (the one that made us dinner almost every week for the entire period of time Jill was sick) invited us over for a playdate/lunch. Need I say how yummy lunch was? Nah.....you know that already. The conversation was the dessert :) We talked about so many things that are important to me right now....her perspective on things is really inspiring. She made me think things through a different way. I admire her strong convictions and appreciation of tradition and simplicity. That evening, I had coffee with a friend whom I haven't seen for nearly 3 years. I ran into her last week at a doctor's office and we immediately planned this meeting. She wasn't aware of Jill's cancer.....and I wasn't aware that her father had passed away last year at the age of 62. I remember an email from her stating that she was going back to St. Louis (where she is from, coincidentally) to be with her Dad when he was told he had approximately 6 months to live. She and her entire family (two boys, ages 5 and 3, and a six-month old girl, and a husband whose job allowed him to telecommute) took care of her parents during this immensely trying time. The story she told me, though, of her nephew.....and the connection to her father, gave me chills. 5 years ago, her nephew was diagnosed with a rare form of kidney cancer. It was very scary when they found his tumor, as it had apparently been growing since he was a baby. Susannah was visiting her nephew in another state when she picked him up and noticed his tummy felt hard. The only reason Susannah, my friend, had recognized his hardened tummy may have a tumor was because one of her sisters had just been diagnosed with a tumor in the fat cells of her stomach (shortly after having a baby) and described to her what it felt like (many doctors had already told Susannah's other sister, her nephew's mom, that this hardness was due to constipation). Susannah convinced her sister to pursue it further and not take "Oh it's nothing" for an answer, and thank god she did, because an MRI revealed a very aggressive and rapidly growing cancer. The family united, Susannah moved with her then one child to the state in which her nephew lived, and cared for him during his treatment, as both of his parents worked. She told me that one night, as they were all gathered to pray, her dad told God, "If You take this cancer away from my grandson, I would be more than willing to give my own life to You." The family is Mormon, and Susannah explained that her father was making a "covenant" with God. Her nephew is now 12 years old and in complete remission. 5 years TO THE DAY, her father passed away from the SAME KIND OF CANCER. We talked in depth about this. Did God take her father because of the "covenant" he made???? Would He really do that? And Why???? Her father certainly wasn't intending for that to be an empty promise, and what a marvelous thing to do....the biggest sacrifice he could've made, he did....but did he truly believe it would happen? And if he did, would he still have made that "bargain"? Susannah believes he believed in his heart that it would happen and that he was at peace when he died. I was so incredibly moved by this story and at a loss for words. There is less and less these days that I just "don't buy". It all makes sense, really, if you simply open your mind. I've become a lot less cynical since Jill getting cancer and a bigger believer in the Powers that Guide the Universe (sorry, Grandma, I mean "God"). By the way.......the sister that had cancer in her stomach had no treatment and the cancer vanished. But when her baby was 15 months old, she (the baby) was killed in a car accident. Ok, now I'm really confused. Was that "The Plan" too??? Just when I thought it was starting to make sense......I hope Susannah doesn't mind me sharing this story. I was just so impressed by her father and stunned by the gravity of the entire family's plight all around. And I believe stories should be shared. We all have them. As mundane as your life may seem some days, if you actually had time to sit and write down, or just TELL some of your stories, you'd be amazed at how quickly your book would write itself.

Which brings me to not being able to let this cancer-thing go. Lately, I feel that it has become almost a friend in that so many wonderful people and situations have become part of our lives because of it. I find myself mesmerized by articles/tv shows/and friends' stories about cancer. I was watching Oprah the other day and there was a woman by the name of Kris Carr talking about her experience with cancer after receiving news she had a very aggressive and incurable kind in 2003 (in her mid-20's!)....the docs all thought she'd for sure be dead by now. You can check her out at http://crazysexycancer.blogspot.com/. Please do....because, cancer or not, WOW is she inspiring. It's amazing what YOU YOURSELF can do to completely alter (in a good way) the course of YOUR OWN LIFE if you just BELIEVE YOU CAN. Cancer and me are skipping down the sidewalk hand in hand. We go knock on Matt's door, however, and HE's NOT HOME. Rather, he peeks out the keyhole and bolts the top lock. Matt's not having this "Read this/watch this" inspiring/depressing romance with cancer any longer. He's dropped it from his vocabulary. Which I respect. But I don't understand. How could he leave this soon? Am I weird? I think I'm weird. Would I be this in love with the notion of cancer and me being friends if it was slowly taking my baby away from me? Probably not. But it's not. We won.....and will continue to win as long as we're in a good head space....right? Maybe not. I don't know. It is what it is.

Okay, whew.....so today was the Champions Run for Life. Jill ran a very short distance with her magic wand and "frown" (crown) on and a whole lotta people cheering her on (thanks to Jannah, Cristina, Jamila, Jen, Michelle, Kevin, Kevin's Dad, Kristin and all the kids who stuck it out in the hot hot sun to support our family).
Thanks to Shahin (our dietician) for being Jill's sponsor and for all those who raised money to benefit the Children's Cancer Center. Thanks also (so much) to Michelle and Kevin, who had all of the guest at their daughters' dual birthday party last weekend, donate money to Miller's Hospital, in lieu of gifts for the girls. We were so touched by that. (Michelle said she did it because her kids have too much crap, but I believe there was a bit of humanitarianism in that sentiment). We plan to do this run every year from here on out. Next year we will be more prepared and will be hitting y'all up for $$ and presence.....so, well, don't say I never asked you for anything :)

Wow.....maybe I can't let this blog-thing go. I'm having a little bit o' fun journaling my life in public (and the lives of unsuspecting family members/friends.....don't tell me anything you don't want the world to know, at least not without a disclaimer). I need to do something. Something positive to help somebodies. I will start with pleading with all of you to spread the word about becoming a bone marrow donor (go to www.marrow.org) and banking newborn baby's umbilical cord blood!!! VERY IMPORTANT!! LIFE SAVING STUFF. If anyone has questions, leave a comment or email me.....I am happy to let you know what I know or do additional research for you. And don't think I'm going to shutup about this. You will be my bone marrow ambassadors. Everyone wins.

(Continued from last night)....Today is Father's Day. The girls helped me make Daddy breakfast in bed and presented him with homemade cards and little songs they made up. They then presented him with a diorama-like scene they made as a "hint" about his BIG present. When he couldn't guess what it was, Anna gave him a map and I explained that next Friday (I had asked him to take off work), we will be taking a train from LA to Santa Barbara where we will be staying a very fancy hotel on the beach and walking the 4 blocks from that hotel to the famous SB Zoo at least once...and to the cute little Farmer's Market 5 blocks the other way....no car....all weekend. He was very surprised! Yay, it worked!
Oh, and for those who don't already know.......we're having a boy!

Hopefully, he'll be a late talker.

We're open to name suggestions!

Semi-Final Entry (I think)

2008-05-26T20:32:00.001-07:00

We get up. We have breakfast. I clean. They play. We go to the park or on a walk. We come home. We have lunch. I clean. They play. I play with them. Jill naps. Anna pretends to nap until Jill's asleep then gets up and we do a craft or cook something. Jill wakes up. We go to dance class or music class or just hang around the house playing/reading/singing/dancing/dressing up. Daddy comes home. We have dinner. We clean up. I go to the grocery store or the gym. Or he does. Or we all stay home. Or walk. Or watch a movie. The girls take baths/have snack/brush teeth/read books/go to bed. Matt and I clean/read/watch tv/sometimes its a little more fun than that :). We go to bed.

Yawn. Boring. Mundane. Blah.

But would I trade it for our life from October through April? Are you kidding? I am so grateful for this humdrum life. So grateful to have 2 happy healthy children and an unborn baby who is no longer taking the life out of me (I'm finally over my nausea/exhaustion). So grateful to have a place to live, even without a backyard, an extra bedroom, and a flat safe street for my kids to ride their bikes on. One of my first thoughts on receiving Jill's diagnosis was losing our home. Losing our livelihood. Losing everything, not least of all, our child. But we're doing fine. More than fine, in fact....there is no need anymore. Unless Jill relapses, I don't see how we could possibly fall on our faces financially anymore. Thanks to so many generous giving people and their one-time or continuous contribution into our family's "getting through it" fund, we have not struggled one bit. Granted we cut back a lot on a lot of things...we never once felt desperate or even slightly lacking. We are amazed at how (now it seems) quickly and smoothly this horrible trauma passed.

Jillian is bright and sunny and dynamic and fun and powerful and beautiful and completely cancer-free. She got her Broviac (central line) removed on Friday....it's stunned me how many hoops we had to jump through to make that happen...first the consultation with the surgeon, then the massive paperwork, then the pre-registration at the Outpatient Surgery Center, then the day of the surgery and the waiting and the surgery itself (only about 20 minutes) and the 2 hour recovery after....seems a lot easier now having surgery as an inpatient! But it made it seem more real, more final....it wasn't just a quick little thing....it was a BIG DEAL to have this line removed. Granted, now, 3 days later, she got her entire chest wet for the first time since October 2nd! She can splash, she can play in water without us hovering "don't get your shirt wet!". We visited the tidepools on Saturday and she played with hermit crabs and starfish, dug for seashells, splashed her little tootsies in the warm warm water and got to be a huge sandy mess. It was glorious. I'm looking forward to the next warm spell we have (not too warm, though) so we can set up the kiddie pool and the sprinklers and she can don her funky bathing suit and be the happiest baby on the block! Pretty soon, we'll take her to the Y for open swim (it's a public pool, so we're being a little cautious) and she can be a fish again, like she was 2 months before her diagnosis. She has always been lively...even through all of this mess, but life is finally meeting her and taking her forward. I'm so happy. And so proud.

People ask, "So how is she doing? Is she completely cured?" and I say, "Well, she seems fine for now, but there is a 50% chance of relapse". This is what we've read/been told. Matt keeps telling me that he wishes I would stop saying that. That he wishes I could believe (as he strongly does) that it's NOT coming back. That she's all better and she's gonna stay all better. There is NOTHING to worry about. I wish I could have that attitude. But I'm not sure I ever will. She goes in on Wednesday for her first blood work-up since being discharged last month....it will be the longest she's gone off chemo, and I'm truly scared. We will have these appointments once a month for the next year and I'm pretty sure I'll be scared every time.

As for now, Anna is still going to preschool 2 days a week. I'll take her out in July/August and may enroll her in a gymnastics camp. We're very involved with the YMCA....the girls will both be doing tumbling/gymnastics there starting next week...Anna is finishing up soccer and will continue swim through the summer (I'll enroll Jill in swim for next month). Matt's sister and her son are coming to visit in early July. Matt and I are planning a short trip to St. Louis in early August. We're also going beach camping with a bunch of good friends in mid-August for a couple of days....something we've never done with kids! It's been a long time! Not sure I can sleep on the ground now that I'm pregnant, but I'll suck it up for the experience (that's what I say now...talk to me in 3 months!). We ARE going to find out the new baby's gender (our wonderful and sweet next door neighbor is an ultrasound tech and has offered to take us into to her office this Saturday, so hopefully the baby will cooperate!). I will return to work (at 3 days/wk) in September then will take maternity leave from Oct-Jan (or so). I'm hoping to start Anna in a new preschool (LAUNCH) in the fall (if I can work out where she'll be 3 afternoons a week when I'm at work). Jill will go back to her daycare lady, Rose, for the month of September and will probably continue there when I return to work after the baby is born, for the rest of the school year, along with the baby. We love Rose, she's so great. We've been seeing her once a week or so since Jill's been home to go on walks with her and the handful of kids she watches...Jill has missed them...today, our entire family joined Rose and a whole gaggle of kids (some of whom are too old now for "daycare" but whose schools were closed for Memorial Day, and whose parents had to work) for a fun walk and chalk drawing adventure. How she keeps everybody happy and safe, even crossing busy streets, blows me away!

For those who don't already know, Sat June 14th is the Torch Run for kids battling cancer and survivors and their families/friends.....it is actually a big fundraiser for the Jonathan Jacques Children's Cancer Center in Long Beach. We are planning to go run with our little survivor and party with the doctors/nurses/friends we've met along the way at the carnival afterwards. We would love it so much if you, our friends and family, could be there to celebrate with us. Email or call me for details.

So, I guess this is pretty much it. I will be posting updates every so often, I guess, following JIll's appointments or big events (like the run), but my guess is that this blog will just fizzle out. At least, I hope it keeps a reason to. I can't thank each and every one of you enough for your love and support throughout this time. Even without family living close, we still felt like we belonged to a huge extended family....one that refused to let us fall. From the meals to the babysitting to the visits to the gift cards....no deed was insignificant and none will ever be forgotten. I hope you feel good about what you did for our family and that you know what a difference you made to us. In helping us bear this burden, you made it bearable. It seems like such a blink of an eye now. Such a short period of time. Such a poof! and it's gone. I can't believe she did it. That we did it. It has certainly made me stronger and more confident and helped me to realize what really is important. I still firmly believe that God felt we needed this...for some reason. To teach us something...to teach others something. I pray every day (and wish upon countless stars) that cancer is not a word we will need to utter in our house any longer. That the mission is completely completed and that the next big challenge will be how to get through the first 3 months of a newborn, a 2 and 4 year old without losing my friggin' mind. I welcome that challenge. So, thank you again for keeping us in your hearts and making this dream a reality. And maybe if everyone believes....(as Cinderella says) "The dreams that you wish, will come true."

And then, we woke up.......

2008-04-28T12:56:00.000-07:00

Mom to Jillian : "Do you have poop in your diaper?"
Jillian: " 'I don't think so', said Prince Eric."

She is now narrating her own story, speaking in 3rd person...AS herself. Anna says, "Jillian! Put that down! It's not yours!" Jillian replies, very matter-of-factly, " 'You were not playing with it so I can have it if I want to', says Ari-la (Ariel).' "

Did I mention we're home??? I know I haven't....so many have emailed or called lately, "I thought you might be home, but I haven't heard.....I'm assuming your home....are you home?" I apologize for not putting this, the biggest news of the past 7 months, out there, but in all the excitement (and the miserable heat of our first weekend back...maybe we should've stuck it out in the nice, air-conditioned hospital for 2 more days!), I have not gotten around to this.

Jill's last day at Miller's was Friday. The nurses and Child Life people on staff that day were all so loving and sweet and wonderful to us....they sang Jillian a cute little song "Hi Ho! Hi Ho! It's off to home she goes!" written by Rose Marie, and presented her with many terrific presents. One of Jill's favorite night nurses dropped off a fun care package, complete with funky sparkly camoflauge bathing suit "I tan do simming at the YMCA!!!!" It was a very happy (and kind of sad) day. Matt, especially after being there for 3 weeks straight, was almost hesitant to leave. He said he felt "institutionalized" and has said a number of times since we've been home, how much he misses the nurses.

So, I feel like I should say something profound, but this doesn't seem real yet. She went home on NO medications (after spending 7 months on 3 daily antibiotics). The only thing we have to do for her medically is to flush her central line with heparin once a day, cover it with plastic when giving her a bath, and to change the dressing covering the line and the caps once a week. It's like, she's nearly a normal kid! We have our first clinic appt on Wednesday, where she will get labs drawn (a lot of blood, to check for leukemia cells, red blood cells, and platelets...she could still need an infusion or two over the next few weeks) and the last bone marrow biopsy and lumbar puncture will be scheduled (outpatient) to make sure the leukemia cells are staying away. As soon as that is completed, we can schedule the outpatient surgery to remove the line. And THEN, I think, this will all seem real. The site will take 3-4 weeks to completely heal, so it looks like I have 2 more months to get bathing suit ready (HA!!!! Wait! Did I say, "HA!"???) At least she's as cute as she is....ain't no one gonna notice my big butt. Whatever. Perspective. That's what I've gained. Perspective. So little of what I really thought mattered before, really does. It's GREAT!

So, yeah, she's been walking around talking like this: "Oh no! Where's my water?? said Belle!" Seriously. It's a little scary (scripting? No.......she's way too social for me to worried about THAT). But I'll leave you with one other funny little story. As we were driving home from the hospital, I looked over my shoulder at her and said, "What do you see out your window?" She looked out the corner of her eye at me and smirked, "Don't tell me what to do." I said, aghast, "I wasn't telling you! I was asking!" She said, smug as I've ever seen her, "Well, I'm not listening. You can fweak out if you want to."

I'm so happy our little girl is home with us for good (knock on wood, say a Hail Mary, throw some pixie dust up in the air), I just might fweak out.

On the Upswing

2008-04-19T16:28:00.000-07:00

Jilly has an ANC, doo-dah! doo-dah!
Jilly has an ANC, oh, doo-dah-dey!!!!

Jillian's Absolute Neutrophil Count (the part of the WBC that we really care about) is 300!!!! I'm thankin' the neupogin shot...the one we were pretty sure we'd never try. Every cycle so far has shown that once she hits a 2 digit number, she's up to 500 within 3 days. We would go home at 500, but for the fact that she's still not eating, has a bit of eye irritation that they haven't figured out, complaints of her head hurting, and the need to redo the chest xray for the third time to rule out any fungus or other infection. The doctor has ordered an MRI of her head (about the only part of her body that hasn't been scanned so far) to rule out anything in the skull/brain/neck. That makes me feel relieved as it would be terrible to go home only to come back in 3 weeks with a brain tumor.....may sound extreme, but it happens.

So, today, I came to the hospital with Anna. The Team in Training and Hike for Discovery Teams (marathoners/hikers who work incredibly hard raising money to benefit the Leukemia/ Lymphoma Society) came to visit (thanks for organizing that Alyce...the girls loved their balloons and little gifts). Matt then took Anna home to rest for awhile. He'll be back tonight to spend the night....and every night until she goes home (as there is very little chance I'd get any sleep here with all of the beeping and Matt can sleep through a lot more than I can...trust me, it's better for everyone involved if I'm rested :). Jill and I played for a good 3 hours. She's still a lot of fun, but very testy and argumentative a lot of the time. "No you can't touch my castle! It's MINE!" "Leave me alone! Go away!" She's doing a lot of throwing things out of her bed just so other people can't touch them, or hold them, or (God forBID!) look at them. She told one of the nurses today, very matter of factly, after the nurse made a comment on how cute Jillian looked in a picture, "Don't you talk about my picture. You can't see it. You can't have it. Go away." I think she's really sick of people just bothering her...asking her to pose for pictures (she hates that) or give them hugs or even say goodbye. I told her to stop picking the skin off her lips today (they are very dry no matter how much chapstick we apply) and she says EXACTLY these words, "Don't tell me what to do. I can do whatever I want." DANG! Don't get me wrong, she's still sweet and happy and fun to be around MOST of the time, but the baby's fed up. Can you blame her?

Please keep in your prayers/thoughts the family of an 18 year-old named T.J. He was diagnosed about 3 months ago with Embryonic Carcinoma. He's had this cancer since he was in the womb, but something triggered it and it flared up fast and horribly. When he came in, it was Stage 4. He is now in a coma..the cancer has spread throughout his body, and into his brain...he is dying. His parents, Jon and Susan, are two of the most kind and gentle people I've ever met. When Susan told me how T.J. was doing yesterday (and only because I asked), I could not hold back the tears. She and her husband both tried to comfort me by talking about how Jillian had perked up and was doing so much better. Susan apologized a number of times for making me feel bad...she said I didn't need to hear this given our circumstances with Jill. They are very strong people with a solid group of friends and family supporting them, but what a nightmare. T.J. is their only child.

Bad News/ Good News

2008-04-18T02:37:00.001-07:00

It's 2:30 am and I just had to stop working on the girls' room. My Dad and I have been sanding/painting the doors/frames/trim/walls for the past 3 days. It's almost done but difficult to move the furniture by myself. There are still many little things that will have to be left undone as I was kind of counting on my Dad to help with them and he left today (4 days before the original planned date) with my Mom. I'm very sad about the circumstances around them leaving.....just a lot of tension and stress between my Dad and I. I won't go into it publicly because that wouldn't be fair to him, but I'd be lying if I said that everything is fine right now. I'm miserable because I can't see my baby still and very hurt that my parents left early.

We all went to see her Wednesday night....I wore a mask because I still have a little sore throat. Matt was tense the whole time I was there for obvious reasons. He didn't want me there but knew I had to see her. I was very careful, but also felt guilty for being there. It was so great to see her. She perked up so much when we all came in. She held onto me for so long......tried to kiss me, but I backed away...that was so hard. She really enjoyed hanging out with Grandma and Grampa (even pooped all over Grampa to show how much she cared). My parents gave the girls gifts from people back home....a plastic horse and 2 homemade cuddly blankets (they both loved them). Jill looked sick to me. Like she'd been through a wind tunnel. Puffy eyes, pale skin, lots of little bruises and rashes all over. She was just finishing up a platelet infusion (she's been getting them a lot lately, so if you can, please go to Millers and donate directly to her.....you need to be prescreened in person and can donate 4 days after that, so a lot of people are getting prescreened and giving blood on the same day, then coming back to give platelets....call me with questions about it). She has an NG tube in, but they stopped feedings because she was throwing up too much. She was sort of herself....playing and pretending and smiling, but she just looked so tired and worn. It was so wonderful to see her, but I think it made it harder to leave.

Today started out crappy....she woke up with a high fever (she's still on Tylenol and Trilisate every 4-5 hours to keep the fever down) and threw up. In so doing, she dislodged her NG tube and they had to take it out. The good news is that she ate a good lunch (maybe Daddy telling her they'd be putting the tube back in if she didn't eat, helped) and at 8pm tonight, Matt reported that she had been sleeping (fever free!!) for 8 hours. This is the longest she's gone without Tylenol since nearly 2 weeks ago. The doctors were starting to worry about her liver as her liver function tests were showing slightly elevated (something?) from all the Tylenol, so I am so happy that it looks like it may be going away. I'll write more when I know more.

(For those that knew about it, we cancelled the girls' Baptism...it was supposed to be today at the hospital, but Jill likely would've slept right through it, and we didn't want to put her through anything more....I would not have been able to be there either due to my sore throat. We'll reschedule it for when she's home).

Nobody Knows

2008-04-12T22:36:00.000-07:00

One week later and our baby still has a fever. They don't know why. Another chest xray was done this morning to rule out something growing in her lungs. She's getting continuous oxygen to keep her saturation up (when she'll tolerate it). They started giving her little doses of morphine, which actually makes her feel well enough to play for short periods of time. But most of the time, she sleeps. The Infectious Disease doc (I have to get his/her name, Matt really likes this doctor) recommended we start Jillian on an intensive anti-fungal treatment protocol. Our HemOnc doc is hesitant because it is very hard on the kidneys and could make Jill feel a lot worse (is that possible???). They ran some more tests today, but won't get the results for another 5 days on whether she has this particularly scary fungus, Asperilligus (sp?). If we wait 5 days and she DOES have it, we may have waited too long, but if we start her on the regimen, it could down her immunity even more. They decided as a team (Matt included) to start her on ONE of the anti-fungal drugs as a prophylactic measure....this one requires pre-medication with Benadryl and Tylenol as many people are allergic to it, and continuous monitoring of her blood pressure, temp, and O2 saturation as all of these systems may be affected. How much more could her little 2 year-old body be put through??? Really??? For the record, the docs told Matt today that 60% of the time, kids will have a fever for a very long time and before they figure out what it really causing it, it goes away. Though everyone is on top of things there in HemOnc (Matt is thoroughly impressed at the moment with the quality of nursing and physician care Jill is receiving), no one seems ultra-concerned that things are haywire right now. This is apparently par for the course this late in the chemo game. One of the nurses told me the other day when I was dropping off clothes/food for Matt (and I was sobbing because I miss my Jilly so much), that she now looks like a kid with AML. "She's been such a firecracker!" the nurse said...."You guys just weren't expecting this crash....but this is what it really looks like. Some kids have these kind of results every time they come in for treatment. You've been lucky so far...."

I feel like I'm reporting from outside the prison walls without having a glimpse of my prisoners....my only contact is via phone. I still have a bit of a sore throat and my cough is nearly gone, but not quite. Anna may be getting sick...she asked to leave a party early tonight because her tummy hurt (she ate nearly nothing all day...very unlike her). Matt appears to be holding up pretty well....there is nowhere else he'd rather be, I know that. He is doing the only job that means anything to him right now, and that is being ever-present to his beautiful girl....whatever she needs, however much, however long. Matt is Jillian's Prince. Anna & I miss him dearly. I have so much love and admiration for him...more than ever now. We both know it is best this way. He is where he should be, and so am I.

I can't help but imagine what it would be like if Jill's Daddy was anyone else....if he was skiddish, or tentative, or scared enough to not be able to pull this off without making me worry about his mental state or capabilities. Matt is so unwaveringly strong and solid and certain that his presence and deep and firmly planted love for his little baby doll are all that she needs to get her through this dark time. His knowing she'll be okay (and telling me over and over that we only have a little over 2 weeks left--"in a perfect world," I have to add), gives me hope she really will be. When I am cynical, he is sure. When I doubt, he believes. When I fall apart, he builds me back up. I wish everyone could know the love I have for this man. I've always told him, since Anna was born, that I am so glad he's the daddy to my children. There couldn't be anyone better.

Thank you Phil and Lisa for your recent visits. If anyone else is interested in stopping by (even with Jill sick, Matt appreciates one visit a day....keeps him connected to the outside world), let me know and I'll get you in touch with him. I hope to back to the hospital soon. But I need to be 100% before I go. My Mom & Dad arrive tomorrow but won't go to the hospital until Wednesday (barring illness). I will keep updating the blog as I get new info.

Tests and Procedures and Shots, Oh My!

2008-04-10T12:17:00.000-07:00

Jill did okay last night...had some energy, even, and was playing a little. Our friend Sandra was over for a visit and Jill said she wanted to eat pizza. So Sandra ran out to Pizza Hut and got her one (now, that's service!) and she had a piece and a half. Yay! At 5 in the morning, after being off her Tylenol schedule for a total of only one hour, her fever shot up to 103. The nurse rushed in with Trilisite and as Matt was giving it to her (half asleep and worried), she started gagging....this dropped her oxygen saturation to 92 (it's supposed to be 98-100), but it stayed there for a little bit, so they gave her oxygen and then did a chest xray (no one gives ME a chest xray when I choke on my peas..it's not FAIR...sadistic humor...I'm tired...'splain later). Her fever remains under control with lots of medication and she's doing great, energy wise, all things considered today (it's 12:30 and Matt says she's been playing most of the day, and eating a little).

On the agenda today are:
1) Platelets (3 hour infusion)
2) NG Tube placement to prep her for GI Scan
3) GI Scan
4) CT Scan of her head/sinuses to rule of fungal mass

They also started her on Neupogin (sp?) shots last night. This shot to her thigh (it's a small needle...little stick) should encourage her WBCs to come back quicker. We haven't done this in the past because it gets your ANC (Absolute Neutrophil Count) to 500 only, on average, 3 days sooner, and it has NOT been proven NOT to encourage leukemia cell growth....although it hasn't been proven TO do that, either, so many doctors are on the fence about it. It's also something we will have to give her every day from now on until she gets back up to a normal WBC count (we may have to continue these for up to 4 weeks after we leave the hospital...Matt's making ME do them....why do I always have to be the bad guy???) We felt that with her being so sick and having such a long way to go being immuno-suppressed, it is worth the risk. But we really have no idea what we're doing. Maybe we should've stopped at Round 4 and signed her out AMA. Hedged our bets? I'd hate to see her survive leukemia only to be thrown into a whole other world of organ system failure and transplant. Chemo kills. Everything. Hmmmm....that's a good idea for a shirt......

So, your job is to pray (hope/wish) they don't find anything. I'll keep you posted.

I'm tired because I couldn't sleep last night...don't know why....so I peeled wallpaper off of the girls' bedroom walls from 11:30-6:00 am (it was some very stubborn glue...rrrrrrgh). Slept a bit this morning while my poor neglected 4 year-old was watching Dumbo and various other shows on Noggin (hey, "it's like preschool on tv"...that's their slogan...so I felt much better....I'm sure she learned a lot).

Recent Pics

2008-04-09T20:08:00.000-07:00

Discovery Arts day 3 weeks ago in her flapper dress.

On her short visit home between chemos 5 & 6 playing in the grassy area above Trump Golf Course.

Donning her Gabriella garb from the vonStentzsch gals. She was the most hilarious I've ever seen her this day (about 2 weeks ago).

With good friends, Makaiya, Keona, and mommy Tanya.

The Fight Continues....

2008-04-09T19:45:00.000-07:00

Okay, so Jill's fever has not completely gone away yet...it has gone up and down, but never gotten below 99 (and that was only a few times...always on Tylenol and another fever-reducing drug, Trilisite). The Infectious Disease docs have been consulting with Matt...they want to run tests tomorrow (a CT Scan & MRI among some other bloodwork) to determine if she has a fungal infection somewhere as she does not seem to be responding to the Vancomycin. Just to fill you in, she has been taking 3 antibiotics, orally, every day (or just about) since Oct 4th (Penicillin, Diflucan, and Bactrim). She also has antibiotic eye drops while on chemo and a stool softener when she needs it. When she gets a fever, they immediately start her on 3 new (and hard on the kidneys/liver) antibiotics by IV (Cefapime, Tobramycin, and Vancomycin). She sucked some of the top layer of skin off her thumb over the last few days (yep, she's still a thumb sucker...and we do NOTHING to discourage it as it's one of her few comforts). The docs said that it probably is worse than it looks as with no WBCs, the skin won't get swollen and red like it should. So, they've started her on a 6th antibiotic (they stop the Penicillin when she goes on the IV antibiotics) called Flagyl to fight fungus as a preventative measure. They will start her on a 7th IV antibiotic if her tests come back showing a fungal infection somewhere in her body (this one is VERY hard on the kidneys, which is why they will wait for the tests to come back positive). She has had pretty bad tummy issues since starting all of these drugs (#1 side effect of antibiotics). She is on fluids, including some dextrose (sugar) and will be starting to get boluses of nutrition through her IV as she refuses to eat. Despite a burst of energy or two in the past few days, she has been down most of today. She perked up a little around 6pm for a bit right after receiving Trilisite (Matt has talked the doctor into writing a more liberal order for this drug as its administration has preceded her "good moments" and the doctor seems to think that its side effects are not too bad). Please please please keep her in your thoughts and prayers. We are very worried about her right now.

The move went smoothly. I don't think Matt had to do too much (but pack everything into 2 big suitcases...and care for a very sick baby for 6 full days on his OWN....God, I love you). He reports that our new (private) room (thanks, Jill) is spacious and "beautiful" (how backwards is our perspective these days if we're referring to a hospital room as "beautiful"????). It has lots of windows and overlooks a pretty garden. I hope Jillian appreciates being able to see the sky.

I miss her like you would not believe. I will go to the doctor on Friday, even though I'm sure she will tell me, "Yep, you have a sore throat...deal with it"....but I want to make sure it's not strep just in case. I want to go back there so badly.....I actually miss being there. I'm starting to forget her face!

Anna is doing wonderful. She misses Daddy (constantly reminding me that, though she loves me too, she loves Daddy more because "he's just so CUTE"...honestly, she has the biggest crush on him!!), but we've been having a really good time. I'm so much more relaxed not having anything to do!!!! Trust me, I've gotten a lot done with the time I've had here, but I'm not stressed about it. These are projects that have been sitting for 6 months....no rush to finish them. Yet I am. I need to stop watching tv, though....that's holding me back. (I'm addicted to reality tv....have you seen the "Bad Girls Club" on Oxygen? What a complete waste of time!! I LOVE it!!). If anyone has "The Good Earth" or whatever that Oprah book is and wouldn't mind lending it to me, I'd love to borrow it. I will try & borrow it from the library, but am pretty sure there's a waiting list a mile long. Thank you Dina for taking Anna all day Thursday...she had so much fun with her best boyfriend James, as usual. Renee, thanks again for the lasagna....I shared it with Dina & my neighbor Karen last night and everyone raved! And Jannah/John/Barb, thanks for taking Anna to Legoland today (the hours of absolute freedom were--still are--so precious). Barb, thanks for buying the girls pink swords. Give 'em weapons and go home....that's what Grandmas do best (hee hee). I'm taking Anna to the Discovery Science Center tomorrow. I'm sure we'll have a blast.....I'm getting over the guilty feeling.....but I still miss my baby.

Sickies All Around

2008-04-07T15:15:00.000-07:00

Here's the update....Jill's fever seems to be under control but still present. They found gram-positive bacteria growing in her blood samples....bacterial infections are to be expected when kids go neutropenic (no white blood cells), hence the raging fever and nausea/diarrhea....and it is good that the bacteria is gram-positive because that means the antibiotics she's on should treat it. So Matt has been with her since Friday night as on Saturday, I started getting a sore throat. I definitely have one now...and a cough...so I will not be going to the hospital until it clears. Matt is taking off the entire week (sin pay....thank you generous donors for making this possible) and I am staying home to rest/recover and (because I can't help it and it needs to be done) cleaning/organizing. Anna will go to school M/W/F this week and to Dina's T/Th (thank you Dina!). If you would like to see Jill (she should be over the really yucky stuff in the next few days) or possibly give Matt a little break (if he'll take one), give him a call at 310-846-7254.

I sent out 2 videos of Jilly recently on Vimeo. If for some reason, you didn't get them or could not view them, let me know. I'm just learning all of this.

Fever

2008-04-05T21:18:00.000-07:00

Jill came down with a fever this morning. It has been up and down all day and she won't eat anything. I talked to Matt at 9pm and it was over 104. I freaked out because I've heard of kids losing the fight to chemo.....sometimes that wiping out of your immune system over and over is what gets you....not the cancer. This cannot happen now. She has been doing so great. I cried, I called my parents, I felt so desperate and anxious and guilty for not spending time with her today (Anna has a little cough so we're staying away from the hospital, and she and I had a lot of fun today going to the park for bike riding, the beach for treasure-collecting, out to lunch, out for ice cream, the bank, where she deposited my checks for me, step by step, the UPS store, the grocery store, Lakeshore, where I used her "modeling" gift certificates that were about to expire...she got a Magician's Kit, a Bug Vaccuum, a Bug Terrarium and a phonics game....then to dinner, then to IKEA....).........and I've been so lazy with Jill lately. Just trying to get through the days awake without tripping over her or myself. I still feel crappy with this pregnancy. Her fever came down to 101.4 around 9:15. Matt's really upset with the nursing staff we had today regarding her getting medicated properly for this. He feels her fever would have been much better controlled had the nurses been more on top of things. Whether it's miscommunication or forgetfulness brought on by being given too much to remember or them simply not thinking what we think is important is really important, we find ourselves (as maybe we should expect?) doing a lot of nursing our child to health on our own. I am certainly not speaking of all the nurses....there are a handful we completely trust with Jill's life. We just unfortunately don't always have access to them. So, Matt will be checking Jill's temp every half hour or so all night (he said her temp went from 100.4 to 104.2 in a matter of 20 minutes...the nurse wasn't due to check her for another 2 hours...if he hadn't caught it, what could've happened????). I feel like my worry will keep me up here at home right along with him.

Please keep Jill in the forefront of your thoughts from now until I report she's back to her normal self. Ready.....GO.

Beautiful Day

2008-04-01T23:00:00.000-07:00

So Jillian is on top of the world. Her energy is through the roof. Her attitude couldn't be better. She is the brightest, shiniest, most sparkliest ray of light I've ever ever ever seen. Despite not being able to open her eyes this morning (she is extremely sensitive to light right now because the chemo they gave her this last time was 10 times the strength of any before....and it was poisonous enough to begin with), she plowed through her breakfast opening her mouth wide like a baby bird and turning her head to where she thought the fork with the scrambled eggs may be coming in for a landing. She would reach both hands out in front of her, cupped, and try to grab her glass, which wasn't on her tray, then frown at me (with eyes squeezed shut) and say, "Where my tup doh?" And I'd place it in her hands, and she'd gulp it down, slam it on the tray..."Thanks mom!" After an hour or so (and some eyedrops, and some tylenol), she pryed them open and proceeded to have a helluva day in the hallway....trying on dress after dress, making up very elaborate dances, storming up to random strangers, taking their hands and leading them on an adventure to the jungle, the ocean, the palace.....

A most touching thing happened tonight....a mom and dad were in the hallway right outside of our room. The mom was crying and the dad was trying to comfort her. Jill pranced out of her room (right next door) holding her Gabriella and Troy dollies. She looked up at this mom and said (I'm not kidding), "You look like you need something. Here", and she thrust Gabriella into mom's hand. The mom wiped her tears, smiled, and said thank you....Jill was already on her way down the hall. A few minutes later, the dad came up to me and asked if we would come into his son's room so he could meet Jilly. I happily escorted her in there.....he is 17, very frail, with an NG tube, eyes wide open, trying to talk, but can't....trying to smile, but having a really hard time....I said, "Jilly, say hi." She blew him a kiss, then tucked her chubby forearm under her chin and cocked her head to the side (this is how she does it...she blows one then catches one). He tried very hard to lift his arm, but couldn't...he managed to lift a few fingers and one corner of his mouth turned up. I left the room with Jill feeling like I was carrying a guardian angel. I really really believe that she brings light to this place. People (new people) are constantly sticking their heads out of their rooms wondering "who is making all that joyful noise?" They can't believe she is only 2. And that she's "sick". I can't either. I can't either.

Thank you Renee and Kate for coming to visit tonight....for the books (Renee....Jill loves them...she wanted to pretend she was all the animals too), the citrus!!!, and mostly, the Kung Pao Chicken :) No, mostly for the company. It meant a lot to me that you came. I know it's rare you get a night free.

Congratulations a million times over to my good friend, Shaana, who passed her Doctorate Program and just submitted her dissertation....revised and completed. We may now call her "Dr. Berman"!!! Yippeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!! If she stays at Launch next year (and all goes as planned), she will be Anna's new preschool teacher.

If anyone knows anyone who could watch Anna in the afternoons (3 days a week 12-4, in the Torrance/Lomita area) starting in September....a college kid, a neighbor who stays home with her kids & could use extra cash, an established home daycare.....please let me know. My wheels are turnin' about what to do for next year......going back to work/etc/etc.......

The Difference a Day Makes

2008-03-31T00:16:00.000-07:00

...and a caring group of doctors and nurses....

So, the day after my hissy fit in the hallway, the medical team came in for rounds and told me they were getting us our own room. It wouldn't be guaranteed for any length of time, but they did some shuffling around and freed a room because they knew how it may well lift the gloom that was hanging over me. (Not Jill, ME.) By the way (a sidenote! Ha! Isn't this entire blog supposed to be about Jill???).....Jill is doing amazing!!! She finished her chemo on Friday. Finished. Done. Over with. No waning appetite this time (quite the contrary)...no nauseousness (yet), no rashes, no fevers. She has exploded through this final phase with guns ablazin'. She is our solid gold dancer. Our hoop and holler and shout "Alleluia! That baby got things under CONTROL." She has been a ball of freaky fun (even during the party like a rockstar night we had when I almost lost my mind). Her last chemo was administered as a shot in her thigh....she let out a little whimper and it was done. The nurse who gave it to her was way more nervous than Jill was. Jill even thanked her when it was over and told her she did a good job. Does this girl have any flaws????

Tonight, my good friend Tanya and her 7 and 9 year-old beauty queen daughters Makaiya & Keona (Kaiya & KiKi, for short) came to dazzle Jill with their presence/presents (Troy and Gabriella dolls and the coolest ever dress up outfit Jill has ever ever tried on...I will post a picture as soon as I get them uploaded....slinky red dress, dangling silver earrings & necklace, ruby slippers--borrowed from her own box--and ruby red glittery-rimmed glasses....HILARIOUS....no, what made it really hilarious was the dancing....I almost forgot the glittery silver microphone she held right up in her grill while she shook that booty like it wasn't fastened on! Ha! Man I wish I could figure out how to easily upload a video so everyone could see this crazy child in action!! She's a sight to behold...costume or not....). She had us all in stitches.

It was so great to have friends out...they made the time go by so fast (man, did we have fun!). Jill totally looks up to her "more mature" girlfriends and Tanya was so playful with her too! It delights me that people take so much interest in Jill....she's kind of hard to ignore, I guess :) She's so dang smart too! She said something about "srying" tonight...which I knew was "crying", but I wanted to show her off to Tanya (when I act like I don't know what she's saying, she finds a way to get it through somehow)...so I said, "what do you mean, 'sry'?" Here I thought she'd say, "Like this...(and make a crying sound)"....but she delved into this big explanation..."You know, 'sry'...lite when I dit a bonkey (I say "bonk" whenever she hurts herself) and Dr. Salo says, 'You otay? Lemme put a bandaid on nat.' And I say, 'Owwie! Dat hurts!' Den I sry." And tonight as she was falling asleep, I recited "Goodnight Moon" to her and I got all the way to the end "goodnight noises everywhere" and she said, "And doodnight toyhouse....you didn't say dat." And I said, "Yes I did....didn't I?" (I could've sworn I did) And she said, "No....(and she sits up...looking pensive, like she needs to be sure)....no, you didn't. You need to say 'doodnight house and doodnight mouse'." And then I remembered...I DID leave that part out. Wow. Wow. Where did she come from and why do I get her? Needless to say, I am grateful.

Our friend Lisa came out on Saturday and brought pizza for the girls and then made strawberry shortcake with them (with sprinkles!!) and played POGS (remember pogs??) and with felt cutouts and watched one of the myriad of movies she brought....all while Matt & I went to dinner at Outback (thanks Sonia!!). Neither of our children even looked up when we left (or returned)....just goes to show how much Lisa means to them. Thank you Lisa.

So many people have called or emailed to try and offer a little rescue to us in our (my?) time of need. Thank you. Thank you for your good wishes and plans to visit/stay with Jill (especially overnight...that is really big....and we know just how much). Every little thing means a lot....we would be nowhere without every single one of you. Can't wait to see so many friends this week!!

Adjusting, but keep reading...need help....

2008-03-27T16:02:00.000-07:00

So, I'm sitting in the hallway at 4pm right next to boxes of our things and Jill (sleeping!) in her crib under the bright flourescent lights and people tramp tramp tramping up and down the hallway. (That girl could sleep through a football game in the middle of the field!). We are here because they are moving us to a bed by the window that is currently vacant (which means I'll get some sleep tonight!), but it hasn't yet been cleaned and the room we are moving out of is packed with people (a doctor and teaching nurse and interpreter who are explaining cancer to the new family of a one year-0ld. I feel for them, but don't want to listen to the "this is what your life will be like for the next _____ months" schpiel again). Matt moved us in last night with Jill (by himself--thank you thank you thank you) into a shared room on an A side (yuk!) and though our neighbors are as nice as they can be, I couldn't pass up the chance to get a little more privacy. We will likely stay in that room until either a) Jill gets a fever, which is expected with every treatment, but which I'm certainly hoping doesn't happen--she would then be in an isolated room, which would mean nobody in and nobody out or b) April 9th rolls around and this whole unit moves to a different wing of the hospital (due to the construction) and then we're still sharing, but the rooms are bigger & more private (with DVD players!), so really....we're set. Depending on who moves in, of course.....but at least Jill is a sound sleeper and I'll just practice wearing earplugs (or an iPod) more often. There are always ways to adapt. We'll work it out. It's almost over. It's almost over.

Thanks to all those who emailed me to say that I have every right to feel crappy and that I shouldn't apologize for complaining. Your words made me feel better. So it DID count for something and I wasn't irritated because you were trying. Okay, so now I have to pee again for the 16th time today (seriously...16...and it's only 4). Just wanted to let everyone know that I haven't done anything too crazy (yet) and that I'm still so happy for all of the support. Here's a few specifics:

Thank you Renee for hosting our Girls Night at your house (the Breakfast at Tiffany's Theme was priceless) and to all the girls who came to share their love and laughter...I needed that. Thank you Jen M. for the sweet care package you left at our door (Jill loves the mini-Cinderella set the mostest!). Thanks Karen for the Easter surprise you left on our porch (it feels like Christmas every day! I'm saving your goodies for a boring day at the hospital when I have them both). Thanks to Jen F. for the table/chairs (they've come in super handy already), the EXCELLENT dinner/lunch/dinner (that was a LOT of food!) and the bag of fun goodies for the girls.....they are still exploring. It was great to see you and Katie! Renee, thanks for making us such a wonderful 3 course meal (again!). The homemade (need I even SAY that....do you buy ANYTHING???) strawberry shortcake (ok, well, I guess you didn't officially "make" the strawberries) was freaking AWESOME. I'm dreaming about it right now......must call Matt and tell him that I noted a component in such shortcake that he is allergic to so he will not eat the rest while I'm here (heh-heh....sly smile....). Dina, thank you for taking Anna today....for meeting us at the curb and for not being at all offended by my quick dump and run (my alarm didn't go off). Thank you to Kristi & Ian for the munchies care package...you didn't have to mail it! Geez! I could've easily picked it up from you....but thank you so much....I'm on my 2nd package of nutter butters right now (and the baby is already thanking me for his/her early onset diabetes).
8 hours later..........
So that room switch really wasn't such a great idea. Our roommate tonight, though very friendly and social....is very friendly and social. And she had her entire senior class (it seemed) in our room tonight for a few hours. As soon as we got to move in (and Jill, unfortunately, woke up from her nap, giving me not a wink), they moved this chick in and it was a party! all! night! Hard Rock blaring from the computer (check out this cool riff!), 16 Candles blaring from the tv (Long Duck Dong! So Funny!!!!), so many bodies I had to (try and) politely ask them to move every single time I needed to get to something on her side (the sink, the cabinets with the washcloths, to door to escape). I lost it in the hallway...just broke down to my night nurse....I can't do this. I'll sleep on the floor in the hallway.....they tried to come up with solutions....we could move you here/there, but you're trading one crappy situation for another. I'm just spent. I'm done. How many times have I said that? I'm done? I can't be done. Who am I kidding? Every single day (and I mean this), I fantasize jumping in my car and just driving......driving.....up to the Redwoods....up the rocky Oregon coast.....ahhhhhhhhh.....fresh air, sunlight, quiet......no one needing a damn thing from me. Oh, yeah, except that baby in my tummy. What could I do about that? Welp, back to square one. Nothing to do but stay here and suffer. Enough with the "think positive" mantra. It ain't flyin'. I KNOW it's almost over. Don't SAY it again! I need help though, I really do. Just as I thought things were dying down over there on the A side (I even asked her to turn off her lights, which she did with slight protest), a relative of hers comes in at midnight (I had gotten, I think, a half hour total of decent sleep at that point)....lights on! speaking voices on! movement on! door open! Granted, she did shush this person, which I appreciated, and when I shuffled back in the room from the hallway port-o-potty (eeeeewwwww) and asked (without crying! look at me!) how long the lights would be on, they graciously said they were sorry and would be going to sleep in a minute, too....I said I was sorry for being bitchy...they kindly informed me it was no problem....am I really this person????? Matt has offered (kind, dutiful soldier) to take over every night. But what would THAT be like? Work/hospital/work/hospital....times 5? And no Anna all week (or rather, from Anna's point of view, no Daddy all week)?????

So here we go....I ask again (and like I say to God about Jill's cancer not coming back, if you do this for me I promise I won't ever ask for anything ever again!!!!!): would you please, if you can, help us? One more time???? We need volunteers to come up here (I've learned that very few of you have any daytime hours available) around or shortly after dinnertime (5/6) and stay the eve/overnight....to be relieved (on weekday mornings) by 8am (earlier if you need). If you can do this, please let me know as soon as possible. Jill is very adaptable....she is doing fine.....may be a little tired/sick from the chemo over the next few days, but after that (knock on wood), I think we'll be free and clear (but stuck in this place with no way out). I'm going crazy people. I seriously am losing my mind. Whatever you can do would be so appreciated.

Nothing Nice to Say

2008-03-25T11:00:00.000-07:00

My Mom always told me (maybe she heard it from your mom) that if you don't have anything nice to say, don't say anything at all. Well, maybe that is why I haven't written anything in awhile. I haven't been feeling well due to the pregnancy. Physically and emotionally, I'm just extremely tired. I know the end is in sight, but I'm dreading this last month, feeling nauseous all the time and like someone slipped something in my drink (I could fall asleep just about anywhere, anytime). The girls fight...and I mean, knock down-drag out fights....about 80% of the time, and I'm just drained. I've gotten pretty good at completely ignoring their squabbles, but sometimes someone really gets hurt or one of them is REALLY doing something she should NOT be doing and I have to step in...so I feel like I'm correcting/ordering/scolding constantly. I'm not exercising and I'm eating junk because I'm too tired to prepare healthy, so body image is a big ugly thing...and it's only getting worse. I wish I could be excited about having another baby. Right now, I'm just trying to imagine how in God's name I will do this. So anyway, if I haven't returned your calls or called you to chat because you're my friend and that's what friends do....this is why. I'm down. I feel like I've been down this whole second half....I want to be the person from the first half....the person who had hope and who found lessons in every little thing. Ha. That didn't last long did it? Not that I don't have great joyful moments, they're just fewer and further between now. If I don't seem like myself when I see you in person, well, I'm not, and I'm sorry for that. We go back to the hospital on Wednesday night for one more month. It's only a month. But it's a month. 30 days with no privacy, having to dart out to the dirty disgusting hallway bathroom every 5 minutes, cuz that's how much I have to pee and I can't use the bathroom in our room when we're sharing one. 30 days of monotony....Jill flitting from one mundane, repetitive activity to another because SHE'S bored too. Chasing a cooped up little wild woman up and down the halls, fretting that she's gonna pull her line out because lately, she's just erratic in her movements and thinks its funny to push the limits as far as they'll go (don't blame her, but how can I keep up now?). Smelling the familiar and now nauseating smells of that awful food. Dealing with the varied personalities of so many doctors, nurses, parents, kids, and not being able to escape and hide (like I feel I'm doing now from even people I like). Having to keep that smile pasted on my face while I'm in the hallway with Jill and everyone is constantly walking by smiling at her and me and commenting on how "cute/funny/smart" she is....because if I don't, I get that look of concern and "what's wrong? how are you feeling?" 20 times a day. And what do I say to that? "I'm fine"????? "Oh nothing"????? "I'm miserable and want this nightmare to be over"????? Okay. And what does the nice volunteer/staff/parent who's going through the same hell say to that? "Oh honey, I'm sorry. It'll be okay. It's almost over?" No, I really don't want to hear that. Because that I know. It doesn't help. Not that I don't appreciate the concern, but you have no idea what I personally am going through. Easy for you to say. You swap places with me and do it for a week and watch how fast you sink. Ugh.....I'm sorry. I mean well, I just don't know how to be that way right now. Maybe just telling everyone I'm fine and saying positive things will force me to really feel that way. I'll keep trying.

So, was it worth it for me even to write this? Did I teach anyone anything? Did I learn anything myself? Am I better for it? Are you? Nope. But I thought I should explain my absence. And this is reality for me. Don't feel obligated to send me your good wishes.....I know you care and that you would take this from me in a second if you could. Truthfully, I'm embarassed that I'm not handling this (any of this) with a more positive attitude. I wish I could get there in my head. I'm hoping I will soon. If you want to know what you can do (as if you haven't already done enough).....come play with Jill at the hospital. She's on chemo and won't be feeling good Wed-Fri, so anytime after Saturday morning should be great (call first, just in case she's not doing well). If you're well, she would love someone to play princesses with her or read to her or just be interested in whatever she thinks is fun. And if you make a little dinner for your kids that night and have a little extra, she'd love some real food and sometimes I don't get around to making it the night before. Thank you for your continued support....it IS almost over. Sorry for my crappy attitude.

How Could I NOT Share This?????

2008-03-23T18:53:00.001-07:00

This is the latest entry from Mary Rutz' Blog....her son Aaron received a bone marrow transplant from his older brother, Adam, just over 2 weeks ago. An incredible miracle has occurred :)

Saturday, March 22nd

We have moved from darkness into the light…

The attending doctor came in today and told Aaron that he could go home before the end of next week. That’s probably LESS THAN FIVE DAYS FROM NOW! Aaron was SOOO excited he was practically jumping off of his bed. The only thing we have to do is change all of his medicines from IV to oral form. As soon as Aaron can show them that he can take all of his meds and his levels stay stable, he can go home.

What a perfect day to hear this news.

We (Aaron and I) celebrated our own little Easter Vigil. We felt at one with the Church as we asked…

Lord have mercy.
Christ have mercy.
Lord have mercy.

All you holy men and women, pray for us…

Lord be merciful…save your people
From all evil…save your people
From every sin…save your people
From everlasting death…save your people
By your incarnation…save your people
By your death and resurrection…save your people
By your gift of the Spirit…save your people
Have mercy on us sinners…save your people

Christ, hear us. Lord Jesus, hear our prayer.

Lord, give new life to your chosen, Aaron, by the grace of his baptism. Lord Jesus and ever living God, send your Spirit in its fullness on Aaron, who believes and professes you.

Christ, hear us. Lord Jesus, hear our prayer.

We watched the video of Aaron’s baptism. It seems so long ago now. Never, ever did I think that I would be sitting where I am tonight, hearing my son renew his own baptismal promises, the ones that we (Michael and I and Sr. Kathy and Barry) made for him when he was a baby.

And then we sang together (oh, you should have heard him):

“Let the poor man say, ‘I am rich in Him.’
Let the lost man say, ‘I am found in Him.’
Oh, let the river flow.
Let the blind man say, ‘I can see again.’
Let the dead man say, ‘I am born again.’
Oh, let the river flow. Oh, let the river flow.
Let the river flow. Let the river flow.
Holy Spirit come. Move in Power.
Let the river flow. Let the river flow.
Let the river flow. Let the river flow.”

Just before he went to bed he asked me, “Mom, do you think the Easter Bunny will remember me here?” In the morbid humor that he and I share I said, “I don’t think the Easter Bunny would forget a kid who has leukemia.” I caught myself just as I finished.

And he said to me, “But Mom, I don’t have leukemia anymore.”

He is sleeping now, but his Easter basket is out. The eggs are hidden all around the room.

We are ready for the new life found on Easter morning.

Happy Easter, everyone.

Big News

2008-03-19T16:03:00.001-07:00

Jill's going to be a BIG SISTER. I went to the doctor today and she confirmed that I am 8 weeks pregnant (due late October). How this happened, I have no idea. Seriously....I've never been one to have trouble conceiving (not complaining about that, by the way, I realize what a blessing that is), but it seems impossible that it happened when it did. And trust me, this was not in OUR plans (guess someone else has bigger ones for us). We can do this. We can do this. (I'm freaking out). Anna is very excited to be getting a minivan just like her best friend, Keili. I am very sad to have to give up my Montero. Hey, "Honest John"......need you to get me a good deal on a Town and Country. Let's talk...oh yeah, do you finance???? Hee hee......

Now Entering Our Final Lap

2008-03-18T13:45:00.000-07:00

So, I spent a good hour typing up a very detailed (and heartfelt) entry on the 13th.....I don't know what happened, but I lost it, hence why you haven't read something from me in awhile. I was pretty frustrated. To REALLY sum up that entry....Matt & I took the girls to Disneyland last Friday. She had a fabulous time, especially meeting the princesses (Snow White was her favorite...they even have a wishing well & a fountain with statues of her & the dwarfs...you can hear her voice from the waterfall, and echoing in the well, like in the movie...that was a big highlight!). She got a "special invitation" along with her sister to visit with Snow White and Jasmine one on one for about 10 minutes...it was so darling. We got great video. She loved the Teacups and Dumbo (we were able to secure a disability pass as she shouldn't be in the middle of big crowds of people, so we never had to wait more than a few minutes for each ride!) and the parade!! It was such a great day. We've been to a lot of parks.....I've really chilled out with this visit home. I guess last time home it was so hard because it had been and was raining so much...we were worried about mold/fungus in the air, and just kind of stayed holed up at home (which drives me nuts). Anyway, so today she actually dug in the sand and buried her feet and hands over and over, and I wasn't worried. Mainly because her WBC count is over 2000. She usually starts chemo again right around 1100, so she's past due. The doctor wants to admit her to the hospital tomorrow night (Wed). She will have 4 doses of chemo, 12 hours apart, then shots in both thighs with another drug, then she can go home (Friday night through the following Wednesday), assuming she is fever-free and we can control the nausea with liquid meds at home. She will be in hospital for her last big stay from April 2nd through the end of the month. My parents are coming out for a week or so right in the middle, following my sister's wedding, which I'm very bummed about not being able to attend :( But it will be great to have their help, and my Dad hasn't seen Jill since she was diagnosed. So, this entry wasn't nearly as "gripping" as perhaps my deleted one was, but thems the facts. I'm off to enjoy a nap at home with my best little buddies. It has been delightful spending all of this fun, focused time at home with my family.....I just so wish Matt could be here more often. Someone has to afford us this million dollar treatment (literally and figuratively speaking).

2008-03-13T20:13:00.000-07:00

Shared Perspective

2008-03-12T00:07:00.000-07:00

My friend Mary's son Aaron received a bone marrow transplant from his brother, Adam, a few days ago and is doing very well (thanks for your prayers). I wanted to share a beautiful piece of her blog with you:

From AaronRutzCarePage at www.carepages.com, by Mary Rutz:
I got to go to Church today and it was one of my favorite Sundays of the year. The gospel was the story of the Lazarus being raised from the dead. I always love the way our 10:30 choir sings “Roll Away the Stone” throughout the Gospel reading, and then the entire song later during the mass. I had an interesting thought during the homily.

We know that Jesus raised Lazarus from the dead. He had been in the tomb for FOUR days, and we know what a miracle it was for Jesus to raise someone from the dead. We know that Jesus said, “I am the resurrection and the life; whoever believes in me, even if he dies, will live and everyone who lives and believes in me will never die.” We know that Jesus said, “Lazarus, come out!” and he did. But the part that struck me today was what Jesus said to the people BEFORE he called to Lazarus.

He said to them, “Roll Away the Stone.” I guess it is strange that he asked them to do this. After all, he was about to RAISE someone from the DEAD, certainly he could have moved a little old stone all on his own. But he asked the community gathered there to roll away the stone. It was important for the community to do their part in that miracle. They didn’t just sit back and let it happen, they had their part to play.

So when I think about this story… what it means for Aaron… the promise of eternal life… the hope for and belief in a miracle… and what I learned today… that a community plays a part in the miracle, too. I KNOW that God can heal Aaron, and I know how much our community has been called upon to play their part.

I see this with each passing day. When I feel the weight of the stone and I think that our little family can’t move it by ourselves… I come home to flowers on our front porch and letters in our mailbox; to emails and messages of support; to lovingly prepared meals; to videos and music; to thoughtful gifts; to smiles and to phone calls; to friends who care for our children and those who offer their own blood; to words of encouragement; to hugs and tears; and to so many prayers.

So thank you everyone. Thank you so much for being a part of this miracle.

Don't Forget to Include Your Contact Info

2008-03-08T21:11:00.000-08:00

To all those who leave comments...thank you! I really enjoy reading them. And being as I have no way of knowing how many people read this thing (or who they are, or if anyone does anyway), it is nice to get some feedback sometimes, especially the "it's okay to lose it as long as you get it back" kind of comments :) Which leads me to....I have wanted to contact some of you directly after you leave a comment, but I don't have your email address (Connie Stewart!! Did yours change b/c every email I sent to you for awhile kept getting returned...I thought you just didn't like me anymore :). And David (Europangan??), PT from Launch.....don't know if you still read this, but how can I contact you? Anyone know?

Oh, and to those who have sent packages or gifts or done something amazingly nice for us in the past month or two (Jolly Jaeger....the embroidered pillowcase is heavenly sweet....and your daughter who sent us the box full of toys/books/DVDs/CDs....goodness just runs in your family!! By the way, the girls absolutely LOVE the Disney Cash Register :), I am so sorry for being such a slacker about thank-you notes!! It has been a hard hard month for me.....I intend to thank everyone personally, really I do. And I will. Anyway, I'm sure you understand. People don't give from the heart for a lousy little thank you note :)

Day 29 and counting.....

2008-03-04T21:38:00.000-08:00

So, tomorrow is Day 29 in the hospital (longest stay of yet) and Jill's ANC is still ZERO. She got platelets today, maybe that will give her a boost! Yesterday was a little stressful....she had to get an IV in her hand (only 2 attempts this time, but it still hurt...I cried right along with her...because she so rarely cries) for her monthly kidney test. I carried her down to the procedure room. She was so excited to be off the unit! It was sad for me to watch her eyes dart around like a puppy in a new kennel surrounded by new dogs....I think she was smiling a little (she was wearing her mask, so dutifully). She was happy, but it just made me realize how completely isolated she has been. So we got to the treatment room and she laid on a table for about 10 minutes while they injected a dye into her hand. She just stared at the ceiling and me and I sang to her...she twirled my hair and attempted to suck her thumb, then remembered she was wearing a mask and didn't make a fuss about it. She just held my fingers really tightly with her thumb-sucking hand and every time I finished a song she'd sigh, "Again". I held her in my lap for another 20 minutes while we waited for the transport guy to walk us back to her room. Any other 2 year-old would be a nightmare in these situations, but Jill.....she just rolls with it. They say sit, she sits. They say be quiet, she's quiet. I adore this baby for her patience and calm while in the storm. She's got it together way more than the rest of us.

When we got back to our room, we were told that unfortunately, we would be moving into a shared room (this makes only the 3rd move this hospital stay, so I guess we're "lucky"....what a vague and contradictory term to use in this situation). Gone are the peaceful quiet times and tv on only when we want it. Gone is the space to store the buckets of books and toys and clothes and food.....we still have a little space and our roommate is a beautiful and very positive 12 year going on 20 year-old girl who is delighted to finally be sharing a room with sparkly little Jilly.

After we got settled in our room, Jill donned her cutest blue frilly poofy tutu, her fuzzy butterfly wings, her pizzazy tiara with alternating pink & purple jewels, and with magic wand in hand made the double doors open out onto the world beyond with a "Bibbidy Bobbidy Boo!" There were 4 young people standing in a huddle right outside....they were holding each other & had obviously been crying a lot (the Pediatric ICU is right next to the HemOnc unit, so there are very often gobs of family and friends waiting to visit or hear news of how a young loved one is faring....passing them in the hallway always makes me a little sad as the kids they are there for are usually in pretty dire situations....car accidents, sudden strokes, severe asthma attacks....many of them are in comas.....it's especially hard to see families of kids who were in our unit just a day before....we could be there at any moment, just like them). One of the guys in the huddle noticed Jillian standing there in her prettiest pretty girl garb, little bald head, look of surprise that her magic worked (again), and he alerted the others.....they all stared at her, adoringly and smiled, and waved. The doors closed, as they do after a few seconds, and a look of sadness came over Jill's face. "It's okay....do it again!" I encouraged her. "Bibbidy Bobbidy Boo!" she exclaimed. I subtly pressed the button and the doors (magically) opened once again. This time a crowd of 8-10 had gathered, many teary-eyed and tired, but all gleaming with delight at this little happy princess, hooked up to an IV pole. We did this again and again....by the 5th time, the hallway right outside of the door was absolutely packed with members of this family (I later found out that the girl they were there to rally around was a teenager who had overdosed...she was taken off her ventilator the next day). They held hands and waved at the little angel before them....her loyal subjects. Jill was so thrilled to have all of this attention. People she believed were appearing out of nowhere just cuz of her fairy princess powers. People that shared in her joy even through their deepest sorrow. They wanted her to keep coming back, to take their minds off their pain for a few minutes, but my royal highness tires easily of such activities, so she changed directions and danced happily down the hallway to spread her love in other ways. This experience brought home one more time how truly blessed I am to have this little girl in my life. To be one of the few who gets to hold her tightly ever morning, noon, and night while she falls to sleep, to smell her sweet baby breath (even in the morning, it just smells delicious!), to be her Prince, her Troy, even her Evil Feen (Queen). I love this dolly.

Tuesday brought a few exciting moments.....first of all, our good friends Missy & Renee and their daughter Rhiannon came to the hospital to give us a care package. They had arrived the Wednesday prior and we had great intentions of spending a little bit of every day with them. Unfortunately, they were sick and it just wasn't possible. This cold/flu season has been a doozy...I am glad we called off the visitors (at least those who would have to fly in) as likely, this would happen time and time again. At least they thought to make a mini-vacation out of this before they made their reservations.....they got a hotel in Anaheim (right by Disneyland) and visited the parks every day of their visit. Their 4 year-old daughter had a fabulous time (she was even invited as a very special guest into the Princesses' Castle!) and I think they did too....but it was very hard not to be able to see them. Their friendship means the world to us and it ripped my heart out that they were 45 minutes away from us for 6 days but nowhere close to being with us. The scrapbook Missy put together of our family (Wizard of Oz themed, of course) is phenomenal! The greatest gift I can imagine.....I couldn't hold back the tears.

After our friends left, I was relieved for the WHOLE DAY by a lovely young woman named Jamila. She is the daughter of one of Matt's co-workers (and an incredible woman herself). I had only met her once....she helped out (very quietly and humbly) at the Torrance Bone Marrow Drive....she introduced herself to me as she was leaving and I was touched that someone we didn't know would dedicate so much of their time to help our baby. She offered to help out with Jill a week or so ago (when I put out the APB for assistance and Jill came down with her fever), but it didn't work out, and honestly, I didn't expect I'd hear from her again....when I was her age, I didn't do much volunteering!! Anyway, she emailed me on Monday that she could come stay with Jill as long as I needed her to on Tuesday, and that she did. She played with and cared for Jill all day....until Matt came to relieve her after work. I got to go home and granted, I cleaned, it was refreshing and freeing to be out of that place! I don't know how Jill does it. I'm going nutty in there!!! So thank you Jamila......that kind of favor cannot be reimbursed. Jill had a blast with you and I had a BIG break. You are an incredible human being :)

So while I was home on Tuesday, I called my Aunt Mary (who lives in Fresno) and she reiterated that she would be available anytime we needed her. I said, "Okay, how about yesterday?" And she hopped in her truck with a week's worth of clothes and made the 6 hour drive down to SoCal. I love spontaneous people!!!! She is currently at the hospital with Jill (I left her there at noon today and she is spending the night tonight while Matt attends to new water damage....don't ask) and I sit on my butt typing (actually, when I'm done here, I intend to play with Anna a little and get some really good sleep).

So God Bless all of the people who have reached out.....we have 'em lined up to help over the next 4 days....without all of you, they would seriously have committed me already. I don't know how to thank you. But I really feel like you all (family or not) are our family. This really is how the world should work. I don't know if I would be an iota of who you have been to us if the situation were reversed, but after having this experience, I sure will try. Once you feel it working for you, you can't help but want to make that magic for other people. What feels small and insignificant to you (bringing up some split-pea soup, making a meal, visiting, calling, emailing an encouraging message, babysitting, helping with house repairs, cleaning, driving Anna around, sharing recipes or giving me a cookbook that you knew I'd love, mailing us a donation, organizing fundraisers, hiking to raise funds for the cause, making hats/blankets/clothes for Jill, etc....), it's all huge to us.

Please keep in your prayers the Rutz family (Michael, Mary, Adam, Aaron, and Isaac). They are at UCLA, 3 days away from Aaron's bone marrow transplant. Adam (12), Aaron's (9) brother is his donor. Mary keeps all of us updated in her daily blog....I'm on the edge of my seat with this one. It's big. They are a very strong family with very strong faith. I admire the courage in every single one of them. But they definitely need positive energy aimed in their direction.....so muster it up and send it!

Are you building cathedrals?

2008-03-01T15:46:00.000-08:00

(This was sent to me by my good friend, Renee, and I felt inspired. I hope it speaks to you the way it did to me.....the rewards are in the creating.....)

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, Can't you see I'm on the phone?' Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all.

I'm invisible; "The Invisible Mom."

Some days I am only a pair of hands, nothing more:
Can you fix this?
Can you tie this?
Can you open this?

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated summa cum laude - but now they had disappeared into the peanut butter, never to be seen again.

She's going, she's going, and she's gone!

One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she
stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself as I looked down at my out-of-style dress; it was the only thing I could find that was clean. My unwashed hair was pulled up in a hair clip and I was afraid I could actually smell peanut butter in it.

I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals o f Europe . I wasn't exactly sure why she'd given it to me until I read her inscription:

'To Charlotte , with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book.

And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals - we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam t hat will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.'

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It
is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride. I keep the right perspective when I see myself as a great builder.

As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'you're gonna love it there.'

As mothers, we are building great cathedrals. We cannot see if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Good Day

2008-02-26T23:19:00.000-08:00

Well Scooby Doo! Today went smashingly well all in all.....a welcome change from the past week....maybe, just maybe, it was Anna's comment this morning, as she was dutifully getting herself dressed & ready for school (Miss Ultra-Independent...see! Lazy Parenting Pays Off!):

"Mom....if you have a good attitude, you'll have a good day"

This is the mantra I've been reciting since February 4th, our first day back in this place....I've also been pounding it into Anna's head. She must really believe it now! It worked! Okay, so I had a good attitude (and some ephedrine), and low and behold....same crappy circumstances, different effect on my spirit.

JillyBean is excellent....we are getting pretty smooth at our little Siamese Twin dance-around-the-maypole-thing. I say "STOP!", and she usually listens (yesterday's yank of the line as I lifted her out of her highchair, not knowing the line was stuck under it, may have burned in her brain that if you don't stop, you get hurt..we had to replace that dressing a few days early & now I'm very thankful they taught me to loop it before I taped it to her chest). She has a lot of bruises left over from low platelets on Monday....bruises that say, "I'm a toddler and I KNOW how to have FUN." The PT came to work with her today...had her climbing and jumping and riding a tricycle at lightning speed.....really wore her out. She's worn out plenty enough though with all this Benadryl.....one of the antibiotics she has to be on (for the next 7 days) causes an allergic reaction, so 4 times a day, starting at 8:30am (right about the time she wakes up), she's invited to geeeetttttreaaaalllllygrogggggggggy while teased with "Hi guys! Playroom's open!!" and the sound of happy kids in the hallway. "MUST.....PLAY.....GOTTA....do it.....allllllllll rightttttnowwwwwwwww......" Crabby soon follows but that's immediately followed by intense cuddling while sucking the thumb and twirling my hair with her bald little (FUZZY now!) head in the crook of my neck (YUM!), so it's really not that hard to push through.

My friend Rebecca visited yesterday (with homemade enchiladas...to die for) and a ton of hand-me-down princess memorabilia for Jill (she can't sleep without her Cinderella). Guess we're encouraging this princess business (yeah, yeah, Dina, I know). And today, my buddy Jessica, played with Jill for an hour while I ran to Costco (don't pester me about going, I know 10 of you would've picked up all the stuff on my list, but I actually enjoyed it...late night right before they close is the ONLY time I enjoy Costco), then we hung out and talked while Jill slept....loved it!

I need to hit the hay right now so I can be ready for a great day tomorrow. And if you're wondering if I'm bipolar.....do you even need to ask?

Thanks for the Platelets

2008-02-25T14:40:00.000-08:00

They don't tell me when Jill gets "designated" blood or platelets (everything is sooooooo confidential), but I found out today (through our nurse) that Jill's last bag of designated platelets (meaning, somebody came & gave in her name) was due to expire today....she needed them & they are being transfused into her little sleeping body right this minute. So, whoever you are, thank you. A little bit of your life is now part of hers.

Over the Hump

2008-02-24T23:42:00.000-08:00

On the heels of Day 20 for this delightful hospital stay, here is how the past 5 days have gone....Jill's fever, which started on Wednesday and finally went away Saturday, was caused by a bacterial infection in one of her lumens (IV lines)....it was a strand of strep and got into her bloodstream through the line. Could've been introduced from the outside, maybe a line wasn't cleaned well enough before it was hooked up to a med, or it could've just been brewing inside her body & she was unable to fight it this time....it's a common occurence with these kids in this stage of the game, and could be deadly....like, if they hadn't gotten her fever under control (it got up to 104.5 a few times). But they started her on 3 hardcore antibiotics (in addition to the 3 she's been on every day since October) as soon as she spiked & gave her Tylenol and this miracle ibuprofen drug called Trilisite (when the Tylenol wasn't working), which always brought it down. She was pretty miserable for 3 days...not really moving much (VERY unlike her), but is now back to her old feisty self. She will be on all these drugs for at least until Wed (and if blood cultures are still positive then, for another week)....we don't know when we'll be leaving this time, but likely no sooner than Wednesday, and even more likely, longer than that.

My thanks to all the people who responded to my cries for help. Even saying you can't but wish you could, meant a lot to me. Thanks to those who offered help right away and to those who came to keep me company while I struggled with being stuck in here. Lisa, thank you for lunch & your great company....Jamila, thank you for offering to stay with Jill all morning, if she hadn't been so sick, I would have taken you up on it in a heartbeat..I have your email, you'll be hearing from me, BET :)....and Kristen & Michelle (who stayed for 5 hours!), I enjoyed our crazy conversations more than you know :)

As hard as it is to be here, there of course are bright spots....the other parents we are in contact with daily, and the wonderful nurses and Child Life friends. Wow. I feel I've established life-long friendships with a lot of these people (probably every parent feels that way), but I truly look forward to the days when certain nurses are working :) One, in particular, who works nights always makes me feel like I can do this. We don't spend too much time talking about "this", but she just is so sweet and loving and compassionate, and well-intentioned and FUN (and one of Jill's hand-down favorites)...I just really feel better when she's in the room. I couldn't do this if I couldn't talk about it every day with SOMEONE face to face. They make me feel I can (and should) do that. Although, I have to say, that it's trying to be having a hard time with so many people around. People who I usually talk and joke with....when I am feeling hurt or tired or angry, and can't keep it under wraps, I almost HAVE to broadcast my feelings because I'm living in a fishbowl. Bawling on the phone with Matt about the state of our union, having people walk in and out every 20 minutes to start/stop meds, check lines, take vitals.....man, nothing is personal. And sometimes I really want it to be. I don't like being the one whose problems are everybody's business. Yet I open myself up for that with my personality being what it is.l No one ever asks Matt what's wrong when he's quiet...he's always quiet. When I'm quiet, "Oh my gosh, what's wrong? You're not smiling...are you okay?" Maybe I should stop smiling. Take a page from a pensive person's book. Introvert. Stop laughing. I could do that. I could try. So next time you see me sulking, just keep in mind that maybe that's just "how I am" and go on about your business. Man, why does this have to be all about me??? Focus change.....

Anna has been playing basketball for the past month or so and she's kicking some butt (with her effort, at least). She's learning how to dribble and to stand her ground with those pushy boys. The only girl on the team has the strongest personality...nothing shakes her. I'm so proud of her. The situation we're in continues to be really hard for her. She wants nothing more than to have us all together in the same place all the time. She wants mommy & daddy both to come to her games....both to sit at the dinner table with her...both to tuck her in. This must be what separation/divorce feels like to a kid. It's so terribly sad, yet we find ourselves getting so exasperated with her over her reaction to it. Because we are doing our best and we can't find a way to make it any easier for her. We've debated sending her to Missouri for a week during Jill's last hospital stay, to give her a fun adventure, playing with her cousins & being with her grandparents every day, while relieving some of the stress we feel having to get to her....but we're torn....would she feel abandoned? Sent away? Unloved by us? Would we feel terrible with her being gone? Guilty? Sad? Regretful? Anyway, I wish we could meet Anna in 13 years so she could tell us how she wished we had done this or that differently....save her some scarring, but I feel that whatever we do we are destined to screw up our kids in one way or another. I know every thing that is wrong with me is MY mom's fault (sorry, Mom)...that's just they way it usually goes....the one we love the most, that meant the most to us, that was most instrumental in our upbringing, is usually the one who gets blamed for things when they don't work out. I'm also sleep-deprived, so maybe it's just that.

Jill is still into her play-acting. I bought her a Princess Theater book so she can act out 3 plays with paper dolls, and she DOES...with incredible accuracy, and inflection (I might actually try to get her in commericals when this is all over with). My favorite is the scene she plays out over and over lately....she is the Prince, and I'm Snow White. I lay down & close my eyes, and she kisses me on the lips (I'm the only one who is allowed to do that by the way...ha, ha!). I wake up, she says, "It's twue yuv's fuhst kiss!" and we get married :) My Prince is asleep now...I think I should follow suit.....

Crazy

2008-02-20T02:31:00.000-08:00

I'm so tired. Jill has woken up a few times since I finally got her down at 11pm (we were waiting for blood, so I kept her awake, but Matt reminded me of the burst of energy she gets from Red Blood Cell transfusions, so I asked the nurse to hold it till the morning). I think her tummy hurts, but I can't tell why. The nurses think we should just keep an eye on it.

My birthday was such a flop. Why do I care? I'm 33. I don't know....my birthday has always been important to me (I'm selfish that way..can you tell by the way I write?). Anyway, it began with the night before...Matt & I went to see "Juno" while Aunt Annie stayed with both girls at the hospital. That would've been great, but we got into some little spat about him not listening when I talk (I'm sure he had a side, but he's not the one blogging, so I win this one), ended up back at the hospital not speaking, and he & my aunt left. Anna was staying the night IN THE HOSPITAL ROOM for the first time (a big no-no, but the friend she was supposed to stay with overnight had a fever....Matt had to take Annie to the airport the next day at 5am, and there was no way we were going to ruin Anna's day like that..she is a BEAR in the morning and needs her sleep)......so I spent a good part of 2 hours trying to calm Anna down because she missed Daddy & didn't want to stay at the hospital (even though she was super hyped about it 4 hours earlier). I resorted to ignoring her, like I usually do, then barking at her about pulling it together, this is hard for everybody, deal with it......nothing works. I don't know what the hell I'm doing (obviously). Jill was weepy too....she's been out of sorts the past few days....just crabby and argumentative (hmmmm..I wonder who she gets THAT from.....), so I finally get them to bed....Jill in her lovely jail-style crib with the sides that could wake the dead (and they do, 5 times a night) and Anna in her tent on the mat, when the maintenance guy comes in.....you know, the one we called at 4pm to say our sink was backing up. It was 9:30 pm. I was so done. He says, "It'll only take a minute". He plunges like crazy, then something black crap goes flying into the air and splatters all over the mirror (and my toothbrush)...."This might take longer than I thought...." He gets down on hands and knees, opens the cabinet doors and starts pulling on pipes...."It's gonna smell bad....." Woah woah woah. "Wait. Should the kid with no defense mechanism be exposed to sewage right now?" He says, "Maybe you should ask your nurse. I can wait...." Nurse says absolutely not, leave the room. So everybody UP.....can't find anyone's shoes, they're both crying, Jill is now hooked up for her overnight fluids, so I'm carrying her while dragging a very bent out of shape Anna (who isn't used to late nights) down the hall to the playroom where we compete for quiet with video games and dirty children of visitors. One hour later, we're back in bed. They sleep great. I get nothing. Very tentative nurse who moves like sap dripping out of a tree (the kind that's TAPPED....Annie, that's for you :) and can't figure out how to lower the crib sides to save MY life. Leaves the door wide open when she comes in to slowly do her noisy thing, so I've got light in my face and loud guffawing/doors slamming/beeps beeping/drummers drumming (okay, maybe that didn't happen, but it sure sounded like it) every 2 hours or less. Oh yeah! And don't forget to test the fire alarms at 5am (like they do every other day at random times) for 30 minutes!! God help us if there is every a REAL fire in this place (more on that later....). On to this morning (or would that be yesterday morning at this nearly 3am point?)....my stupid birthday. How fun could I have expected it to be with Anna here? She and Jill together in a restrictive environment is a recipe for disaster. Every rule they can break, they try to, or complain loudly about how it's not fair that we can't climb onto the windowsill to watch the workers pouring ashpalt outside (which, coincidentally, I can smell....HEPA filtration, really???). No really, it wasn't that bad (for brief periods). They did okay (thanks to CiCi and Alison....nurses' aide & Child Life Specialist) who I think could read the look on my face ("take them for a few minutes or I'm bolting"). They both napped for an hour so I researched more on leukemia and found stuff that just made me cry. Maybe I was crying though, for other reasons. I cry all the time now. I didn't cry much in the beginning. I'm just so dang tired of this life. I read other people's blogs and they are so uplifting....maybe mine was even last month, but man.....I just can't do this anymore. Have to. Can't. Have to. Okay, have to. I just sent out an email begging for volunteers to relieve us for bits of time, but feel like crap now for doing it.....why can't I do this on my own? It's almost over right? It could be so much worse......wait, back to fire. So someone set a bagel on fire in the microwave (and never owned up to it), so as the girls are napping, I'm smelling this pungent awful death smell and getting so riled that we are inhaling asphalt from right outside our window (she would be so much safer at HOME)....I get off the computer, storm out into the hall and am engulfed in this creepy haze...."Somebody burnt something in the microwave," the secretary reports, "They're bringing up fans". I head back to the room, put a blanket in front of the door and shake my head in amazement at the circus I'm in. Matt shows up shortly after nap. I'm excited to be going home soon (after he spends an hour of one-on-one time with Anna in the Starlight Room...room for siblings to play when visiting, if they need a break from the unit). I'm thinking, "This time with Daddy will nearly ensure that Anna is cool with me for the night, although I'm never her first choice". Nope. She comes back to the room all excited and happy. I say, "What kind of night are we going to have Anna?" She says, "A great night!" I say, "Okay, say goodbye to Dad & Jilli." She looks stunned. "I thought Daddy was coming home.....(face gets all contorted)....I don't want YOU I want my DAAAAADDDYYYYYYY!" I'll delete the next 5 minutes so no one tries to committ me to the psych ward (I don't have time for that right now), but suffice it to say, I was pissed. I wanted to go home so bad. That was the only thing I really wanted on my birthday. To not be here the whole day and night. To get some good uninterrupted sleep. To get that burnt flesh smell out of my nose and eyes. Matt tried as hard as he could to calm her down, talk her through it (that's why he's the good guy). He even told her in no uncertain terms, "Anna, it's Mommy's birthday. She's going home with you," but honestly, I would have much rather stayed in this dump with a kid who enjoys my company than one who wishes I were the other parent. And truthfully, I would not have made that night fun for her. It was best I stay. So Jill and I ran around acting out our plays and discovered that if you hold the big bubble wand in front of the HEPA filter fan, you can totally fill the hallway with bubbles!!!!! That was cool....everybody who walked in those double doors for the next 40 minutes was greeted with happy. How can you not smile when you walk through a sea of bubbles????

The floor is full (we had 11 patients 2 days ago and nearly 24 today)....it is bustling and loud and a crazy zoo here. I will be very tired tomorrow morning (but what's new?). I have my happy baby and a few slivers of sanity left. For those who have marvelled up until now how I do this? You see?? Do you see?? We all knew it was coming.....

As Seal so marvelously puts it, "We're never gonna survive unless we get a little crazy". Oh, I'll be survivin', then. I'll outlive 'em all.

2008-02-16T23:08:00.000-08:00

My Aunt Annie has been in town....one reason I haven't posted in awhile. It has been great having her here. She is healthy (no fault of her own) & fun & very helpful. She quietly anticipates every need, and fills it. The girls adore her....especially Jill (she calls her Auntie Annie). She stayed overnight with Jill on Friday. Matt & I took Anna to her bball practice, then to McDonalds, then dropped her off at James & Mikayla's house for a sleepover. After Matt & I devoured the best dinner I've ever eaten...I mean, seriously, IN MY LIFE (compliments of Renee, who prepared a special Valentine's Day Menu rich with chicken salad on endive, crab stuffed mushrooms, crustini topped with mozz & basil, a light strawberry salad, and orange-liquer infused chocolate-covered strawberries, with rasberry sorbet for dessert), Anna called to say she wanted to come home. It was a short date, but we needed it. It's so hard not being able to talk to each other about anything but schedules & sickness (and moldy floors, which Matt has been working on today with our good friend Jim...thank you!).

Anna needs more good attention. We spend so much time rushing her & telling her what NOT to do....and ignoring her positive qualities as we make over Jill's, how could she not be hurt? One of the nurses made a comment today that she was watching Anna's face as a million people were making over Jillian in the hall the other day..it's like being Angelina Jolie's sister. Who cares about how wonderful Anna might be, look at THIS one! I'm trying, but not as hard as I should or could, to give Anna the love she deserves. The lack of sleep & energy this place zaps out of me makes it very very challenging.

Sunday & Monday will be spent with Aunt Annie. Starting Tuesday 2/19 (yep, she's leaving me on my birthday, sigh), we once again, welcome visitors....just call first. We were moved to a single room today (the census is low & Jill has a bit of a cold, that they think may turn into something greater, so while they have the room, best to give it to her just in case she needs to go into isolation soon....let's pray she doesn't, but either way, I now don't have to leave the unit to go to those stinky yucky bathrooms, and we can sleep with fewer interruptions, although we will truly miss rooming with Christian. I told him we were moving out today....I said, "You get your own room!" He said, "I wish not", but he brightened up when he found out he could now move to the window! It has been so excellent having him & his family as roommates. We spent all last week every day with our curtain pulled back all the way (at his request, for the light, and the company). It made the room look so much bigger & brighter....his visitors were OUR visitors, and vice versa....we shared many stories & laughed a lot. It was so so so nice to share this journey with them for a little while. Things that may have been slightly aggravating coming from other people, didn't phase me at all when they came from Christian's camp, because they were like family to us. Christian's grandmother, Carmen, especially touched my heart with her love for God & positive outlook on this situation. She considers this (as I do, most days) a blessing and thanks God for choosing her & her family to receive the goodness that just oozes from others who are touched by Christian's story. It is hard, no doubt. But this is life and we are living it in a way that not many people have to (get to?) do.

A friend of ours came out with her son last week to meet Christian. Aaron is the same age & just got a mohawk for the occasion. He is slated to become a bone marrow recipient on Feb 25th. His older brother is his donor. I am so impressed with Mary & her son for their courage and ability to touch other people even in the midst of their ordeal. I asked Mary to bring Aaron to Christian as I thought it may make Christian less scared and realize he's not the only one who has to face such a scary thing. I was so impressed with how it turned out. Aaron brought Christian football trading cards & a nerf football (which he passed around with Jill the next day, even teaching her how to throw it down for a "touchdown"), of which Christian was thrilled...the boys played video games and talked....Mary even brought Aaron back the next day bearing Taco Bell. That day Mary, Leslie (Christian's mom) and I sat and talked for an hour or so about our experience. We all agree that we have been picked for this, because someone thought we could handle it. I need to keep reminding myself, that no matter how hard this gets or how endless it seems, it's a sliver of time....and NOT an impossible hurdle to overcome. As happy and energetic as Jill is EVERY DAY, I have no right to complain.

I have had so many other cathartic experiences this week.....I may delve into them in this forum later, but now, I must get some sleep so tomorrow, I can keep up with my little "sickie".

My Mom is So Boring!

2008-02-09T23:57:00.000-08:00

If you are free of illness (and there's none currently raging in your household) and you are up for keeping up with a crazy kid on chemo (I was telling someone today that I couldn't believe Jill's energy because...and Jill went, "I'm on KEEEEMO!" I died laughing....she kept saying it...."I'm on KEEEEMO! I'm on KEEEEEEEEMO!"), allowing for the fact that she may crash soon (although she's eating more at this stage of the game then she was last time...I think she's trying to prove something here), then, please, by all means, come play! Don't worry, I won't leave you all by yourself, but welcome (as does Jill) the change of scenery. And right now, there ain't none, so peoples got to do. Sept little peoples, cuz they dot too many derms.

I've been imitating Jill's speech a lot lately TO her.

She says, "I donna sigh." I say, "You donna sigh?" She says, "No! I donna SIGH!" I say it again....she gets really mad. "I said 'I donna..." "Cry?" "I said dat, Mom! I said SIGH."

Much thanks to Melissa (beeeeeutiful friend of Jill's, just diagnosed in Jan) who gave Jill lots of fun goodies (both girls love the blanket/backpacks....thanks Teresa!) and visited with her a little today.....she's not feeling so hot, so please, everyone, send her Happy Vibes.......Thanks also to Nika (a 2 and 1/2 yr old buddy, also diagnosed in Jan) who came to visit Jilli after her treatment and gave Jill a Cinderella dolly.....Jill LOVES it. Matt says she didn't put her down all day! We are so impressed with these two families and their strength. It is inspiring.

To our dietician, Shahin who loves Jill to pieces and gave her the CUTEST little outfit the other day.....and nurse Colleen for the Sharpay doll with microphone, that sings "Fabulous"....WOW. How did we get so lucky?????? As hard as this hospital business is, it sure helps that Jill's medical team genuinely care about her so much. Thank you all.

I just have to say, also, that the roommate situation couldn't be better. Christian is SUCH a wonderful human being.....he lit up the first time he saw Jill (he has a 2 year old sister at home, whom he misses terribly & his mom told me today that having Jill around kind of helps to fill that void) and has been her little buddy ever since. I leave the room for a minute, with Jill "safely" locked in her crib and Christian pulls the curtain back so she can see him & tells her not to worry, that he won't leave her side until I get back. He quietly giggles on the other side of the curtain sometimes when she babbles away like a looney, and is soooooooooo respectful of the space we all share. Jill takes a 2 hour nap every afternoon, and although we haven't and wouldn't ever request that our roommates respect that "quiet time", Christian just does. He offers to turn his tv down if he thinks she's ready to sleep and told me the other day, "You guys respect me, so I respect you." I LOVE this kid! Although I want him to go home soon, I really don't want to lose him & his family :( His parents are amazing people. They need our happy thoughts and prayers, too. I will be posting upcoming fundraisers on this site for all of our new friends from Millers. Many will be things like dinner.....if you're going out to eat anyway, might as well give part of that check to a family in need. We are eternally grateful to each and every one of you for all of your support thus far. We trust that if you can help our friends, too, in little ways, you will.

The circle of love just keeps growing.....with every tired limb, a new one sprouts in its place.

So to wrap up (and emphasize the beginning of this post), if you've been staying away because you're sick and now you're not....call me! I miss you! If you've been staying away because I drive you crazy, well, then.....hmmmmm.....I guess that's that. 310-748-4378 (No unsolicited calls yet....guess it's only a matter of time. Oh well, maybe they'll come to the hospital! Sniff, sniff....)

Here we go again....

2008-02-06T15:28:00.000-08:00

We were admitted last night, very smoothly, thanks to Renee, for making us tortilla soup & fruit parfaits (does your creativity have a limit??), Matt for leaving work a little early so I wouldn't lose my mind, Kristin for playing with the girls at the park while I ran errands, Alyce for all the fun goodies (love the Hike for Discovery info sheets....you did a fabulous job...I am definitely doing this NEXT time....and the girls were super excited about the fairy godmothers, dwarfs, Ariel & Tinkerbell....some fights ensued, but no blood was shed), Karen, Heather & Pete for helping us move our stuff in and Heather for making the most spectacular leafless salad I've ever had in my entire life (I need the recipe....NEED the recipe), with warm pumpkin bread, and Janel for getting us a private room and our favorite night nurse. Unfortunately, we lost our private room this morning, just after I unpacked the last little thing. Some kid had a fever or something & needed it....we have been spoiled to have one so much, actually, so.....at least it's on a B side (close to the window) and our roommate seems pretty quiet. He's 9 (one of 4, and mom is pregnant), and currently playing video games in the playroom while Jill sleeps. She had her bone marrow biopsy and spinal tap this morning, and despite taking an extra long time to come out of her drug-induced stupor (she was still tripping over her own feet and swaying while standing in place right before nap...a good 3 hours after being sedated....a little odd, I think), all seemed to go off without a hitch. Okay, so guess that's that. I thought this day would fly by, but its slowly creeping, and I think that's because of my attitude. I've been dreading this visit...I've been telling myself (such a glutton for punishment) that this round will be the hardest because we're far enough in now that the adrenaline rush of "let's do it" has passed & there's nothing left to troubleshoot, really....it's just the same 'ol annoying crap & I'm ready to get off the crazy bus, now. And it's not the LAST one......with the last one, you can be like, "it's almost over...it's the LAST one!" (sigh) Attitude must change if I am to get through this next month without going batty. Hard to do, but not impossible. Helps that today is Ash Wednesday, a day of reminding ourselves that (apart from the fact that we're all big sinners) life is short and no one is immune to death, so we should value our time here and use it wisely. It never fails that as soon as I feel I can't take anymore....I am reminded of how this is just another bump in the road & how everyone has them....some are bigger than others, and it's all relative.

I will now be moving on. Moment to moment.

Round Four

2008-02-04T14:04:00.000-08:00

We will be admitted to Miller's once again tomorrow night (Tues) at 8pm. We're looking for one or two people to help us move in....around 8pm, either meet at our house & caravan over with Matt following me & the girls (and the STUFF), or meet us at the hospital just to help carry stuff up & get us settled. Anna seemed to benefit from going with us last time, so it's kind of hard to attend to the kids while we're lugging suitcases & bins....it takes way long for just one of us to do on our own. Any volunteers? Call me 748-4378.

'S all about Me

2008-02-03T22:21:00.000-08:00

Okay, so I'm really ready to get back to business & get this cancer thing taken care of once & for all. We've been home for just over 2 weeks now. A good thing in that Jill has been getting stronger & stronger by the day (not that she's really all that weak, even on chemo), she has gotten to spend a lot of quality time with her sister (albeit a lot of it has been with her teeth in Anna's shoulder, back, or chest....I tell Anna repeatedly, if you don't want Jill to bite you, don't say, "Okay Jill, I'm going to try & catch you & when I do, BITE ME."), and we have all had the opportunity (although some of us are too stupid to take it...that would be me) to get really good sleep without the constant interruption & discomfort of hospital life. But I'm so incredibly bored. We have gone a few places, but for the most part, have stayed indoors & laid low. The doctor questioned why we were keeping Anna home from preschool (she only goes 2 days a week now, and we actually only kept her home 2 days...she returned last week) & we reminded her of the dangers of Jill getting sick & that preschools are crawling with germs....we thought she'd be pleased we were taking every precaution. She laughed, shook her head, and said, "You can't live in a bubble", and I insisted, "Oh yes we can. For 2 or 3 more months....if it gives Jill a better shot at survival. Oh yes, we can." It's a little (sometimes a lot) frustrating that these medical professionals scare the living poop out of you with tales of kids ending up in the ICU because they contracted a fever, and in the same breath, make you feel like you're a looney for doing everything in your power to keep that from happening. "If she comes down with something, it will likely be from bacteria in her own body". Okay....BUT if Anna brings home hand-foot-mouth disease from school and Jill succumbs to THAT, then well, maybe keeping Anna home wasn't such a bad idea. I'm pulling the "I'll do what I think is best because I'm the mom" card & if you want to joke about how worrying is my favorite past-time (I was so pissed off at that...yes, I just LOVE to worry....it's FUN for me) and that the big deals you warned me about are only big deals in my HEAD, you have a good time. Guess you can't always be delighted with your doctor. They're human too. And extremely over-worked. But I can't sit back (like I stupidly thought I could at first) and expect these doctors, nurses, social workers, or other medical staff to save my kid. Part of that...a big part...is the parents' job. We had a few really terrible experiences with nurses close to the end of this last visit....a few too many gross errors prompted me to write a letter to the Nursing Coordinator (fortunately it was well-received & attended to immediately) AFTER I requested (over the course of one day) a complete and VERY thorough training on every aspect of Jill's medical care....some of which I hadn't payed much attention to because I didn't think I had to. Unfortunately, one mistake can cost your kid her life. REALLY. So, like it or not.....well, let's just say, I want to get this over with, but am in no shape or form looking forward to going back into the world of "what is this med? why is she getting it? how many cc's in what strength solution how many times a day is it being administered? drip or push? what are the side effects? are there other drugs that may have less of those? if she experiences one of them, what drug does she get then? and what are the side effects of that? " and don't even get me started on butt cream, eyedrops, mouth sores....oh god, you name it. I'm feeling negative lately. The novelty has worn off & I just want to get out of this. Or maybe I'm just tired from too little sleep every night. It's that same reason. I lay down in the dark & think about the worst things you can imagine....and then the headache starts....and I can't sleep anyway, so why try unless I really know I can't not. Did I already say all this in another entry? If I can't remember, maybe you won't either. But I'm not writing this for you. Or am I? I read in a Parenting Magazine the other day that blogging is the new trend among parents (especially moms), and though they didn't mean this in a bad way, it is an extremely narcissistic practice. You know people are going to be reading it, so you write in a way that makes you look good. Have I been doing that? Maybe. It's no different than sending your friends pictures of you & your family in your best moments. "Aren't we the happiest family on the block? How lucky are we?" But then, how many people photograph moments they don't want to remember or don't want others to see? Just know that we all have them. Both the happy and the crappy. So whatever. If you're reading this, maybe I'm narcissistic.....but you're nosy. So there. Why am I going off on YOU? If I lose my audience, what am I but a rambling crazy lady talking to herself? In that case, why not just put all this junk into a private diary that I store safely in my dresser drawer? Because, I've NEVER kept a diary. I'm an exhibitionist! I don't care to write to myself. It's only interesting to me if it's interesting to someone else. Wow, this introspection is making me think I should get to sleep right now. I think I'm tired enough. Can't you tell? It's comforting to know I can go back tomorrow & erase all of this. But will I?

Narcissist Out.

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2008-01-24T23:03:00.000-08:00

Jill was sent home on Sunday. Sorry for not posting this sooner...many have called wondering what is going on. Everything is going fine, except that Matt & I have been doing too much research on what can go wrong between now & the end of treatment and have decided to keep her indoors as much as possible (mainly due to the fear of fungus as Invasive Aspergillosis can easily be contracted from breathing in a spore & they're everywhere, especially after it rains....and can cause awful awful problems & can quickly lead to death...harsh, but true). We've also decided to keep Anna home from school until Jill goes back to the hospital. We don't want her bringing anything home. And we're not gonna do any playdates or anything fun with other kids with her, unfortunately, due to this awesome fear. So........the girls are having a lot of fun together. They've been acting out fairy tales & scenes from their favorite movies (Anna & I were at Claire's the other night & I told her she could pick out one thing...she chose a Highschool Musical necklace with Gabriella on it...I was wondering why she didn't choose Troy, and she said because wearing a Gabriella necklace makes her Gabriella....anyway, she's been giving the necklace to Jill, who is pretending to be Troy, and walking out of the room, then walking back in & telling Jill, "Now say 'I promise forever'" or something like that, and Jill says what Anna says, then Anna says, "Now put the necklace on me" at which point Jill scrunches up her face & looks at me and says, "It's not fair! I want da necklace!" and Anna spends 10 minutes trying to explain that she's just going to take it for a while because it's how the movie goes....and they do this 20 times a day). Yeah, so like I said, THEY'RE having fun. I'm miserable. I want to get out of here! I want to do normal stuff. I want to get stuff done, like groceries, bank, dry cleaners, etc....WITH the kids. That's fun for us! For me. Social interaction with tons of people throughout the day. ARgh. I hate this. But what am I complaining about? We're home. I spent 3 hours organizing hair bows & clips & barrettes today (I told you I would, Aunt Susie!)....putting them in one of those shoe organizers you hang on the back of your door....Dina gave me that idea. It worked out awesome. I'll send pictures later. Oh, and I haven't been cooking because of my Monday & Tuesday night Chefs, Renee & Kate. How these ladies, with 2 & 3 kids respectively & tons of other stuff to do (Kate even works per diem as a nurse, and I can't even begin to tell you all the amazing things Renee does with her time), have time and energy to make complete meals for MY family nearly EVERY WEEK....I'll never know. But it's inspiring. And one more reason NOT to complain.

I just need to say thank you to my Northern CA & St. Louis Crew. I feel terrible for not acknowledging you more in the blog (some of you I haven't even gotten around to thanking personally). My cousins Ryan & Stacey sent gobs of great presents to the girls via my aunt & uncle the day after Christmas. (Stacey, I love the "Elf Help" Books!! Send me your email address!) My friend from gradeschool, Stephanie, organized a toy/book drive for Jill & sent 2 huge boxes of fun stuff to us for Christmas. So amazing. My cousins, Jessie, Mike, Nicole, and John have been raising funds for our family in various ways....JillyBean Jars at their workplaces and a fundraising night at Chevy's Restaurant. My Aunt Deb, who sent Jill two of the cutest hats I've ever seen....Jill wears the flower garden one almost every day. And one relative in particular, who's name I won't mention, gave us a wonderful gift, from his heart. A gift that had been given to him. And that is the best kind of gift. I considered trying to talk him out of it....but remembered Anna having me send her cousin Maddie a birthday present....a present that she had just received for HER birthday, and one she really loved & played with. I tried to talk her into sending something else...told her we could buy something new, and she said, "No, Mom. I want Maddie to have this. Because it's special to me." She did it for Maddie, but she also did it for herself. It made her feel so happy to share something special to her.

Everything you'll ever need to know, you learned at a ripe young age. Or maybe that's backwards. Maybe as adults we learn from the Littles. The basics of love and kindness, taught to me by a girl who just today realized that her name, spelled backwards, is still Anna.

Pictures from December/January

2008-01-19T22:49:00.001-08:00

I wanted to post at least 20 more photos on here, but it's taking too long for each one to load. If you are interested in viewing an entire album (most of my "loyal readers" are already on the distribution list....shoot me an email & I'll add you....beware, I sent LOTS of photos). Jill didn't come home today....maybe tomorrow......

Nurses Heidi & Janese with Crazy Anna & Jill.

Anna comes to the hospital every Friday and stays all day. This is the girls' morning ritual after breakfast. They get themselves into this position...I provide the pillow :)

Bone Marrow Drive in San Pedro Jan 5th. Loyal friends (and hard workers), from left: Ally, Dina, Shelly (National Donor Program Rep), me, Shana, Matt, Kristin, Jim & Rebecca.

Jill's #1 Fan....Nurse Janel, doing "ballet".

Christmas Day. Costumes c/o Santa (a.k.a. Neighbor "Birdman" Steve)

One of the favorite presents of the morning. International Dolls from Aunt Kami. 5 minutes after this picture was taken, half of them were naked. As I type this, there are NO shoes ANYWHERE, each girl has half an item of clothing left, one has a mohawk, and one has no hair at all (Jill started pulling the hair out of the head of a blonde doll and I tried to stop her...she looked at me very intently and argued, "But I ha no hair." I gladly helped her make that dolly look just like her.)

In the Face of Fear Sit Me and Little Miss Fearless

2008-01-17T22:55:00.000-08:00

Woke up to GREAT news. Jill's ANC is 160. The jump to 500 could be as little as 2 days away...we may be going home Saturday! (It could stay there or go the other way too, but the past 2 rounds have shown a 3 day jump from zero to home). Oh man, the anticipation of this round coming to a close is sooooooooo much greater than that of the first two. Probably being stuck in isolation for 8 days contributed to that. I had some horrific dreams the last night of her isolation. In one dream, I was swimming in a big indoor pool (and I caught my reflection in a bathing suit...yikes...) and someone came along and slammed a big heavy metal cover over the top of the entire pool. There was no space between the water and the cover....I was drowning in pitch blackness. I woke up from that to my nurse telling me it was time to give Jill her 4 am meds, for which I have to sit her up, whisper that I'm about to squirt yuk down her throat....she whispers back "otay" with her eyes glued shut, bravely swallows, winces, and goes back to sleep. I couldn't go back to sleep after this. I felt like I couldn't breathe. I simply couldn't take another minute of this. I was sitting on the bathroom floor crying, trying not to picture my life without my little Jill (I've been having those really scary thoughts ever since October....it's like when someone tells you NOT to look at something, you have to look). I almost called Matt, but didn't want to wake him up & worry him more....so I tried to go back to sleep, and kind of wish now that I hadn't....my next dream was horrible. I was being chased by a carload of suicide bombers....it was a heavy-set, dark-skinned man with thick black hair & a gnarly moustache....his eyes were tired and droopy, but he was focused on the road....he never looked at me. The somber expression on his face never changed. Also in the car were his wife and 2 children. They were in a beat-up white Datsun....it seemed as if they had been poured into the car....it was so small. The tires were very worn, like if he went a little too fast, they would just fall off. Each member of his family was wearing the same expression, a mixture of bored, sad, tired. We were driving on the freeway....Matt and Anna & I. They didn't know it, but I knew, that as soon as we stopped, that man was going to detonate a bomb strapped to his chest & his family & mine were going to be blown to bits. I tried as hard as I could to get my car away from his. I zipped in and out of traffic....even whizzing by 2 police cars, assuming they would pursue me and the man would choose a new target, but they didn't seem to notice, or care that I was going 100 miles an hour. Every time I gunned it, he gunned it....his expression never changed. He never looked at me. I knew if I could get him to look at me, he wouldn't be able to do it. He would see that I was a real person, somebody's mom, somebody's wife, and he would take pity on me. But I knew it was over. It was over.

Those dreams were more to me than just feeling trapped by the isolation of the room. They represent feeling trapped by cancer. Whether it's an appeal to God (who controls who lives and dies) or the Spirit behind the Science (????), I want cancer to look at me. Look at us. At our beautiful family. At our friends. Our families. How much we care. How hard we try. How good we are. How could cancer destroy my family? Doesn't potential matter? Doesn't a promise to change the world mean something.....because Jill will do exactly that (hell, she already is, one person at a time). Which leads me to our beautiful story of the day.......

Throughout the course of the day today, Jill and I have gotten to know 2 families whose little children have VERY recently been diagnosed with leukemia. One is a 2 and 1/2 year old girl who is so incredibly scared. Jill has made fast friends with this little one.....even though the girl has not said a word to Jill yet, and barely looks in her direction.....I can tell that being around Jill has given her a little peace. A little bit of "I'm not the only one having to do all this yucky scary stuff". She watched Jill get her blood pressure taken. We talked to her about how Jill takes her medicine even though it's not so yummy. But most of all, Jill showed her how happy you can be despite being sick. "C'mon friend! What are you waiting for? It's so much fun here!" This sweet baby watched more and more intently throughout the day, my little angel girl dancing around in her butterfly fairy costume and casting good magical spells on unsuspecting friends. Later on this evening, we met another girl, 10 years old, who was diagnosed today. Her mom is so strong...I thought she had been here a long time, or was back for another treatment after being out a while. She has been all smiles and confidence in front of her daughter, but talking to her confirmed her absolute terror. She asked question after question and excitedly ushered Jill into her daughter's room so she could see Jill's broviac site (her central line with the tubes hanging out of her chest) as she will be having a similar procedure done tomorrow. Jill bravely sat in my lap while I talked to this gorgeous innocent child.....distracting herself from the family members surrounding the bed and the jargon and the fear of tomorrow with her laptop. She seemed relieved to know that they would be putting her to sleep for the procedure and that she may get to experience a lot of fun things and people at the hospital....that it wasn't so bad. Not at all.
The point of these stories is to illustrate how much of a difference our Butterfly Fairy is making in the lives of scared little kids just like her. One of her nurses today referred to her as the Ambassador of Sick Children. Earlier in the evening, a little boy was wheeled down the hallway and out the door, in his crib....he was going down for a procedure and he was so scared. Jill had previously been playing with him in the playroom and they would whiz past each other in the hallway on their respective tricycles (Jill, by the way, yesterday learned how to pedal and sort of steer on her own!). As he passed us, Jill kept going, "Oh! Oh!" in a very high-pitched, concerned sort of way....she watched intently as the doors closed behind him, then turned to me and said, very somberly, "I sad for him, Mommy." My bleeding heart.

As this day comes to an end, I am constantly reminded of how lucky we are to have so much time to share with our baby. I have grown to absolutely LOVE and RESPECT her, to be awed by her, to be so amused, so impressed, so stunned and amazed that she is the complete person she is. This child is absolutely phenomenal....not a moment goes by that I am not grateful I get to be her Mom. That I am the one who gets showered with kisses and huge, gooey hugs throughout each and every day. That I am the one who hears "I yuv you so muts" and "You my best fwend" a billion times a day. That I am the first-hand up close witness to the awesome wonder of this little personality. The smile that melts strangers' hearts. I could not possibly love more deeply or feel more blessed than I do every day that is mine and hers. May every one of you, my dear friends and family feel a tiny smidgeon of this great love for your own children, and life itself.

All is Well and Sweet Sunday Story

2008-01-15T22:42:00.000-08:00

Wow, it's getting harder & harder to post these days. I feel this intense obligation though, to let all my worried friends and family know what's going on, so let me start by reassuring you all that she's fine. She tested negative for C-Diff today (after about 8 days of antibiotic), which means she may be able to break out of isolation over the next few days, but we are kind of hoping to just duck down and stay right here in our decorated, toddler toy-filled private room as we may be going home in as little as 8 days (just a prediction). Her attitude is as great as ever. She has the language skills of a 3 and 1/2 year old, easily (the articulation still needs some work, which is frustrating sometimes for her...."No mom, I said, 'Yesterday when RoseMarie came in, she gave me a stepping stone kit'."). She serenades anyone who will listen with "You are my sunshine" or "Moon, moon, moon". She laughs, dances, plays chase around the obstacles we set up in the room, balances on the beam, bounces on the trampoline (brought by the PT a few days a week), climbs the "apparatus" (jungle-gym style contraption made out of PVC pipes/connectors lent to us by her "Grandma Rose"), does somersaults (by HERSELF), and begs to be tickled/wrestled with (I need to watch this....she got an awful couple of bruises from doing this on low platelets the other night). We play flashlight games in the dark, lay in the tent propped up on pillows reading funny stories, unwrap and cut up straws and stick 'em in playdoh, do puzzles, watch movies, and read read read. Lately her favorite game is to give me big loud smacky kisses all over my face....each one gets a "Smack-a-Roni!" or a "Smack-a-Doodle!" or other variation and she giggles like all get out. She's every nurses dream patient, and a parent's dream baby. She had a wonderful 2nd birthday here at the hospital. Cici (the M-Th nurses' aide who makes our lives soooooooo much easier and whom Jillian sees as her total equal), drove up to the hospital from Lynnwood with her family to see Jill, who was sleeping (darnit!)....she made authentic yummy food from her native home, El Salvador (she brought a plate in for me today as I missed the feast, having to take Anna home after we opened presents---she needed a nap), and MAN, did it make me want to move to El Salvador. Anyway, my Aunt Susie & Cousin Linda were in town for the big day. They helped Anna make 4 dozen cupcakes (so cutely decorated), 3 dozen of which we gave to the nurses/other patients...and 5 of which Jillian iced herself Sunday & Monday to give to favorite staff who weren't here on Saturday (she gave the most sprinkles to John, the custodian who comes around every night at 11pm and makes all over Jill.....he's the coolest). The Child Life Team really did it up for her, making a brilliant birthday Wizard of Oz themed sign (from which Jill could not pull herself away to open presents...seriously...."No I don't want pesents, I want to yut at Dorsee.") and showering her with gifts, (she just now, today, finally opened the last one....whew!). It was better than we could've ever expected, and so appreciated.

Earlier in the day on that Saturday, I went to the Blood Drive that was organized by our 17 year old babysitter, Kristin. It was once again, absolutely thrilling to be around so many fabulously caring people. Among the attendees that I was able to talk to in the hour and a half I was there were, a 19 year old guy Anna & I met at Vons the night before (he blew up Jill's balloons) who had a good friend in H.S. pass away from cancer. He walked up to the drive and called me on Monday to tell me he had researched how he could donate platelets to other hospitals he could easily get to (in lieu of being able to donate directly to her).......a breast cancer survivor who showed up early to decorate San Pedro with flyers (after seeing our story on the news on Friday) and excitedly informed me that her husband, who works down on the docks, is interested in hosting a Bone Marrow Drive.....many friends and friends of friends, and complete strangers......so many stories, so much love. Kristin called me later in the day to report that they had over 150 blood donors that day (which is HUGE) and 30 bone marrow donors! The staff who ran the drive were all so dynamic and enthusiastic and compassionate. I didn't realize that if we set up blood drives directly through Miller Children's Hospital, they coordinate with the National Bone Marrow Registry to bring in bone marrow donors and the registration fees are completely waived......I am, in a big way, glad that we didn't know this though, because of all of the good that has come of the many fundraisers that have been held to raise $$ for those fees (and the awareness that has been risen because of them).....but looking forward, we are getting smarter about how to meet this need. And we'll do it again! And again. And again. We are all in this together now. What a life-saving journey we've begun.......my friends, my friends.......wow.

It was so wonderful to have my family out this past week. I got to catch up with my cousin, whom I haven't really ever known (we are far apart in age, and she moved away when I was in highschool), and got to know my aunt on a level I never would've known her otherwise. And boy, did she work her magic at my house! I am the clutter queen no longer! Every room in my house has been transformed....it's amazing how I was under-utilizing space! I haven't been home to see the final results of her labor (I've been here at the hospital since Sunday night), but have heard from Matt that I should get prepared. She even hung up PICTURES! A task I've been putting off since we moved in 2 and 1/2 years ago!

So, I'm skipping a bunch of stuff, but I do have to tell one story. Remember my blog entry about Anna wanting to go to church (I ended it with "Maybe Anna can help us all to Go Tell it On the Mountain")? Well, since then, I've gotten her involved in the Sunday school at Holy Trinity Parish (which I am in total love with!!). She loves the teacher & other students & seems to fit right in. She let me leave her by herself this last Sunday (her 2nd time, and my first to attend Mass, in oh, some 8 years....give or take a Christmas service with my parents). Susie came with me. The homily was all about Baptism, which I found to be really sweet, as I have been giving serious thought to having the girls baptized soon. Msgr. Joe was so charasmatic and funny. He joyfully and boisterously sang right along to every song throughout the service, clapping and dancing in his chair (the choir was so beautiful). He called the hospital the week before to speak with me about a visit to my house, but said he'd be out of town for 3 weeks, so I was so happy to be at the last Mass he was to give before leaving town (I didn't know this...he told me after Mass that he was leaving that evening). Anyway, so I was moved....so moved.....just hearing all of the prayers, remembering them, smelling the smells, feeling at one with my people, my family of Catholics who I have been hiding from....there were so many of them!....I was so surprised at the diversity, I don't know why....yes, I do....because I'm from the MidWest and our parish was 90% Caucasian, so I guess I saw it as the White Man's Church....what an idiot....the "peace be with you's", the smiles, the being there with my aunt, the sheer comfort....it was just so relieving. I held back tears the entire time. I listened really closely to every word.....unlike how I remember Mass.....trying to stay awake, tuning out, not feeling connected to this prayer I spent hours memorizing in the 3rd grade.....and it made me feel happy to be Catholic. It made sense. I started feeling excited at the idea that Matt may be willing to do RCIA (classes for people who would like to become Catholic) with me as his "sponsor" so that I can learn more about this religion I was raised in......maybe that can be our date night and we can grow closer to each other through God and our faith-community....oooh, the possibilities! Back to reality.....at the end of the service, the cantor announced, "Please open your Song Book to Page 232" and the music started............................................................................

"Go, Tell it on the Mountain.....over the hills and everywhere......"

Shut. Up.

Susie and I just looked at each other and started cracking up. No way. This is too big of a sign. Ya know? Boy did we move and grove to that hymn. People probably thought we were crazy Baptists in the wrong damn church. We were shakin' our booties and clappin' our hands, belting out that tune like it had never been sung. That's it. I'm Catholic.

When we picked Anna up from Sunday school, I told her about that song. She asked me how it went. I sang the starting line....she stopped me. "I know Mommy. Stop. 'Go tell it on the mountain, all the livelong day.....go tell it on the mountain, just to pass the time away" Which are lyrics from "I've Been Working on the Railroad". My Grandpa Hunn (Susie's Daddy) was a train fanatic. We decided without a second guess that Anna's lyrics were Grandpa giving us kisses from Heaven. You might think it's a stretch, but Grandma knows.

Don't you Grandma?

The Heavy

2008-01-08T05:46:00.000-08:00

As I type this, I am wracked with emotion...how many are there?

Exhausted....a deep, underground, boiling up to the surface kind of bone-a** tired. I attribute it at the moment to the "workers" pouring cement right outside our window (this started at 5:15 am). A bellowing people-slaying dragon-like noise. Hurts my brain. Many things hurt my brain these days. Fluorescent lights. IV beeps. The sweet sound of the babbling brook on Jill's "sleepy machine", which I have, of late, had to turn up so loud it sounds like a raging river (and freaks nurses new to us out every time they enter the room "Oh my god...I thought your oxygen was turned up extra high!"). Perfumes. Cologne. I would love to know why people bathe in scent on top of scent on top of scent. We all have our own natural wonderful distinctive smell....why mask it with flowers or musk or whatever-the-hell-other manufactured chemical is popular these days? I apologize for the rant but I try not to tread on others' space while out in the world and I feel like my space is slammed against a wall when I'm working out at the gym and some lady gets on the machine next to me smelling like the toxic rip away leaflet from Cosmo magazine....cough, cough....guess I'll be moving now.....

Relieved. Jill's appetite is back! She ate like a teenage boy on steroids today. She has gobs and gobs of energy (much thanks to the unnamed donor whose blood infused Jill with a renewed sense of purpose on Monday....maybe that's what I need....a bag of blood should wake me right up....can you overdose on that sort of thing?). She spent the day zooming up & down the hallway, learned how to (almost) pedal a tricycle, did some chalk art with Monica (the artist volunteer who comes on Mondays), dressed-up, made some pineapple-meatball-pizza concoction in her toy kitchen, got her nails done by CiCi (nurses' aide and best friend), played soccer, basketball, and climbed 4 flights of stairs twice with the P.T. (she qualified for 2x/wk with the goal of maintaining gross-motor skills).

Angry (morfs into Frustrated, morfs into Accepting....begrudgingly accepting). Jill's doctor came to break the news this evening that Jill's stool sample came back positive for C-Dif, a nasty infection of the colon caused by too many antibiotics (the antibiotics kill bad & good bacteria....the good bacteria that normally fights off this infection when you have a normal WBC count and are NOT on gobs of AB's has been compromised, opening her up to this...many kids in her situation get it....not life-threatening, just extremely annoying). She will be forced to swallow yet another antibiotic (this one will directly target the C-Dif) every 6 hours (it's no fun being wrenched out of a peaceful sleep to have your mom squirt that nasty junk down your throat..."It's okay baby, you can go back to sleep..." Oh, okay, mom....I'll be doing that with no problem...and no hard feelings...hmmmph). After 10 days on this drug, her stool will again be tested. She needs 3 negative tests in a row to be "cleared" to come out of isolation. Isolation means she is confined to her own room. She is no longer allowed to leave to play in the playroom or in the hallway. We are no longer allowed to leave to go to the kitchen, the soda machine, the cafeteria, as we are at risk of spreading Jill's infection to other immuno-compromised individuals throughout the hospital (it is apparently extremely contagious to those who are not able to fight it). Nurses and anyone intending to enter our room and do anything but march straight back out the double doors (after some vigorous hand-washing), must "gown and glove" on entering. Really, it's a poop thing, and as Matt & I--and nurses on night shift--are the only ones changing her diaper, and we are very careful not to get it on our hands anyway--wouldn't YOU be?--and are vigorous hand-washers, and you have plenty of WBC's, there is very little risk to you, our friendly visitor, of catching the bug, so don't read this as a "stay away" notice---much to the contrary---help me entertain this toddler please!!!! is more what I'm trying to say. Leave the kids at home---I hate that, but it's just safer for everyone, all around. Man, she's gonna need a lot of group hugs from her toddler peers when this is all said and done.

And Sad. So Very Sad. We just found out today that one of our own (child with AML) passed away. She was being discharged from the hospital, at the end of her 6 months of chemo, the day we were being admitted. I met her mom through a friend. She was so excited to be going home that day, but sad for us....and very obviously supportive and willing to be of any assistance she could...where to get good food, how to sleep more comfortably in our new "home". We were devastated to be sharing a room with her daughter 2 weeks later, when she came back with a tumor. The cancer had returned and manifested itself as this ugly unforgiving monster, taking over this sweet girl's entire body....one thing after another went wrong....she passed away on Thursday after the longest fight of her family's life. She was 17. I want so much to attend her funeral. It's on Saturday. I can't do it. Saturday is Jill's Birthday. To be attending the funeral of someone that shared the same awful disease as my baby on what could be (don't say that!) her last birthday (how terrible is it to THINK that???), would just absolutely kill me. I can't imagine what her family is going through right now, and hope against hope I never have to. The reality of this disease is horrific. Keeping myself distracted with bone marrow drives, close contact with friends, keeping Anna involved in school/friends/activities, cleaning my house, scribbling thank-yous and booking interviews with local media (a reporter from CBS is coming to the hospital on Friday to interview us for a news story to promote the blood drive our babysitter put together)....all of these things are simply ways for me to push the reality of what could happen to my baby into the background. But today, I gazed at her so much, with pangs of deep sorrow in my heart for the friend whom cancer took. I saw Jilli disappear....fade into her songs and her dances....evaporate into a memory of a girl with ceaseless energy and unbreakable spirit. I don't want her to be a lovely memory. I don't want to be thinking like this. I will start my moment-to-moment mantra again. Because what other choice is there? Jill needs us to believe.

So I do. Not as firmly as I did yesterday. But I do.

The strength of that collective belief in all of us, in her, will give the status of "memory" to this tiny schnibble of time that made believers of us all.

Slight Change of Plans

2008-01-04T14:39:00.000-08:00

So, after much discussion, and some disagreement, Matt & I have come to the conclusion that having people stay with us (as much help as they have provided & are willing to provide) is more stressful than it is worth. This is certainly not to say that anyone who HAS stayed with us has been a burden or that we have not benefited from the help provided. The main issue is sickness. We are very concerned that, as Jill progresses through chemo, she is weaker & more susceptible to illness.....if people stay with us (in our little bitty condo), especially more than one person at a time, it increases the chances that someone in our house will get sick & pass it around. As Matt & I have no choice but to be at the hospital with Jill, we will then pass it on to her. The other issue is consistency for Anna. Although it is exciting for Anna to always have new people coming into town to play with, it throws her off. She has so many of our friends caring for her when we are not able to, but the routine remains fairly consistent. When visitors come in, we feel like we should let her take a day off school to go to Disneyland or the park, or the visitor will pick her up from school. When we have to go back to the "regular schedule", she is upset.

We are very much looking forward to the visitors we have lined up already (Susie, Linda, Annie, Missy, Renee & Rhiannon), and don't want any of you to feel like you shouldn't come or that you have to walk on eggshells for fear of upsetting the balance while you're here. A few "rules" that many of you know about already are that 1)if you come in on an airplane, you can't come to the hospital for the first 3 days, 2)if you catch a cold or other virus (especially if you're coughing/ sneezing) you'll have to stay with one of our friends or, if you are not comfortable with that, in a hotel, and you certainly won't be able to go the hospital, 3)we probably won't be seeing much of you if you are sick, which really stinks, because you came to help & visit with us, 4)while at our house, we're sticklers on not wearing shoes in the house & on frequent hand-washing.....parents must keep a close eye on their kids for gross kid-like behaviors that may spread germs. Still wanna come? Ha ha.....

We are fully aware that people have only come to help & are only coming because we (I) expressed a need. I feel the need is there to help run the house (menial chores) so that we can spend quality time with Anna & maybe even relax a bit. We have loved seeing those that have visited so much....we've stayed up late talking with them (when we should really be catching up on sleep)....again, not the visitors' fault by any means! But it is so hard to turn off that "let's have a good time" button, and right now, we need to. We apologize for not knowing sooner how this was all going to work. You don't know how you'll feel until you are thrust into this.

For those who have expressed interest in coming out to help, please save your trip to when this is all over (maybe summer?) when we can enjoy each other more & you can feel like you really got your money's worth. We are slowly figuring out how to do this on our own. Thanks for understanding!

God Bless the Child.....

2008-01-04T14:15:00.000-08:00

God is Great.
God is Good.
God will help you if you have a broken heart.

God is fun.
God is quick.
God will fix you if you're sick.
(If the doctors don't know how to fix you).

--Annaliese Litton, 4 yrs old....in the backseat on the way to the hospital

Anna has been talking a lot lately about God & how he cares about her & her "sick sister". She makes up songs about God & asks Matt & I to make them up, too. Last night, Matt said, "You sure do know a lot about God," to which Anna replied, "That's cuz I have the Bible."

I'll be taking Anna to a local Catholic Church on Sunday to see if she likes it. We're not searching for anything, but we think she is. Matt says all the time that Anna's chosen to be a Christian already (nothing wrong with that). I feel the need to give Catholicism another try. To give Anna an opportunity to be raised with a faith-base. It's almost not fair to raise her without one. How can she make a decision to turn away from or deny something she has never been exposed to? And it certainly can't hurt. The community of church-goers is the big draw for me. Getting involved, helping people....fellowship. And the Catholic faith is part of who I am, like it or not. It's my culture, my people. I've tried other churches, and I just feel out-of-place. Like I'm saying their prayers & reading their books. I walk into a Catholic Church, and though I don't necessarily feel drawn to God, I do feel at peace. There are things about being there that make me uneasy & uncomfortable too......kind of like when you go back to visit the home you grow up in....there's all of these familiar comforts, yet a whole bunch of crappy memories too. At least the people change (when I go to my "home church" in St. Charles, it's really weird....when people knew you as an awkward pre-teen who was constantly causing trouble, it's hard to look them in the eye & try & convince them you were never that person....I'd rather not have a past plastered on my forehead). So, we'll give it a go. I'm sure my Grandma will be ecstatic to hear this. Don't hold your breath, Grandma. I can't make any promises.

Maybe Anna can help us all to Go Tell it On the Mountain.

Who's the Sickie?

2007-12-31T16:02:00.000-08:00

So, chemo this time, has taken a greater toll on Jill's body than either time before......quite understandably.....it builds up in her system & just gets harder for her body to take. She has been throwing up every morning & has developed a rash from one of the drugs that just doesn't go away (they can't stop the drug, so they just try to control the symptoms of the allergy). Sounds bad, but it's amazing to watch her bounce back from the tough stuff. She shovels handfuls of scrambled eggs into her mouth every morning (don't ask me how it is that she actually LIKES hospital eggs...I swear, they don't come from real chickens), then looks at me like, "wait, this wasn't what I thought it was" and spits them all out, then says, "Dat's DOSE! Dat's Nasee! (That's gross, that's nasty)", repeating what I say to her every time she does that (but maybe she's referring to the eggs). She'll do this like, 3-4 times until she realizes that she doesn't like eggs anymore. At least not when they taste like metal (which is what most chemo patients say food tastes like while they're on it). Anyway, then she starts to whimper, "Mommy, hode my hand. My body hurts." She barfs, we clean up, then she's out running up & down the halls, dancing with the nurses, practicing balancing on one foot (using the "ballet bar" in the hallway...one of her favorite nurses, Janel, has shown her how to lift one leg up onto the bar & stretch....I'm doing most of the work, it seems, as she's too short to reach the bar), dressing up as various princesses, Dorothy, random crazy people (tap shoes, tutu, & bunny ears, strawberry-shaped sunglasses, Mardi Gras beads, and a magic wand), and pretending I'm "Ryan" & she's "Sharpay" (characters from Anna's new favorite movie, "High School Musical"). Last night, we pretended we were various ocean creatures in the hallway (until about 11 pm)....she was a nice fishie & I was a shark taking bites out of her tail, I was an octopus & she was a seahorse going up & down, and up & down..."Oh no! I dot tandled in you leds! (I got tangled in your legs)". The energy on this one is no match for the fatigue chemo (supposedly) brings on. So, she's fine. And time is flying. Sort of.....kind of depends. I fear the next few weeks are going to creep by as I am her sole playbuddy at least 5 full days a week. Once again, we are open to visitors (especially during the week), if you are pretty sure you're in good health. The next week, especially, as her WBC's have not dropped to zero yet. She'll be unhooked for at least a few hours a day...if I know a friend is visiting, we can try to time the freedom with the friend. Give me a call either on my cell or the hospital phone (we still have our own room 562-933-8327).

Anna is doing much better.....she & I had a break through the other night.....she wanted to pretend that I was a 4 year-old friend who had a sister in the hospital with cancer & she & I talked/played for about 40 minutes with me in this role. It was a bit like "play therapy"....I asked her (in my best kidspeak) if she ever thought her mom was too busy to pay attention to her & she said, "Yeah." I asked her what she did when she felt like her mom wasn't listening to her, & she said, "I sometimes say mean things or do stuff she doesn't like." I didn't try to teach a moral lesson when she said this, but just tried (as her little friend) to identify with her....or I would just not talk about it at all & play like a 4 year-old with her. It was hard for her to let me transition back to Mommy (she was so into it, I told her I was cold & she took me down to her "mom's" room & showed me where she (I) keeps her (my) sweaters...."I'm sure she wouldn't mind if you borrowed one....oh look! It fits you perfectly!"). The next day, we spent so much quality time together....I stayed off the phone & followed her lead....didn't rush her.....let her be herself rather than some stressed out, rushed, other child of mine. She revelled in this role. It was nice, for both of us. And when she acted out....one time hitting me on the leg when I didn't respond immediately to a request, I completely ignored the behavior....I asked her what she wanted for dinner right after she did it, in a very nonchalant way, & she barked, "I don't want dinner from YOU! Uh!!!" and stormed off to her room, slamming the door. I went about my business, & when she realized she wasn't getting ANY attention for it, she came out & said, "Um, chicken nuggets would be great." I refrained from talking to her about her behavior & just really pretended like I didn't notice it. It worked. Not to say it will always work, or that I'll always be able to hold back from trying to "teach her a lesson", but maybe the lesson was learned without me getting on my preachy chair & letting her know who was boss. Amazing.

At the hospital last night, Jill & Anna raced up & down the hall on their respective vehicles (the playroom now has 2 tricycles...Jill can't quite figure them out, but Anna is in Speed Heaven). She had a tattoo on her arm from a packet she got a few nights ago, welcoming her into the "Super Sib" Club.....an organization started by a mom of a child with cancer to recognize the siblings of those who are sick & make them feel important. Anna proudly announced to all the nurses, "I'm a Super Sib!" and pointed out her tattoo. It wasn't long before Jill began telling the same nurses, "I'm a Super Sib, too!" Anna started hearing Jill say this and quickly rushed down the hall, pulled her trike right in front of Jill's car & stated, most emphatically, "No, Jillian. You're not a Super Sib. You're a Sick Sister." Although this is true, in theory, we're not convinced.

Happy New Year Everyone!

Round Three

2007-12-27T19:49:00.000-08:00

Being at home for Christmas was fantastic. We decorated the house a bit, made cookies (Anna is quite the baker, and Jill is very good at unwrapping, and eating, Hershey's Kisses), drove around looking at lights, and were among a handful of guests at a Gingerbread Making Luncheon at the Hyatt in Long Beach. The joyful moments that led up to Christmas were just as beautiful as Christmas itself. We went to a Presbyterian Church Service at St. Peter's By the Sea on Christmas Eve & the girls marvelled at the presentation of the Christmas Story by a bunch of kids just like them. Jill danced in the aisle much to the delight of fellow church-goers and Anna sat up front bravely among the other little people, none of whom she knew, and participated as best she could in the singing. After church, we went out to dinner. It was really nice to eat at a restaurant with our family intact, among VERY few people, and not have to clean up our mess :) Christmas morning was so relaxing....the girls were excited to find the plate of Santa's crumbs (among which were half-eaten carrots for the reindeer, an orange peel for Santa's elf "Shinglyschmoop", and an apple core that Santa himself left, all because Anna thought Santa should be eating "healthy snacks, not just sugar"...that's my brainwashed girl). The first presents they opened were socks (as I explained to Anna, sometimes Santa brings you what you want, sometimes he brings you what you NEED)....Anna halfheartedly tossed hers aside, "Oh, socks." while Jill danced around the room with a huge grin & her socks bunched under her chin, "Oh, sots! Sots! I yuv sots!!!" (Difference in age? Personality? Both?) Anna perked up a little later when she opened a package of underwear......High School Musical Underwear. The morning went so smoothly....each girl would play with her toy or read her book right after opening...there was no rush. We didn't need to ransack the place or hurry up to reach the end. It seemed there WAS no end. After a few presents, we stopped for breakfast, omelets & scrumptious homemade cinnamon rolls made with love by our friend, Renee (whose family celebrates Christmas with that tradition each year). Then back to gifts....there were so many from friends & family....Nutcrackers of the Lion/TinMan/Scarecrow, a dress up trunk filled with fancy schmancy dresses & accessories, books, trains, the Nutcracker Theater Book/Paper Dolls, Colorform Dresses for Princesses, art supplies, dolls.....Santa was extremely good to our girls this year, thanks to all of you. After lunch, Jill took a nap, and Anna & I walked to a few friends' houses to deliver cookies. We joined our San Pedro family, Dina, Jim, James & Mikayla, for dinner at their house. The girls had a blast, as usual. Jill really sees them as her surrogate family (as does Anna). They are just such wonderful people. It was a magnificent holiday. And the first that we've spent as a family of 4 in our own home! We were where we should have been this day.

Day after Christmas brought the dread of going back to the hospital. I was having a rough day, feeling tired & run down from all the excitement & lack of sleep (my own fault), and as I've told many of you, for me, the anticipation of a dreaded event is usually way worse than the actual event. Jill was her typical jolly self, but Anna had various "problems" throughout the day that earned her time out after time out, which led to her stating she was going to get out a gun and shoot me, which led to me spanking her, which led to me feeling guilty for spanking her (even after she laughed in my face & said that it didn't even hurt), which led to an out-of-control spiral downward for the both of us until we landed in the hospital (that sounds pretty bad, huh) face to face in Jill's new (old) room hugging, crying (me) and saying goodbye for the night. I told her I was sorry I spanked her but I just didn't understand why she said what she did. She nodded, patted me on the shoulder & went on a little rant about wearing a hat versus wearing a hood. As she was leaving with Matt & I was sobbing because I just had the worst day & just didn't want to do this anymore & Matt was hugging me saying I was the best mom & the best wife he could ask for (what does that say about HIS standards?), I said, "Why am I the only one crying here?" Anna looked up at me with a smirk, shrugged her shoulders and said, "Yeah, why are you crying? This is a 'little thing'," parroting back what we always say when she goes on about perceivably insignificant traumas. Good lesson.

Rewind: when we were sitting in the car waiting for Jim & Matt to lug 3 loads of stuff up to our room, Anna in her carseat asleep, exhausted from fighting with her 32 year-old mother, and Jilli bundled in her jammies & winter coat in my lap in the front seat, excited to be "at the wheel" for the very first time!!, we were listening to Jack Johnson's Lullaby CD, and I was crying, not even trying not to...I mean, I'd been doing that all day, why stop then?....Jilli took my face in her hands & looked SO imploringly into my eyes (like a SAGE...she was freaking me out), and said, "Mommy, don't be sad. Why you sad?" I offered the real reason to her (like she was going to get it or something), "Well, Jill, I'm sad because, today, we go back to the hospital, and you won't get to be home with your sister anymore for awhile, and I'm going to miss you being at home." And she said (like she totally DID get it), "Don't be sad about my hapitoh (hospital). I be here with you. Close you eyes." I closed my eyes. She brushed her baby hands down each of my cheeks. "Open you eyes." I opened them. "You feel bettuh?" I said I did. "You be happy Mommy. I yuv you."

Which brings us to today. Jill sailed through her bone marrow biopsy & spinal tap like a trooper. (Won't know the results until next week, but I'm assuming the best, and that's rare for me.) She woke up all loopy & scattered as usual, it's fun to watch....she's just like herself, only more mellowed out. She hugs everybody even more, and holds on longer. It's sweet. One of the nurses in recovery today (Janel) said that she wonders if how kids are coming out of sedation is any indication of how they'd be intoxicated as adults. Jill would be the one at the bar buying shots for everybody & kissing the bums in the alley. Janel was called to be a bone marrow donor yesterday, by the way. She'll know in 3 weeks if she's chosen, and will keep me posted on her experience. I'm excited to see how it turns out. What an honor. I got goosebumps when she told me.....

The San Pedro Bone Marrow Drive is a week from Saturday. A reporter from "More", our local Pedro paper, is coming to the hospital tomorrow at 10am for an interview. Hopefully the article will be in Saturday's paper so that the drive can be hyped. So many people have put so much work into getting the word out, fundraising, and supporting this effort. We are so impressed with the lot of you.

I've been getting a lot of positive feedback from people about how Matt & I are handling this. More about me, because I'm the one who puts it all out there in public (Matt is the strong, silent type). I appreciate the kind words & encouragement, but I certainly do NOT feel I am handling this well at times. There are a select (lucky) few who get to see me broken & out of my head about all of this. It's hard to reveal that side to people. I actually only do on occasion because I can't avoid it....I'm getting better at not feeling bad about feeling bad, but I'd still really like to keep up the facade that I am sailing through this storm with a smile on my face. Maybe it will comfort some of you to know that it is, in fact, a facade. Kind of like people (me included....in a big way) who send out photos of themselves and their families...in every photo, there are smiles, & laughter & hugs & kisses, & sunshine & daisies. Are some families just happier than others? Heck no. You think I'm going to send pictures of me losing it on my 4 year old? Or completely unproductive for a 3 hour stint on the couch in front of the dumb tv while my kids pull each other's hair out & wreck the house for lack of attention? Or snorting cocaine while downing a 5th of vodka (oh crap, I wasn't supposed to let that cat out of the bag)????? Yep. So, human to human, thank you for caring enough to read my journal. If I haven't thanked you personally for your card, gift, or service to help my family through this yet, don't hold your breath. There's too many of you!!!!! It never ends!! But seriously, we appreciate each & every act of kindness, and will send them back out into the universe when this weight has been lifted from our shoulders. We promise.

Hope everyone had a wonderful Holiday. Now go outside and breathe in some fresh air for me!

We'll be Home for Christmas!

2007-12-19T14:05:00.000-08:00

The doctor saw Jill today...she is concerned that if she is congested tomorrow morning, they will not be able to sedate her. Her ANC is back down in the "normal" range (3000), so the doctor feels confident that we can wait another week to start chemo. So......as the title states, we'll be home for Christmas! I'm so excited!! There's so much we get to do now! We're going to the Hyatt Regency in Long Beach tomorrow for a Gingerbread House Making & Luncheon (for parents, kids with cancer & their siblings)...it's supposedly a really big deal...they only had 14 invitations, and Lori, our social worker, seemed really happy when she found out we could go! What an honor. Then to Candy Cane Lane for Christmas Lights (anyone want to join us? maybe Sunday?), we'll make cookies (I wasn't planning on it, but we have so much more time now!!!), Santa will have time to wrap presents...heck, we might even be able to make a few gifts! So, Merry Christmas everyone! It's going to be much brighter for us with our family all together AT HOME.

To Miller's or Not to Miller's?

2007-12-19T09:20:00.000-08:00

We may go back to the hospital tonight....depends on Jill's cold....her ANC is 10,000, which freaked me out (they told us that they want to start chemo when she gets up to 1000 or 1500). All this means is that her body is fighting an infection...her healthy WBC's are doing their job. Healthy people typically have between 4000 & 13000 WBC's (the number is higher if you are fighting an infection). Anyway....Jill's doctor is not too fond of letting kids "hang out" at a really high ANC for too long (risk of leukemia cells coming back), but she deems herself more conservative than the other doctors in the practice...she said they would probably be fine with her staying out until after Christmas, as there is no scientific data to show that the longer your #s are high, the more risk involved. So confusing! So here we are...she was scheduled to go back tonight, BUT, she's REALLY congested right now, and they don't want to sedate her (for her lumbar puncture & bone marrow biopsy--both of which are mandatory before starting chemo) if she may have trouble breathing. We may be home for Christmas yet! (Don't know how I feel about this...kind of just want to get it over with, and it's so much harder to go back after being home for so long).

This morning, she woke up bright & sunny, as usual...excitedly pointing to her dresser "There's Dorsee! There's Dorsee!" I laid her down for a diaper change & she said, "Anna upstairs in the playroom watching TV. I wan see my sister. I yuv her." At breakfast, she said, "My medicine ha yittuh bit uh yodurt in it (that's about right...yuck!)." She & Anna are playing together with the Little People Hospital Shana bought Anna for her birthday (I let Anna stay home from school today). They are such great friends (with the every-5-minute squabble). I'm so glad they have each other. And regarding going back to the hospital, the girls both seem much more prepared this time...like they understand so much more. And neither girl seems sad about Jill going back in....Anna will get to spend more time with Johnny & Addie, Keili & Keira, Mikayla & James, & Jill will get to be the hospital celebrity again! And I'll get to not to do chores around the house all day! (Being here 24/7, it's amazing the mess you create). More when I know what's happening (waiting for her dr. to call back).....

Weekend Update

2007-12-16T10:05:00.000-08:00

So, we've been home since last Saturday and what a wonderful stay at home it has been! Jill & Anna have gotten to spend so much quality sister time together (hugs & pushing down included). We have gone on a few walks, visited a few parks (Anna suggested Peck Park one day and Jilli said, "No Anna! Dat's a sandy part (park)!"), played in the snow (ice) on Mesa St. in San Pedro, danced around to Christmas music in front of the stage, acted out fairy tales (the same 3) over and over and over (props or no props), read lots of books (Jill's really into Nursery Rhymes right now...she can recite a ton of them all on her own..she read to all 3 of us this morning..it was soooooooooo cute!), put up our fake Christmas tree, attempted to decorate a gingerbread house, and did a mess of chores (that would be the grown-ups). Life is normal again. It's amazing how quickly we all can assimilate. Jill still talks about the hospital every day....especially CiCi (the nurse's aide). Yesterday she said, "The nurses are my fwends." I know she won't be sad when we have to go back, but it sure is getting harder for me to face....maybe it's the Holidays or all that I know we'll be missing while we're there. It's just the most enormous inconvenience I can imagine, and though the end is in sight....we still have so long to travel. We're just so thankful that Jill is HAPPY and (seemingly) amazingly healthy!!!! Anna has had a rough cold since Jill got home, but Jill isn't showing ANY sign of having caught it! She is such a hearty gal. Spunky. Totally spunky. I'd like to share with you some of her little ramblings from the past week:

"You ha pitty hair. I wan tutsit (touch it). Wee-hoo!" (she says this at least 5-6 times a day, maybe because we crack up every time she does)

"When Daddy all done tsainz my bopper, I tum pay wif you."

"You don't weed to me, Mommy. I do it all by mysef."

"Doh away Anna. I don't yike dat."

"I be Dorsee. You be Wicki Wisssss....."

"Don't see me! I will hi (hide) fum you. I doh wun away!"

"Wha you fawit (favorite) tuyuh? I yike bwu. Maybe you tan twy a marter (marker)?"

And my favorite....if you make a comment & don't have your facts straight....

"A---su-yee (actually)....."

We are going to Manhattan Beach tonight for Christmas Carols & Fireworks. It's a tradition. And I'm so glad Jill will get to be there....it will be so much more special to us this year.

We will find out on Monday if we return to the hospital sometime this week (that's my expectation). Will keep you posted.

The Torrance Bone Marrow Drive was a HUGE success.....195 new donors & at least 60 gave blood. I will post more on this later.....but must give TONS of credit to Ann Gerlach who planned & organized the entire event. Many others helped! It was amazing!!!

Have a great week, everyone!

Bone Marrow Drive This Friday!!!

2007-12-11T19:20:00.000-08:00

Blood & Bone Marrow Drive
Friday, December 14th
3:00pm-9:00pm
Torrance High School Annex Cafeteria

If you are planning on coming and have not let us know please RSVP to ann@getswabbed.org. Caucasian donors can help our fundraising money stretch farther by also signing up for a blood appointment with the Red Cross at www.givelife.org (sponsor code = Jillian). There will be a $10 fee for Caucasian donors who do not give blood. People of all other ethnic backgrounds are free!! Please bring your drivers license and the name/address/phone #/e-mail of two people who do not live with you. The NMDP will not contact them unless they are looking for you! Thank you for your suport!

Ann Gerlach :)

Home Again, Home Again, Jiggity Jog

2007-12-10T00:05:00.000-08:00

Well, so, surprise! Jill was sent home Saturday night. No more cough (that was fast) & her ANC is around 300 something (it had hit 600 something, so they knew it was on the upswing, & felt confident it would be back up soon). The Dr. predicts she'll be home at least a week. We're so excited to have her back home!! She is such a little ball of sunshine. Always happy, always excited about everything. Cousin Kevin is staying with us right now (he got off the plane & said, "Operation Holy Crap is UNDERWAY") & she just loves him to PIECES. They've been playing all kinds of games & acting out fairytales & he's been teaching her phrases like, "Get with the program, Oprah" & "tastes like chicken". Her language continues to blow me out of the water!!! Tonight she said, "When Daddy done sainzing my bopper (diaper), I pay wih dis (Kevin)". And I'm so impressed with how she handles discomfort/slight pain & changes in her routine! For instance, when she got stabbed in the hand for an IV placement (for a kidney test) on Friday, she looked at me like, "what just happened????" & said, "See (she) hurt my hand!!!"...her chin quivered a little, but no tears. Tonight, I took the tape off her chest that held the plastic bag over her "dressing" that absolutely cannot get wet (for her bath)...it hurts, I know it does....it's TAPE...worse than a bandaid....way more surface area....sensitive parts of the skin (like her armpit, for instance)....I talked to her about Frosty the Snowman ("and what happens when he loses his hat?" "He tan't talk!" "And how about when he gets hot?" "He met (melt) away! And tids det sad (kids get sad)!") and before she knows it, it's over, & she is being praised up & down the block for being such a strong, big girl. Which she totally IS.

So, to backtrack....while Jill was confined to her room, the Child Life people never forgot her....they always sent special visitors to HER....we had volunteers make hand-painted aprons with her one day, a woman from the Long Beach Symphony come in to play her flute for 30 minutes while Jill danced around the room, our friend, Amy from Sunshine Kids, came to help Jill make Christmas cards, and Pandie/Huxley, Jill's 2 favorite "little" dogs let her pet them & give them treats. Friday was an excellent day for Jill & I. Santa Claus came to visit her in her room (and gave her a really nice gift) and we spent the next 2 hours on the first floor (they finally let her leave her room...with a mask) taking part in a HUGE event called "Santa's Workshop" sponsored by Tucker, the construction company that is building the new wing on the hospital. They had games & crafts, tables loaded up with toys & gifts that Jill could "buy" for every member of her family, then gift wrap with some volunteer help, yummy food, face painting, and caricature sketch artists (hers turned out so adorable!). Staff from Tucker slipped some gift cards for "mommy" in her bag, as well. It was so much fun!! The adoring comments made by so many people there about my baby made me feel so happy & proud to be her Mommy. The IV & kidney test (standard protocol at this stage of the game...and all is well) made me even more proud of her. Lise came that evening & stayed with her while Matt & I had a nice romantic dinner at a cafe right down the street from the hospital...we ran into a co-worker of Matt's at the Long Beach Historical Society building & had a very nice chat with he & his wife before Matt headed back to the hospital to spend the night, & I went off to pick up Anna from Kristi & Ian's. Saturday was a whirlwind day of "is she coming home or not?" while Matt waited to hear what the doctor had to say. Kevie went up to the hospital to move us out while I frantically cleaned for 4 hours straight while Anna played on her own (she's getting so much better at that) & fell asleep on the couch watching Mary Poppins. We went to Mikayla's 8th Birthday Party at Olivia's Tea Room shortly after Jill got home, which brings us to today....Anna's bday party at Ryan Park. Which was awesome. The weather was amazing, but even MORE amazing is the work my friends did to execute my plan of a fun & exciting day for our big girl. Rebecca brought balloons, Ann got food & drinks, Heather made games, Jannah brought more food & carted loads of stuff (including the games to the party), Renee made cupcakes, Sharon played guitar (complete with fun Wizard of Oz lyrics sung to the tune of "Down by the Bay"), Cristina brought a pinata, Sam brought plates, soooooo many people helped set-up & clean-up, Dina videotaped....the list goes on!!!! We could NOT have pulled off such a feat alone. It was so wonderful for Anna. She had a BLAST!!!! We had a blast! Jill stayed home with Kevin (on HIS actual birthday) because so many kids are sick right now (6 of Anna's friends could not come due to illness) & we didn't want to risk Jill catching anything. Anna went to bed tonight with a fever. Let's hope it doesn't spread....but I'm assuming it will. It would be miraculous if GiGi didn't catch it! If she gets a fever, she immediately goes back in. Ugh. Anyway, tomorrow's plan is for Kevin to entertain Jill upstairs (or rather, Jill entertain Kevin) while I contain little sicky downstairs, and Matt comes home as soon as humanly possible from work). I wish Kevin could stay forever. It is so nice to have him here.

Okay, I have to go to bed, but I MUST mention (MENTION? rather SCREAM & SHOUT!!!!!) that the Bone Marrow Drive held at Sts. Joachim & Ann today in St Charles, MO (plan conceived & brilliantly executed by my DAD, with many willing volunteers) inducted a total of:

232 NEW BONE MARROW DONORS

Wow. And that, with an ice storm. Impressive. God Bless All of You!!!! We heard a handful of inspirational stories from today & would love to share more of them on the blog. As you think of them, jot them down & shoot me an email. I am moved by the love sent out to us from so far away & only wish we could've all been there to witness it.

Happy Birthday Great-Grandma Hunn. "May the Dear Lord Bless You!" From Jillian's lips to God's ears. That doesn't taste AT ALL like chicken.

Much Improved

2007-12-06T18:40:00.000-08:00

Jill is doing much better..still coughing & wheezing, especially when she sleeps, but the dr's have kept it under control with steroids (which make her hungry--GOOD--and moody--LAUGHABLE ... a 2 year old with a mood-control problem ... isn't that a given?). She is now yelling at Matt about something ridiculous while I take a very short computer break. He is going home tonight (I am now going on 48 hours here, but it's more hassle to go home & fight with a very tired 4 year old who has been at Disneyland all day...thanks Dina!) to get her to bed in time to get up at 6:30 so she can get to her RaceCar Driver's house at 7:15, so I can be back here at 8am. And making a lunch, and getting caught up in what a mess my house is (no thanks to Cousin Kevin, who arrived yesterday and hasn't done a darned thing....have fun at Disneyland, did ya, Kev? Hmm? Hmm? I'm KIDDING! I just hope you're prepared for how dirty our bathrooms are Buster Brown.)

Okay, so Lise is coming tomorrow (barring surprise illness) to stay a while with the "J" Bird so Matt & I can go out to dinner (with a gift card from Rebecca & Johnny). Matt will spend the night with Jill due to her coughing fits, and I will take Anna to ballet in the morning & do last minute touches for her bday party on Sunday. It's gonna be so great (thanks to 20 or so very wonderful friends that are pulling it off FOR me....I'm so excited!).

Thanks for all of your phone calls & notes, & emails, & gifts & donations & prayers. We are doing okay. Can't believe Christmas is just a few weeks away.

Pneumonia

2007-12-03T22:34:00.000-08:00

Unfortunately, Jill's cough has gotten worse......she had a chest & neck xray last night following this terrible croupy cough & trouble getting air in. They put her on a narrow board, strapped her arms down by her side, tilted the top half of the board up so her head bent back (she was looking upside down), put massive headphone looking things on either temple & snugged them up, then taped her forehead & chin to the table (if you can picture this)....she fussed for me, I talked to her (they wouldn't let me stand next to her), and she calmed...."Mommy's right here, Gigi. Let's sing a song...." "Otay, Mommy, otay...." I started to sing & the tech said, "Shhhhh...I want her to cry (the inspiration would help make a better picture for the xray)." Ummmmmm....so, I'm supposed to pretend I'm not here while my poor little baby is strapped to a table, scared out of her wits? Okay, if it gives you a better picture. Gulp. "Mommy? Mommy? MOMMY?" Deeper, quicker breaths....quicker, quicker, sucking air for a huge explosion....SNAP,Click...."Okay, Mom, go get her." I dash...."It's okay, it's okay, it's okay....you did so GOOD!" I help get her unstrapped, untaped (OUCH), she's shaking, I'm shaking, she grabs onto my neck & wraps her legs around my waist, I start to sob. "I'm so proud of you, baby. I'm just so proud of you. You're such a big girl." She pulls back & looks at me, beaming. "Tan I have a Pwincess Stickuh?" I beam back through the tears. You can have THREE! She picks her three....Snow White, Sleeping Beauty, Cinderella. It's a trio. You can't just have one....or two....the tech walks by, "Oh, which one are you going to pick? Only one....." Screw her. Are you kidding me? I say, "Cinderella it IS." as I hand Jilli Cinderella & put Snow White & Sleeping Beauty in my pocket.

She didn't sleep much at all last night. They started treating her for pneumonia today with breathing treatments & a different antibiotic. The nursing situation is a mess as far as we're concerned. Our nurse yesterday & today missed so much, some of which was no fault of her own, but it's no fault of mine either. I expect that when my child is sick & needs a certain medicine, she'll get it....not another one that she really shouldn't be getting or that one will be skipped because of an "oversight". Thank god Matt brought a lot of the mistakes to my attention...I was too sleep-deprived to notice. The dietician is phenomenal....she is giving us a lot of good ideas about different foods to try (Jill is having a tough time eating, mainly because it hurts to swallow) & she researches new "whims" Matt has along the anitoxidant or herbal supplement trail rather than blowing him off.....she spent a good deal of time talking to him via phone today about a supplement he inquired about. So, with the difficult times, there are smooth ones. It's a balance. I am disappointed at times, but extremely pleased at others. What more could we ask for? This is Life. If it were easy, what would any of us have to do?

Matt & I feel that no one should come visit until the pneumonia has cleared up....we can't go introducing other random viruses (that you may not know you have) until this one is completely gone (and please send your prayers/positive energy for full recovery from this.....a friend of ours is in the I.C.U. with pnuemonia right now...same cancer diagnosis....it could turn for the worse fast). Please also pray that she doesn't have strep throat. This is one of the 3 top killers for kids in this situation. As well as she has been doing so far, this ugly disease is certainly not going quietly......it reminds us how precious every second of play really is. Another reason why I may not answer the phone when it rings (I haven't given out the new room # mainly for that reason...one phone ringing when I can't answer it anyway is plenty...and the room phones don't have off switches). Jill needs every bit of love and attention I've got....Matt too. He is doing a lot of this work too....don't want people to forget about him just because I'm the "voice" of this blog. He is inspiring to me in his love for our baby & our family. We got to go out on a date the other night (thank you Lise!!! I just realized your name is not spelled traditionally......sorry about that!). We had a very romantic dinner at Think Bistro in San Pedro & I was reminded of just how much I love him. I am so proud of his strength & will to make this better. He is truly the backbone of this family. And SUCH an atypical husband! He cooks/cleans/shops/cares for the kids....all gladly. As if it should never be a question. We have a very EQUAL relationship. We respect each other greatly (at least, I hope he knows I respect him.....I can get a little out of line at times) and love each other tremendously. He'll post one of these days, maybe. If either of us should be a writer, it's HIM. Okay, enough.....I have been told firmly by a few close friends that I should be in bed by now.

Thanks for all the hard work you're putting into the drive, Mom & Dad. I'm sure it will be awesome...the quantity doesn't really matter.....it's the love behind it, and the awareness you're raising. We are not comparing efforts from one drive to another, so I hope no one who is helping with one feels that way. I want you all to know how much we love you & appreciate every little thing you do & say to help support our baby through all of this.

Cousin Kev comes in on Wednesday.....hope he's bringing his apron, toilet-scrubbing gloves, & butler outfit. Boy do we have a job for him.

Garage Sale Success!!!!

2007-12-03T22:14:00.000-08:00

Thanks to all who worked so hard putting on the Garage/Bake Sale to raise funds for the upcoming bone marrow drives. We grossed over $5000!!!!! Thanks especially, to Ally & Dave for giving up at least a week of their lives & opening their home for this massive event. Thanks to everyone who donated items, helped organize & sort them, hung up signs (Danielle & Sallie), moved furniture at 5:00am, baked (and bought) goodies, hung up/passed out fliers, manned the cash register & front table (especially the 2 Shaaana's, Brenda, Dina, Jim, Mikayla & Don---random shopper who offered security for a good 2 hours), passed out more flyers for the bone marrow drive all up & down Pacific Ave (another "shopper" named Lucy, and her beautiful daughter), helped watch the kids of the helpers (THAT was a big job....the 2 Ally's manned the fort most of the morning--that was probably the most exhausting of all jobs), helped sell, helped move, helped load, helped clean, helped count cash.....etc. etc. etc.!!! There were so many beautiful stories from that day.....I am waiting for people to get me their favorites so I can post them all here (I think everyone is still recovering at the moment). I will share a few:

A woman named Alyce attached pretty little rainbow notes to green bracelets which read "Tell Cancer to Take a Hike" for us to pass out/sell.....we did not know her....she happened upon the blog & was moved to action :)

A man came by & made a donation in the name of his 5 day-old baby, who passed away recently after being born prematurely.

Another man saw Jill's poster at the bank & made a donation....with tears in his eyes. Gave me the best hug ever. Didn't even know him.

Numerous friends & friends once, twice, and three times removed came to help (Beach School Family! You are Wonderful....thanks especially to Teacher Sandy & Tim!) & to buy, and to love all of us.

Our local Councilwoman, Janice Hahn, came by to show her support as well! It was wonderful to see her happy smile & to know she cared. Thank you, Janice, for believing in San Pedro. My husband & I did not grow up here, but feel now as if we have....I've never felt such a sense of belonging & community as I do here.

Thank you once again to the Pedro Planning Team for their vigilance with the GetSwabbed campaign! Ourania, for creating, and Shana, for ordering the shirts....and selling them with gusto! It is so empowering to make change happen, isn't it? Who knew just a few people could make such a huge difference.

I have so much else to share, but do not have the time or energy to do so right now....I need your help to share this story. Please email me at squashdiddlydoo@msn.com before you forget what an amazing day this was! (I don't think I ever could!!). Pictures to be posted soon.

I have not forgotten the gobs of people who do not know our family personally, who made sizeable, and (collectively sizeable) donations to the cause. Every little thing you do is MAGIC.

Fiasco Central

2007-11-29T00:22:00.000-08:00

Jill had a rough day yesterday. She woke up nauseous & ended up getting sick to her stomach after a few bites of breakfast....took me forever to get her anti-nausea meds because the doc was in rounds & couldn't tear herself away. We have had a different nurse every day for the past 5 days (on every shift) because we are not on chemo anymore right now & they only have so many chemo nurses to go around....they are pulling nurses from other floors, nurses who have very little to no experience working Hem/Onc. It's frustrating, for them AND for me....I feel like I have to re-explain every single thing every day....no, we don't take that orally, why? because, well, see, it's a long story....and yes, we do need a sedative for dressing changes because she FREAKS OUT when we have to do them once a week....and why doesn't she have a standing PRN order for Tylenol? Why do we have to wait 5 hours for the doctor to put an order in for her to get platelets???? We got the VERY LAST bag last night around 6 pm....they now have to order more from the Red Cross, and it will be at least 24 hours before one is ready....if she had to wait 24 hours for platelets as bad as she needed them today...her gums were bleeding, she was bruising on sneezing! It was absolutely a ridiculous day. (By the way, if you ever donate blood/platelets, try to give directly to a hospital as the Red Cross, understandably so, charges hospitals for them). So, she was feeling sick all day....sleeping a lot....and towards the end of the day, started getting low-grade fevers. By 10pm, she was really warm....but cooled down just in time to NOT have blood cultures drawn to test for bacteria. (If she gets to 101.3, they consider it a "spike" & automatically draw cultures, then start a 48-hour antibiotic, which, if tests come back positive for bacteria, turns into 14 days; if tests are negative, it's likely a virus & will just have to run its course....may take longer in kids that are "neutropenic", meaning very low WBC counts.....this is why she can't go home while "recovering"....if she spikes a fever at home, we may not be able to get her to the hospital in time to get it under control).

Okay, so she finally crashed at 12:30am Wednesday.....at 6:30 am, her nurse woke me up to tell me (as gently as she could) that they were moving the entire unit down to the 2nd floor (General Pediatrics...they had moved those kids to another wing) as they needed to start construction on our floor (we were all under the impression that this wasn't going to start until Spring). I was like, "okay", and started packing....Jill woke up right as I was finishing (mind you, we just moved 2 days ago into this room) & I carried her down while the nurses aides took the crib & a huge wagon full of our stuff. We got settled in another private room....it was big & bright, but old & ugly & there were workers on ladders right outside our door working on something in the ceiling....dust was flying everywhere....the nurses seemed pretty concerned about this..."Let's close your door".....the filtration system on this floor is not as efficient as the one on 3rd.....we were all worried about that. The reason the Hem/Onc (Hematology/Oncology) kids are isolated on that unit is due to the HEPA Filtration System.....she was now going to have to wear a mask when in the hallway or playroom because the hallway isn't filtered. Makes no sense. Those silly masks don't even FIT her. What's the point? And now, her much anticipated playtime sessions were going to be cut from 2 to 1 so that General Peds & Hem/Onc kids could have dedicated sessions, with maximal cleaning by volunteers we don't have yet going on between sessions! So, as I'm putting all of our stuff in drawers, closets, cabinets and pondering things I cannot change, the nurse walks in & says, "Man, I wish you weren't so efficient (implying that I unpacked prematurely). We're moving back upstairs." Apparently, the doctors were not fully aware of this move & were livid that it was happening. They were adamant our kids weren't completely safe down there, so they shlepped us all back upstairs.

Soon after this ruckus, Jill spiked a fever, for real. She is now on antibiotics & Tylenol....Matt is with her (he is mostly over his cold, but not completely....I needed to get outta there for a night & see my favorite soon-to-be 4 year old, who called me "stupid" & said she didn't want to be my friend because I was walking behind her down the hall & she wanted me to walk in front of her....she yelled in my face & I nearly whacked her.....ooooooo. I'm running outta "what'sa matter honey?" I gave her a good "talking to" & she broke down & sobbed, "I want my Daddy, and my sister & my mommy all at the same time!" Man, this is TAXING. One can break into little pieces over such madness. I fear I am headed for the cliff sometimes, I swear.

I really need to get some sleep.....a lot of wonderfully special things have also happened in the past few days....I will share these in my next entry. I promise the next one to be more uplifting!

My thanks & PRAISE for the Garage Sale Committee.....this thing has taken off in such a big way! You are all so dedicated & amazing. I hope you know how much we love you & I wish I could help more!! I will be there Sat morning. Can't wait.

Cousin Jessie, for the "Jellybeans for Jillybean" campaign in St. Louis....putting cans out at various restaurants & her hospital where she is a nurse.....over $500 was raised in just under 2 months time. We are stunned. Thank you Fam!!!

Immediate thanks (and then I really need to crash) to Shaana the RaceCar Driver, Dina/Jim, Jannah/John, Kristi/Ian, Lisa & Michelle for being on call all week to take care of Anna & stay with Jill so we can have a rest....or a much anticipated DATE (please pray for nobody being sick on Friday!).

Oh, and Cousin Kev......get your flu shot, and wear a gas mask on the airplane. I'm serious. If you get sick, we're sending you home & putting a moratorium on any "by-flight" visitors. Poor Mary was sicker than a dog, and ended up going home 4 days early!! It's unavoidable and no one's fault, but such a complete bummer. As is 6:00 am, which is FAST approaching. I'd wish for more hours in a day, but that would just draw this whole cancer-thing out, so time.....FLY!

Emotional Roller Coaster & Pleas for Playmates (and/or Facilitating Adults).

2007-11-25T16:00:00.000-08:00

Don't know how long this post will be as Jill is due to wake up from her nap at any moment. I've been really feeling emotionally drained over the past few days...like, it's hard for me to smile & make eye contact, and speak up so I can be heard. I'm having a really hard time blocking out little distractions, like the tv on while someone is talking, or Anna's voice while I'm trying to type an email, or the lights on too brightly, or 3 kids dancing around & having a great time right in front of me. I had a sore throat when I woke up on Friday morning and because of that, Matt was Jill's primary caregiver from Thursday at 5 pm to Saturday at 8pm (at which time, our friend Jim kicked him out & stayed the night with Jill, because by then, Matt had it, too). Now, my sore throat seems better, but who knows? It's so hard to judge when you're contagious, sometimes....and she's so at-risk right now. If we had a choice, neither one of us would be here....but we have no one who can stay around the clock with her, and know how extremely taxing it would be on her emotionally to be without us, always assuming that we're going to come back at any moment...she's so little and dependent still. How much would that lower her immunity, to be sad because her parents left her....we don't know what to do. Anyway, I'm here now, and she just woke up....so I guess I'll finish this later.

Well, it's the next evening kind of later, and it's amazing to me still how much of an emotional roller coaster this is. I went from being completely down about this whole thing...the novelty had worn off...I was DONE....just wanted to get outta here, but they moved us to a private room because she was coughing so much, and that has made all the difference. Not having to share your space, your conversations, your light, your energy, the sink....not having to worry that your roomate or his/her nurse or visitors are going to wake your kid up when she really needs to sleep (can't tell you how many times "naptime" was cut short because the roommate got a gob of boisterous visitors....or all the fluorescent lights on the roommate's side slammed on and stayed on...can't blame them...we have the natural light from the window, they have nothing). And it's not as if people are being actively inconsiderate...they are just trying to get through this horrible situation themselves. I have all this angst towards them through the rough times, even knowing all of that, and get mad at myself for being so daft.

The lesson here is that, to be victorious over this monster, one must be flexible, understanding, and tolerant. If we get to the end of this torn up & angry, we will have missed the lesson. "Oh, how wise", you may say.....talk to me in the midst of struggling to hear the calming voice in the midst of all the chaos, and you will agree, that I am as raw and immature as anyone.

There are so many stories I wish to share, but do not have the time due to being the only one here with Jill until Matt is better (not including my wonderful support system....Michelle, Lisa, Jim, Dina, especially, who have convinced us that we need to rely on them sometimes....in a BIG way....and don't allow us to feel the least bit guilty for it).....I have so few breaks from this little sponge of a child. She wants to watch /learn /participate 24/7. At present, she is sitting in her bed, pretending to be stuck in the muck..."Hep! Tin Man! Hep! Dorsee! I stuck! Ge me out uh here! Oh, tanks. I so pwoud uh you!" when she should be asleep.....I do feel bad for leaving her to play on her own so much today....I've just been spent. I would've talked about me behind my back to another parent before all of this happened. Now I understand why parents sometimes (often) ignore their kids. So, anyone wanting to visit must know that I intend to make you my kid's playmate (without any facilitation from me) for at least half the time you're here. If you have the time, she has the energy....and she will make you use every last bit o' yours.
Please come play with her! Please!!!!!

REMISSION ACCOMPLISHED

2007-11-22T20:45:00.001-08:00

Yes, you read that right. Jill is in remission. They found NO Leukemia cells in her bone marrow last biopsy (one week ago). This was done prior to her beginning her 2nd round of chemo. Typically, children with AML have less than 5% Leukemia cells in their marrow AFTER the 2nd round. For her to have none after the 1st round is wonderful news! After Matt & I cried & high-fived & hugged over this, the doctor brought us back to reality with the cookie dough analogy.....when you take a scoop of chocolate chip cookie dough out of the bowl, it may have not ONE chip in it....that doesn't mean there are not chocolate chips in the dough, just not any in that one scoop. The sample of bone marrow they took showed no leukemia....but, we are not necessarily out of the woods (which is why they do 4 more rounds). That said...we're still elated.

She finishes chemo completely at 4 o'clock Friday morning & will have another 3 weeks or so of "recovery" before she can go home for her week (maybe two?). We hope to be home by Christmas, but would also be satisfied to start back on the road to getting this OVER WITH. She is wearing us out with her constant need to be entertained every second and her Go Go Gadgetness. That girl is quick & very unpredictable the past few days, especially.....today I stopped in her doorway to talk to another parent & she darted into the room (she's not attached when not having a drug administered....only if she stops hydrating do we hook her up to fluids). I didn't think much of it, she does it all the time & usually just dances around with her "Biddy Boddy Boo" wand or searches for a new toy to play with. When I pulled back the curtain which divides the 2 sides of the room, she was in her crib. Yep. She had climbed up into the big armchair that sits next to the bed and straddled the 8 inch gap between the chair & the bed, shimmied over her crib side (which was raised about 2 inches) and floopy-doop. There you go. I shrieked, "Whaaaat? How did you....where is the....who put you there?" And she very proudly stated, "I time into my bed my SEF." Oh, and apparently (according to a phone call 5 minutes ago from Matt, who is currently at the hospital with her), she can climb out too. "It starts out as a headstand....." HA!!!!!! (I'm laughing because it wasn't on MY watch).

Thanks to friends Lisa & Michelle who visited yesterday & brought gobs of fun stuff to do! The stamp kit, construction paper, crayons, STICKERS (Jilli decorated many doors yesterday at 11:30 pm & gifted each night nurse with two hands-full of their choice of stickers), foam decorations, shells & rocks (which I'm saving for a really crazy rainy day), and I'm sure I'm forgetting 50 other things...Michelle, you SPOIL us. Madison & Jilli became fast friends. It was so endearing. Thanks also to Michelle who printed out, copied (color-copied) & sent out 85 letters to my highschool graduating class ('93, 'yo) in the span of a few hours. Acted like she could've done it in her sleep, and immediately asked, "What next?"

Don't know if I thanked Laurie (Sammi's mom) for the incredible craft basket she put together for Jill & Anna, complete with tons of prepped crafts & either a model or photograph of completed project! And the accompanying basket of supplies with which to make each craft! How very thoughtful & creative. The girls have gone through 3 of them already.

To Jolly Jaeger, friend of my Uncle Tom's....she & her husband, Dwight, live in AZ. We've never met them....they've sent us 2 of the most darling care packages! Homemade playdoh, a lullaby CD, a ballerina dress (pics to be posted later).....WOW. Humanity.

To my Pedro Home Team who have rushed like madpeople to spearhead their GetSwabbed campaign & to set up the Garage/Bake Sale (150 people so far on the eVite list....Ally, you rock!). The website is nearly finished....I was so moved when I read it....if flows so nicely (Jim is a computer GOD). Shana G. cemented the location for the Jan 5th drive (Cabrillo Aquarium). Ourania is feverishly working on the pamphlets, and there is so much else being done behind the scenes, I can't even imagine! My friends are going to CURE LEUKEMIA! It's nice to have ambitious friends :)

To Dina, for always calling me when she's at one of 5 grocery stores "Do you need anything while I'm here?" and for being at my beck-and-call day and night. When I thank her, she makes me feel like it's a given.

To my sister Beth, who gave me her noise-cancelling sound machine which drowns out most of the beeping, crying, chattering, buzzing, and moaning all around us in the wee hours, so I can sleep better. One man's trash........

To the incredibly caring and forward-thinking NURSES at Miller's. Wow. Don't think any of them read this blog, but I want everyone in the world to know what wonderful care they bestow on their patients. The LOVE. The understanding. The compassion. The knowing what we're going through open-heartedness. Service with a smile. Free babysitting every time I need a little break (and thanks to CiCi....number one Nurses' Aide magnifico!!!!!.....for loving Jilli and for teaching her Spanish, one song at a time). And the Child Life Specialists, who make being there so much more FUN. Alison & Rose are incredible people. Jill looks forward to "Open Playroom" time every day. But is content to sign autographs in the Hallway Walk of Fame when it's not.

To Aunt Mary Wonderful for staying with Jill all morning Tuesday while I took Anna to school, went to the gym, and bought bras (whoo-hoo! that was exciting). And for buying & preparing Thanksgiving Dinner for our family, letting Anna help make the pies, and staying behind on Thanksgiving Day because of a stupid cold!!!, while we ate drank (& missed Mary) at the hospital. It was nice to be a family on the holiday, but our thoughts were with the person who made it so special. She's now tucking Anna into bed, after acting ultra-impressed with how well Anna can float in the tub, brushing teeth, reading books, and trying to muddle through her logic over why she doesn't have to go potty because she went 3 hours ago.....what a blessing she is!

So many I'm not mentioning, mainly because I need to go to bed myself. Tomorrow is my night at the hospital & if Friday is anything like Wednesday, I can expect to be exhausted the next day. As long as she is in high-spirits, there is nothing, really, to complain about!

Hope you all had a wonderful Thanksgiving. I am so thankful for all of you.

Thank Yous

2007-11-19T00:39:00.000-08:00

So much to be thankful for.....
(in no particular order):

Renee's mom Michelle for knitting hats for Jill.

Kristi & Jannah for taking care of Anna each & every time we need her to be taken care of.

The teacher at LAUNCH (I'm sorry, I've forgotten your name) who had her class make Jillian beautiful cards! They are bright & colorful, and brought such a smile to our faces.

The teacher in Florida (whose Mom works with Renee....but I'm not sure which of the 3 Renee's) who had her 1st graders make cards for Jill. Some of them made me cry! I've been meaning to write your class back....I promise I will soon.

Tammy, for organizing a "Tips for Jilli Day" at her hair salon (that brought in an ungodly amount of $$), for making pink & purple ribbons for everyone to wear (Anna says she will wear one every day until Jill is better), to her husband, Aaron, for making a beautiful poster which they put up in the salon....and for all the spectacular people (fellow hairstylists & clients of Tammy & others) who donated & bestowed such kind sentiments upon our family.

Heather for the adorable hand-made hat & shirts, and to Jannah for contributing the white shirts as Heather's "canvas".

Grandma Hunn, for the sweet notes that show up in my mailbox just when I need them the most, and for your "little somethings" in nearly each one. For being there to listen & make me feel so protected & loved every time I call. I LOVE YOU.

Dad, for feverishly organizing the Bone Marrow Drive for Dec 9th. For making the beautiful fliers, and for setting up the Fund. You have Missouri covered. I will not call to tell you she no longer has cancer, so you can stop hoping for that....but I will call to tell you what a difference you've made to her getting better (and to so many others...I know all of your efforts will result in at least one life saved! I KNOW IT!).

Laura, for organizing the Bone Marrow Drive in St. Louis. It was a great success! I was impressed at how quickly you jumped into action & at how, even faced with adversity in other ways, you pulled off this amazing thing for Jill. Thank you also to Nicki, Steph, & Jenny for putting in your time! I wish I could've been there with you.

To Kami, who visited with Jill & I this weekend for a good 3 hours. It was so wonderful to talk with you & glean from your vast experience. Thanks also for the Starbucks treat!

Colleen & her mom, for the Wizard of Oz quilts for the girls! They are so soft & comfy & adorable. We've gotten so many rave reviews on them....Jill is very attached to hers, already (& Anna just carefully informed me that the blanket in Jill's bed, is actually NOT the one Colleen gave to her...."That one is actually MINE, Mom. But Jill can borrow it.") I will send pics of them with their blankets as soon as I can get them to sit still.

Renee, for making us dinner nearly EVERY week since we got Jill's diagnosis. The presentation is impressive, the food is divine, the gifts & homemade cards....icing on the cake! You are such a fantastic person. Your mom must be soooooo proud.

Kate, for 2 wonderful dinners (it's not a competition, so don't go making any more....and don't feel bad for "following" Renee.....I dreamt of your Ziti) and for visiting with us when Jill was home. Your family is LOVELY.

Shana, for some great meals! LOVE your soup!!! And for all the hard work you've done so far helping to organize the Pedro Drive. You are a very special person....one that attracts goodness like a magnet. To know you is to be inspired, to feel so blessed. You will find a cure on your own, I'm nearly positive.

Jim, for putting soooooooooooo much time & energy into not only organizing the Pedro drives & setting up the meetings (once a week for months!!), but for spear-heading (along with all the other Pedro reps...Ally, Shaana, Shana, Ourania, & Rebecca) the Get Swabbed Campaign!! You are another vital person to have in one's corner. Jill LOVES you. We'd love to have a visit again soon :)

Dina, Dina, Dina.....there is no room in this entire blog for everything you've done. I need something--anything--I call you. You have a way of making me feel like it's perfectly natural to ask for help, and to cry & complain, and have no idea which road to take. You are an incredible person. One I'm so very lucky to call my friend!

My cousin Linda, for sending such sweet pictures drawn by her boys, Jack & Justin....and for not letting 10 or so years of no contact at all stop her from hugging me from Idaho!

Aunt Kathy, for jumping on any need she can possibly fill in an instant...for the sweet cards, ice cream money for Anna, family address list, and endless stream of pictures.

Aunt Debbie, for the sweet homemade cards & gifts for the girls. Please thank your friend, Helen, for us too!

Aunts Susie & Annie, for the great gifts (what did you send, again? Ha ha ha ha ha!) and consistent phone calls that cheer me right up!

Beth for getting those addresses for me (thanks to Heather for faxing them!) & Michelle for xeroxing, addressing & mailing out letters!! I will hunt you down & pay you for copies if it's the last thing I do!

Michelle F. for the Trader Joe's gift card! We will use it in no time!

My Speechie Gals for the fun night out at Hermosa Comedy Club. If I would've known you were buying my drinks, I would've gotten coffee.

Sallie, for helping me rent the park for Anna's bday party at a greatly reduced rate. Any chance you'd want to trade residences permanently? We can see the Lighthouse from our balcony!

Pat, for organizing the "Cans for Jill" at LAUNCH. Such an amazing gesture. My LAUNCH family continues to be my home away from home. Every little thing every one of you does, goes right onto the "Reasons Never to Leave California" List. There's no place like LAUNCH. There's no place like LAUNCH.

To Leah, Sandra, Debbie & Ian for becoming Donors this Friday. It was great of you to stop by & see us on the way out. We are so lucky to have you in our lives!

Ally, for organizing a Garage/Bake Sale for Jill. I am impressed at your gusto! Can't wait to be there with all of you!

I have not thanked everyone (of this I am certain). But nothing you do goes unoticed or unappreciated. I will get on official thank you's soon....I promise.

Pat & Oscar's Fundraiser

2007-11-18T23:55:00.000-08:00

Last Thursday night, I had one of the craziest out-of-body experiences ever. I walk into this restaurant....it's PACKED....there are 20 people waiting in line (all with coupons in hand)....I look around....I see someone I know....she smiles & waves energetically....someone at the next table notices.....he waves....it spreads....soon everybody in the place is shooting love in my direction....and it's all for Jill.

My good friend Lisa Rosenbaum organized this event....a full day of Pat & Oscar's in Torrance generously donating 20% of every guest check (with coupon) to the National Marrow Donor Registry, to offset the costs of our Torrance Bone Marrow Drive for Jillian. The manager (pretty lady on the right) told me with a smile and arms full of breadsticks that the joint had been jumpin' since 11:30 am (it was then 7pm) and that the turnout was one of the largest they've seen!!

I haven't had a chance to speak with even a fraction of those who attended, but have heard that almost the entire staff at LAUNCH took part (Lynn even got scolded for handing out coupons to people in line...ooops... thanks for trying Lynn!), Carden Dominion, Anna's preschool, was greatly represented (by staff and parents alike! Anna was over the moon getting to visit with a good chunk of her preschool class all having dinner at the same place!), friends from Pedro, parents of kids I was Speech Therapist to 5 and 6 years ago were there with their (now much bigger) kids & entire families....all to hopefully find a cure for my baby's cancer. It was overwhelming! I felt like I was at my wedding reception (minus the husband, who was holding court at baby's bedside...wish so much that he could have been there). I wish I could have talked to each person more, that I could have somehow really let each & every one know how incredibly HUGE their being there was to me & my family. I continue to be moved beyond belief at the LOVE that surrounds us! How Matt & I have attracted Southern California's most Big-Hearted Cross-Section of people, I will never understand. I just hope all who attended realize what a tremendous impact they made by doing something as simple as ordering a meal.

To the staff of Pat & Oscar's, we extend our deepest thanks for hosting this fundraiser. I received so many wonderful comments about the food, the cleanliness of the place, & the terrific service (even at your busiest, you were smiling & making sure everyone had what they needed). Many people who visited had not been there before, but I can guarantee, they will come back, and bring friends! It's things like this that make a business stand out. Thank you.

(And thanks to Sue Espinosa for buying our dinner, much against my will).

Lisa will let us know soon how well we did.....thank you everyone.

My Funny Valentine

2007-11-17T05:27:00.000-08:00

It is 5:15 am. The fluorescent lights, incessant beeping, constant opening & slamming of doors(okay, slamming, probably not, but it sure sounds loud when you're in the middle of a dream sequence), running (storm drain style) water, Christian music (looping looping looping..."I exalt thee"....oh, could we do that when the sun's up, please?), & miscellaneous noises from behind the curtain (I will spare you descriptions) are just some of the many reasons I am awake 3 hours before I was hoping this would happen. Why do I need sleep? I'll tell you.

BECAUSE JILL IS A MANIAC!!!!!!

From the moment she wakes up to the moment I let her know in no uncertain terms that it's time to sleep, she is movin'. This ain't no "la la la" skating through the day kind of movin', this is hardcore, get outta my way, I can't sing unless I dance in a tight circle, and I can't dance in a circle unless you move with me, Mom...no wait, sure I can! Being tangled in 5 wires is FUNNY! No, what's funny is watching Mommy try to untangle the wires while I take off down the hall (yep, I can run with cords wrapped around my middle) while she zoom pulls my IV pole behind her, shouting "Wait! Wait! Stop! I said STOP! Jill!!!!!!!" And what's even better is that every single person I speed past is rooting for me & grinning. I ROCK. Mom, EAT MY DUST.

Yes folks, this is my child on chemo.

For those of you who haven't gathered, Jill is doing great. She's in perfect health (except for the cancer), and is psychologically sound (some would say a tad off her rocker, but I think that's just a ploy for attention)....oh wait, unless you deny her something precious, such as, playing hide-n-seek, which Matt found out the other day when he turned her down (how can he hide & Jill find him when she is attached to an IV pole? I will tell you later. It is possible.). Ooooooooooh...the wrath of JillyMonster. She was so mad. Crying, stomping the feet, if she was bigger she woulda done somethin' about it, kinda mad. She is getting used to the fact that she has a friend around every bend, so Mommy has been allowed more frequent solo trips to the bathroom without the agonizing worry of "Is she okay with _____?" Her interests are evolving....I have withheld Wizard of Oz for the past 3 weeks, and though she is still fascinated with the characters, giving them rides on her push car (which I am officially renaming "Turbo Blaster"), making every doll or little character in a play sequence "Dorothy", "Taretow", "Tin Man", "Yion", "Dinda", or "Wickee Wisssss", and performing the "Lollipop Guild" with gusto, complete with imaginary handing of said lollipop to her audience (though, rarely on command, so don't be disappointed if she won't perform it for you). Her favorite movie (and sometimes, the only workable distraction) is now "Totoro", a Japanese anime-style movie about, as Jilli will tell you, "2 Sistuhs, a Daddy, and a Big Wabbit". She continues to love books, and is especially into Fairy Tales....she LOVES retelling the stories "Goldilocks & the 3 Bears" & "The 3 Little Pigs". She and Anna were really getting into to acting them out at home (hiding under the laundry basket, "Not by da haya uh mah sinny sinn sinn", then bolting under the easel when the house was blown down), and is really into "Give me 5"....the advanced version. I say "Give me 5" (she does), I raise my hand & say "Up high", she then moves my hand down & says, "Down Yo", then when I pull my hand away before she can hit it, she bursts "You too syo!! You too syo!!". She's actually the "too slow" one, but refuses to accept this.

Fun fun fun. But seriously, I am delighted that she is feeling good and seemingly unphased (so far) by the toxicity that is taking over her cells. If she were really hurting, this whole experience would be so much harder to handle.

I would like to encourage people to visit. Of course, calling first is always a good idea...we never know when she could turn for the worse. We are not lonely, by any means....always moving, always busy with something, but I would love for my friends & family (especially those who haven't stopped by already, although repeat guests are always welcome!!) to see what I'm sayin'. To experience her is a joy. I don't think that's just the mommy in me talking. So, if you are in the mood for laugh, and don't mind speed-walking up & down the hall with us, taking part in various "games", & especially if you have new songs, games, crafts, or other ideas up your sleeve, we would love to see you.

We are in Room 331 (at the end of the hall, just before you get to the Playroom), next to the window (AAAAAAA-LE-LU-IA!). Our phone # is 562-933-8332, although I am more likely to answer my cell (when it's charged!) 310-748-4378. If you cannot get ahold of me and will settle for my darling husband (who also welcomes visitors....and I've been trying to get him to post to this blog, but he is more of a private person, and though he doesn't mind ME sharing, is not necessarily all that into posting his deep thoughts on the World Wide Web)...his cell is 310-846-7254. If all else fails, you can try the Nurse's Station on the Ped HemOnc (Pediatric Hematology/Oncology) floor: 562-933-8500. We're always here, except when we're not (which is seldom). Again, Michelle's email is squashdiddlydoo@msn.com, if you'd rather your dialogue with me be personal (although anything you say can & will be shared in blog form...I'm kidding). Okay, next up.....the Thank You Diaries......so much to SAY!!!!!

Round Two

2007-11-14T01:21:00.000-08:00

Jill's ANC is 1600 today! Wow, she skyrocketed fast. When you're up, you're up. She is such a hearty girl....never got sick before this....hasn't gotten sick since. They will be admitting her tomorrow night at 8pm (thank you Kristi for taking Anna home with you!!) and she will have another bone marrow biopsy (they think they did the last one too soon, so they want to re-do to make sure they have a good idea of what percentage of her marrow is luekemic) & spinal tap to inject chemo (preventative measure). She will then begin Round 2 of Chemo, this time only 8 days, on Thursday afternoon.

I'm too tired to be creative with this post and tomorrow is a big day for Jill....last day of outside time for a while, so I need to get some sleep! Just wanted you all to know the plan! With Matt being back at work, this month will be difficult...one of us having to get Anna to school by 7am so Matt can be at work by 8, so he can be out by 5, so we can pick Anna up by 5:30. Fortunately, Kristi & Jannah have volunteered to be Anna's caretakers for that overlap time (and every Friday night OVERNIGHT....GOD BLESS the IKEMORI'S!!!!) when we need it & friends Dina & Jim have been, and will continue to "Anna-sit" as they are able & we need it. We don't know how we would do this without these heaven-sent friends.

I have so many people to thank (I've slacked so big time).....will get on that as soon as I am able.

These past 2 weeks have been SUCH an incredible blessing. Our baby is SOLID. She's READY. LET'S DO THIS.

Marrow For Jillian's Tomorrow

2007-11-09T18:55:00.000-08:00

Hi Southern CA Folks,

We will be hosting part one of "Marrow For Jillian's Tomorrow", a blood and bone marrow drive for Jillian. It will be:

Friday December 14th
3:00-9:00pm
Torrance High School Annex Cafeteria.

Participants will be asked to fill out a form and take a swab of cheek cells to be analyzed and added to the National Marrow Donor Program (NMDP) registry. If you are a bone marrow match for someone in need, NMDP will contact you and ask you to donate your bone marrow. Bone marrow is removed from your hip bone using a needle under general or regional anesthesia. You may be a little sore, but you could save a life as a result!

Because bone marrow follows ethnic lines, Jillian's donor must be Caucasian. The family already knows that Jillian's sister, Anna, is not a match. Matt & Michelle encourage EVERYONE to join the registry and save a life in Jillian's honor. They are getting to know a lot of people at the hospital who will have less of a chance simply because only 20% of people in the bone marrow registry are of other ethnic backgrounds.

There is a $25 processing fee for Caucasian donors. People of all other ethnic backgrounds are FREE because there is a federal grant available to pay your fee. At our drive, the Red Cross will pay the fee of the first 60 Caucasian donors willing to also donate blood. To make an appointment to donate blood go to http://www.givelife.org/ and enter the sponsor code = JILLIAN.

We will also be hosting a fundraiser at Pat & Oscar's at Del Amo Mall in Torrance on Thursday November 15th. They will donate 20% of the proceeds from people who bring in our official coupon. This money will go to offset the cost of the $25 processing fees, so hopefully it will be much less for people to participate. We will update you after the fundraiser! To get a coupon, please go to http://www.cdecena.com/jillian/index.htm and click on the link in the lower right hand corner of the page. Feel free to contact me with any questions at carothersann@hotmail.com.

For more information about joining the NMDP registry go to http://www.marrow.org/.

If you are interested in coming to our drive and have not signed up on a list at a Torrance school, please contact me so we will know how many people to expect. We want to make sure that the NMDP has enough staff, kits, and volunteers to help things go smoothly. If you plan to come, please check http://www.marrow.org/ to see if you meet their requirements, bring your driver's license, and contact info (name, phone, number, address, e-mail) of two family/members or friends who could help NMDP contact you should you move or cannot be reached.

If you can not come to this drive, Part 2 will be in San Pedro on January 5th! There will be more information on this drive later.

PLEASE COME!!!! Let's make sure Jillian has a match if she needs it!!!

Thanks,
Ann Gerlach

One More Week!

2007-11-07T22:48:00.000-08:00

Jill had a clinic appointment today. Her doc gave us the results of the bone marrow biopsy from Monday & it is great news! She has less than 5% leukemia cells in her marrow (ideal...not all that uncommon, but definitely ideal). Her ANC (Absolute Neutrophil Count....basically, the part of the White Blood Cell that "matters" when deciding when the body is ready to be hit again with chemo) is only in the 500's (the level at which she is allowed to leave the hospital after recovering from chemo). As many have asked me to explain this better, I will try:

Chemo knocks her down to nearly zero.

She spends the next 3-4 wks trying to get up to 500. It usually takes a LONG time to get to a 3 digit #, then it rises fast. Case in point, two weeks after chemo ended, Jill was at 12, the next day at zero, the next at 19, the next at zero, the next at 13, the next at 216, the next at 480, the next, high enough to go home! The reason she keeps going back down to zero, or close to it, is because her body is likely trying to fight off a virus & uses up the few WBCs it has each time this happens.

She goes home when her ANC is at least 500...a number high enough that she will likely be able to fight infection without succumbing to it (depending on its intensity), but too low to start another round of chemo. They want to see her WBCs recover more & give her an opportunity to increase her weight & strength before knocking her down again. During home stays, she has to go to the clinic every 2-4 days to check her ANC.

She gets readmitted when her ANC is around 1000. They usually admit her in the evening & a spinal tap is scheduled for the next day (to draw fluid out to test, and to inject chemo...although she will likely only have this done once per cycle now...the 6 she had last cycle were due to the fact that they found leukemia cells in her spinal fluid...once they are obliterated completely, they rarely come back...it is not as certain in the bone marrow).

Each chemo cycle usually gets progressively harder; the body takes longer to "bounce back", thus making her hospital stays longer, but also, perhaps, her stays at home in between cycles.

Now, don't worry...I won't do this to you every month! But here's the lowdown for this cycle:
Jill was released on Wed 10/31, with an ANC in the 600s....on Friday, it was down to 100...on Monday, it was in the 300s....today, it was 540. She has another clinic appointment on Tuesday (the doctor does not anticipate her ANC will be 1000 by Friday) & will likely be readmitted on Wednesday 11/14 in the evening, to begin chemo next Thursday, taking us through Thanksgiving. If we're lucky, we'll be home for Christmas (but I'm not going to hold my breath).
My Aunt Mary will be 11/19-11/30 (yay!) and Cousin Kevin will be here 12/5-12/13 (yippee!). When we have someone staying with us (especially if they can drive...we can lend one of our cars), this is so much more do-able. We haven't yet had to do this with Matt being back at work & no one staying here....I'm sure that will pose challenges, but am confident that friends will help out in any way possible, if we simply ask. Thank you though, for anticipating need! Having to ask will never be "easy" for us. We are blessed with so many family & friends who just KNOW what to do to make this experience more bearable.

This past week has been so "normal". Jill is so full of life, and so energetic & rowdy...it just blows my mind that she has cancer! It's still not real. Not until we are faced with some of the terrible horrible things I have been reading about on other people's websites (why do I do this?), will this become real to me. Right now, the hospital is just another playground. When we arrived there on Monday for the bone marrow biopsy, my heart sank....but Jill started kicking her feet while still in her carseat, and excitedly cheering, "Hopitoh! Hopitoh! Hi Werters (workers)!!!!" to the construction crew that lives outside her bedroom window there. She is such joy. If I have to be cooped up in a place surrounded by sadness & disease, I'm glad she's my bunk buddy.

If any of you are around from Thurs-Mon and would like to see her, we will likely be venturing out to a park or two (preferrably one without sand, not known for being "yucky" & not crowded) or a walk & would love it if you could join us! We hesitate to have little kids in the house with her, especially if they go to school or are around older siblings who do, as this is just a bad time of year for surprise illnesses. But outside is ideal...they cough into the wind...she's not likely to pass through it :) Adults in the house are fine, so if only for a few minutes (if you're "in the area"), come on over! (Call first, just in case we are all still in pj's....wait a minute...I DONT CARE!!)

Good Luck to Matt on his first day back in 5 weeks!! I know it will be very hard being away from your baby, honey. She'll be okay. I promise. And I'll try to play more & clean less. Really I will. Priorities....priorities.....shakin' off that OCD.......!!! I love you.

And to all, a good night!
Michelle

For those who are interested (and are not on my "photo mailing list"), I can email you a link to gobs of photos & add you to that list. Just email me at squashdiddlydoo@msn.com.

Still Home!

2007-11-05T17:39:00.001-08:00

Jill had a bone marrow biopsy today. No results yet, but they do not expect her to be in FULL remission until the end of the 2nd round of chemo. Her WBC count is around 400 (it needs to be 500 for her to leave the hospital, and at least 1000 to be readmitted so that the next cycle of chemo can start), so it's gone down (it was in the 100's on Friday!) & come back up....concerning, because she is at increased risk for infection, but heartening because it shows the luekemia is not coming back in full force!

So, we have another clinic appointment on Wednesday. The earliest she will be readmitted is Thursday or Friday of this week. Matt may start back to work this week. Nerve-racking for both of us, but necessary...we need to save the handful of weeks he has left on Family Leave for those REALLY HARD times...this certainly isn't one of them, but it sure has been nice to be all together as a family of 4, nearly every minute of every day these past 5 days!

Thanks for all of your prayers & phone calls & cards & packages & good wishes! Keep them coming!

Toys and Dishes

2007-11-01T14:59:00.000-07:00

Thank you EVERYONE who has given to Jill & Anna so generously during this past month! The girls have been loving their presents! We would like to request, though, that people not send the following items (simply because we have so many & we don't want your gifts to go to waste):

*Coloring Books/Crayons
*Playdoh
*Stickers
*Stuffed Animals
*Electronic Toys
*Candy (PLEASE no more CANDY!

What she seems to be doing most these days is riding her car (with Wizard of Oz characters riding on back) & playing with little people/props in her dollhouse. She also loves putting on different shoes (although those dress-up shoes with the high heels are dangerous!), painting, playing with playdoh, cutting/gluing, and other crafts (which are set up every day in the arts/crafts room at the hospital). Oh, and playing hide 'n seek (another free activity).

Items that we could use (but are not desperately in need of....just if you really want to get her "something"):

*Knit caps or other cute hats (preferrably pink/purple/blue or other soft colors)...her head is 19" (thanks Heather!! The hat you made is super cute on her!)
*Slippers or other easy on/off shoe (she's a 7)
*I came across some Wizard of Oz Colorforms online before she was diagnosed that I almost bought...I'm sure she would love them
*Colorforms! She has a few sets, but never tires of sticking them on different places in their companion books or on mirrors/windows (this is a great airplane activity, for your own kids, by the way).

Please include gift receipts if you are able to, as if she already has what you send, we can easily exchange it for something else. Again, we are not hurting for toys! These are simply suggestions for those of you who choose to give "fun" stuff. And we thank you.

Now regarding dinners made for us....wow! Have we been eating like KINGS!! We have not had to make a meal, I don't think, since October 2nd!! Amazing. (Now if someone would just pack Anna's lunch for school every day....I'm KIDDING Kristi/Jannah! Don't even think about it!). We love your scrumptious dishes, sweet cards, & impressive presentation! However, we would like to return your dishes (even the re-usable plastic)! If you have delivered a dinner in the past few weeks, would you mind emailing me a description of your containers? Shana, Dina, Renee, I think I know what is yours, but I have lost track of who sent want dish after that....in the future, write your name with a Sharpie on your containers & we will get them back to you.
I would also like to return some toys/books/puzzles that Jill is "finished" with....if you are coming to visit & know you gave me something, send me an email as a "heads up" that I should have your stuff ready. I will find some way to get stuff back to you if I won't be seeing you soon, but can't promise when.

Thanks everyone!

Anna is NOT a match

2007-11-01T14:56:00.000-07:00

We found out yesterday. I'm not as disappointed as I thought I would be. Maybe because now we won't have to put Anna through any discomfort, or because if Jill doesn't relapse, she won't even need a transplant! I'm happy that the drives are getting off the ground in MO & CA, anyway...if for no other reason, but that more people will be added to the registry! Thanks to everyone who is working hard to make that happen!

She's Home!!!!!

2007-11-01T10:41:00.000-07:00

After the FABULOUS Halloween Parade at the hospital yesterday, we received notice that Jill was cleared to go. Mark & Beth scrambled around cleaning up our condo (THANKS you guys), then Mark drove up to the hospital to help us move out (filling our empty gas tank on the way...sorry about that), Beth took Anna & daughter Maddie trick-or-treating---navigating her way through the suspicious streets of San Pedro, and Jill got in her carseat for the first time in almost one month....she had big wide eyes the whole way home...."Tars! Yites! PeePoh (Cars, lights people)!"

When she got home, she marveled at her old surroundings...."My toys! My bed! My books!" And then, the obvious disappointment, "Where Anna?"

When Anna got home from trick-or-treating, the two picked up where they left off...rolling around on the floor, hugging, being hugged, and pushing hugs away, arguing about nonsense, sitting 'n spinning, coloring, dressing up (Anna had trouble putting on her slippers, and Jill said, "It's otay Anna, I hep you!") and just enjoying the comfortable company of each other.............

We have an appointment at the hospital tomorrow for blood checks, and a bone marrow draw on Monday....she could be admitted anytime after Monday (but definitely by Wednesday)...sooner if she comes down with a fever.

We are so happy to be a family at home again.

St. Louis Bone Marrow Drive

2007-11-01T10:39:00.000-07:00

We have organized a bone marrow donor drive in St. Louis. It will be Nov. 11th at John Burroughs School, 755 S. Price Rd., 63124, from 1pm - 5pm. Anyone who would like to join the bone marrow donor registry can simply pop by during that time, fill out a medical form, and take a simple cheek swab, which will be tissue typed. There is a $25 fee (actually, it's much higher, but St. Louis has a "community matching funds" program that brings down the cost for individuals.) And that's it. If you are determined to be a tissue match for a waiting patient, and are asked to actually donate bone marrow, this procedure is more involved. The procedure is done under anesthesia, so is not painful, but donors are usually sore for a few days afterward. You can use this link to learn more about the commitment you are making when you join the donor registry:

http://www.marrow.org/HELP/Join_the_Donor_Registry/Understanding_Your_Commitment/index.html

Please come out and join the registry in support of Jillian and all the patients waiting for a match. Feel free to spread the word to whomever you'd like, and contact Laura (lauramarie717@yahoo.com) for more information.

No Blood Relatives

2007-10-31T00:10:00.000-07:00

Hello Familia,
If you are blood-related, please do not donate blood or platelets at the Blood Donor Center at the hospital, and especially do not donate either directly to her. If she continuously receives blood products that are genetically linked to someone that may be a bone marrow match, her body may develop antibodies to those products, thus rejecting the marrow. Sorry I didn't mention this before....so many things are becoming clear to me just in the past few days. Another of those things being that .....

You CAN donate blood directly to Jill, and platelets (this is especially needed and preferred). Did I already blog that? We spent a full day at Disneyland/CA Adventure today (me, Anna, my sister, her boyfriend, and my niece) & my brain is fried....my legs still feel like they are pounding pavement...MUST SLEEP....we have trick-or-treating at the hospital bright & early tomorrow morning.....I'll send pictures! Can't wait.

Oh, and Jill will maybe be going home by Friday (for a measly 3-6 days, but still really cool), so if you planned on visiting this weekend, please make sure & call first!

Michelle

Will & Grace

2007-10-29T15:18:00.000-07:00

So, Jill is doing amazing! She is only hooked up to tubes (for antibiotics) a few times a day (for an hour or less). She gets infusions of platelets & blood every few days (2 hours), but other than that, is "free". And that's all that baby really needs to be over the moon, happy. For those of you who have not witnessed the Bean FFFFFFLYYYYYYing down the hallway on her push car, & screeching to a dead-on accurate stop right before someone's toes, it is quite the sight. Daily, she wakes up (after sleeping through the night, just like she always has), with a beaming grin, "I wate up!", delves into her breakfast (a couple of weeks ago, she had bacon for the first time since we arrived here...she has bacon every Friday at Rose, her daycare lady's, house...and she exclaimed, "Mommy! Rose make befest foh ME!!!"), and after a quick wipe-down, leaves this room, for a 2 hour stint of running, riding, playing hide-n-seek (you'd be surprised how many hiding places there are in a hallway), ringing around the rosie, galloping, dancing, shaking her head back & forth until she's dizzy, flirting with every human being who even sort-of notices her, going in circles & circles on her "Pee Pin" (Sit'n'Spin), and experiencing the love from the Child Life Gals in the Playroom, doing crafts, "Pay Pee-doh" (play playdough), playing the piano, and otherwise, just enjoying her happy-go-lucky life in a place that is not quite "home", but not that far removed. SHE IS A JOY. She is an INSPIRATION! She makes me so entirely happy. Beyond words, happy. Smiling wildly for hours, happy. Nothing can stop me, happy.

And this little description of my girl, above, is why I am not down about her cancer. She has taken this packet of bad news, dumped it out, mixed it up with flowers, smiles, kisses, and glitter & thrown it up in the air, so now, when it falls down around us, yes, it's annoying....it gets in our hair, it makes a big mess...but it's also pretty and unique, and Jill's own.

I was talking with my friend, Shana last night about how every day brings an epiphany for me....the "aha" moments Oprah speaks of....I get it. The pain of this is nothing compared to the BEAUTY of this. Maybe it has much to do with the person I saw myself as before cancer came to us. Among other "pleasant" things (otherwise, I guess I wouldn't have so many great friends), I was cynical, somewhat judgemental, I belabored silly points...I wasted so much energy on being frustrated or tired or irritated. Irritable. That about summed me up. I remember telling a number of close friends the first few weeks of this that the mantra that kept me up at night was, "What doesn't make you stronger, kills you." I also told Shana, that if I got a disease like this, the person giving the eulogy at my funeral would not say, "She was a fighter," but that "She gave up the minute she found out". Well, this, after the initial shock and despair passed, has turned me into someone BETTER. I have no interest in being pissed off or agitated that we have loud roomates, or that my nurse that day didn't fully understand my questions, or that the mom I met in the playroom who was distraught over her kid's diagnosis, had nothing to complain about compared to the diagnosis we received. For some reason, Jill has enabled me to see the Big Picture. To realize that every moment counts, and that EVERYONE is fighting something. That noone or thing is inherently bad......people get through their everyday the best they know how, and things happen, good and bad to keep the flow going. It's not that NOTHING matters, rather that EVERYTHING does.

I happened upon a website yesterday entitled, "Caylee's Hope". It was dedicated to a 4 year-old girl who's parents found out she had AML (Jill's cancer) 3 HOURS before she died.....a very high fever brought her to the hospital. 3 Hours. If for no other reason, we are blessed to have at the very least, 6 months to spend the highest quality time with our beautiful little girl and get to know her better. How much actual hard-core REAL time did I spend with my girls before this? I mean, yeah, I was lucky to have 2 days a week off of work with them....but how much of that time was daily chores/errands/email/phone calls/go play with your sister, I need a break time? Not at all to suggest that those things aren't important as well, but THIS being here EVERY DAY ALL DAY has forced us to experience who Jillian is. And I am just thrilled to have that chance.

So much good has come our family's way since the last time I entered a blog....I will write more about that later, but for now, I want to leave you with a quote my friend, Renee, shared with me recently.....

"The will of God will not take you to where the grace of God will not protect you."

I have never felt so protected in my entire life.

St. Louisans...Unite!

2007-10-25T01:00:00.000-07:00

From Laura Crowley (thanks, Laura):

Just so everyone knows, we are in the process of organizing a drive in St. Louis, and St Louis has a "community matching funds" program that brings down the fee for donors to $25 (from $52). Also, the information I've read says that should you be a match for someone, the bone marrow donation process is done under anesthesia, so it's not that painful in and of itself, although most people are sore for a few days. I'll be sure to get information to everyone once we have a time and a place.

We want your comments !!!

2007-10-25T00:52:00.001-07:00

I've heard from many people that they want to comment on a posting, but have not been able to as they do not have a gmail account. Never fear, I have changed the settings, and now (I think) this will not be a problem. And we really would like to hear what you have to say...those that have figured out how to comment already, we salute your intelligence & appreciate hearing your opinions. This is not to say that the rest of you are morons. I probably wouldn't've been able to figure it out either.

I've emailed a handful of people who have made themselves greatly available & are involved in such things as setting up the bone marrow drives, inviting them to put new posts on the blog. If you have not been invited & would like to post (at any time), I will gladly add you to the list!

The Next Step

2007-10-23T21:35:00.000-07:00

Matt & I met with the doctor & nurse educator today & here's the lowdown:

Although Jill has a chromosomal abnormality (11q23), she may not be in the "high risk" category if, at the end of this cycle of chemo (in about 2-3 weeks), they find less than 15% blasts (leukemia cells) in her marrow. The doctor seems to think she will land in "intermediate risk" category as she responded really well to chemo right away.

Anna had blood drawn yesterday (needle in her arm for about 2 minutes while he filled up 3 vials of blood...she sang, you guessed it, "Ding Dong, the Witch is Dead" until it was over, smiling the whole time....what a TROOPER!! Our nurse was hella-impressed!). They also drew our blood, NOT because we are likely to match, but rather to get an idea of the genetics behind her bone marrow type, which will help them track down a donor (if Anna is not a match) through the National Donor Marrow Registry (http://www.marrow.org/). There is a 25% chance Anna will be a match, and IF SHE IS, we will go to transplant as soon as our doctors & the transplant team at either UCLA or CHLA (we've not decided on a hospital yet) are ready to move forward....she MAY finish up all 5 cycles of chemo, but will likely go to transplant after the 2nd or 3rd, once they are certain she is in remission. More on that later...too much info to go into a "maybe".

IF Anna is not a match, Jill will finish up the 5 cycles of chemo (taking us to at least April), going home for 3-6 days each month in between cycles (10 days of chemo, 2-3 weeks of "recovery" during which her White Blood Cells rise back up), and we will wait to see if she relapses.

IF she relapses, we go to transplant from a Matched Unrelated Donor (MUD). We have a "pretty good" chance of finding at least one unrelated match as 80% of the people in the registry, at this time, are Caucasian, and (didya know???) bone marrow follows ethnic lines!!

Bottom Line: Let the bone marrow drives BEGIN! Even if Anna is a match (most ideal), Jill's body COULD reject it & we would need to go to a MUD match. They will be looking at the Bone Marrow and Cord Blood Registry (so bank your new baby's cord blood for yourself, and pay a yearly fee....good insurance for you & your family....or donate it!! Don't let it go to waste!!).

If you are now questioning whether or not to participate in the drive because you are not Caucasian & there is no chance you would be a match for Jill, please read carefully....this is probably the most important bit of information I have or ever will share in my life (and unlike most of the nonsense I spew, this is NOT an opinion):

Leukemia is not a White Man's Disease.

Leukemia kills.

Oodles of people (much like us) have NO chance of survival if they do not get a donor.

We have met these people. They are real.
They need you (Hispanics, Asians, African Americans, those of "mixed" descent).
They have babies, toddlers, children, teenagers, hanging onto life.
HOPING. PRAYING for a match.

We would be elated if one of you, our friends, our family, people we don't even know from our community, are a match for our baby. But please do this, not just for Jillian, but for the person in Texas whose LIFE.....YOU.....may SAVE.

Here's what it entails.....a cheek swab & processing fee ($50, but we are working on getting it reduced or waived). IF you are found to be a match for someone, you will need to take a few days off of work & endure (depending on your pain tolerance) a "painful" procedure of having a needle inserted into your hip bones, repeatedly, to draw out as much marrow as is needed by the recipient (in Jill's case, not much). You will be sore afterwards for up to a week, maybe more. All of your medical costs will be covered, but not your time off work...unfortunately, the donor recipient is given no information on who you are....if there is a way for you to contact them, I'm sure they would gladly cash out their 401K & deposit it into your bank account.

I'm not about guilting anyone into this. If you don't do it, we won't know! I just want everyone to consider what these little kids go through having cancer and weigh THAT against the inconvenience & discomfort of passing a little bit of your life on.......

I love each & every one of you....I'm loving more and more every day, and seeing so much good around every corner, and being faced with challenges (as simple as sleeping through blaring soap operas on the Telemundo channel) that I never imagined I could conquer!! It's not fun, but it's rewarding. I am so much stronger already. You, as a community of friends & family, have greatly contributed to that strength.

More to follow.......................................................................................................................

More Pics

2007-10-22T15:38:00.001-07:00

Recent Pics

2007-10-22T15:32:00.001-07:00

More Thanks Due

2007-10-22T03:16:00.000-07:00

Jannah~For bringing us dinner on our anniversary....from our favorite Thai restaurant. We gazed lovingly into each other's eyes across the sticky tray table by the flourescent light, fondly listening to machines beeping while the sick baby slept :) So romantic!

Stephanie~For the adorable Wizard of Oz dolls. Jill plays with them every day....she alternates which one will administer her oral meds or swab her mouth (she hates the mouthwash stuff they make her use)...it's so much easier to take when the Tin Man is holding the swab :)

Eldris~I miss you!!! Thanks for the Dorothy Snow Globe Music Box!!! Jilli can't wait for me to turn it all the way, she starts yelling, "Snow Globe" in a most hilarious way (sounds a little like, "Sdleh Dloh"..spit flying) & singing along to "Somewhere Over the Rainbow"....it's always "way up high".

Olga & Ralph~For the Dorothy figurine...Jill has to have both the snow globe & figurine at the same time...they talk to each other. Your cards were so sweet. We really appreciate that you thought of us :)

Rosemarie, Belen, & Sheila~For dropping books off on our porch! How thoughtful! We have yet to go through the bag, but are in the process of switching things out. Thanks for labeling them! We'll let you know when she's "done" with them.

Jessie~For your awesome "Jellybeans for JillyBean" campaign & delightful care package! Love the picture collages. Anna loves her TinkerBell lunchbox!! I'll get to the Thank You notes later (maybe), but for now, I'm copping out with impersonal, yet public email thanks. It's the wave of the future (and I'm a little short on time). Oh yeah, and it's only because of your bag of candy that I'm still up at 3:30 am. I was so ready for bed when the Butterfingers screamed my name & I just had to oblige. Now I'm high on chocolate. Thanks a whole lot.

Kevin T. Ridgeway~For your BEEEEUUUUUUTIFUL letter....so eloquent & inspiring. You made me cry. Then I saw you on the ladder picking apples, in the middle of the pumpkin patch, and chumming it up with a drag queen and I couldn't stop laughing. I loved your postcard, too. I need some funny around here. You come on down whenever the spirit leads you. Nuestro casa es su casa. Our food is yours to prepare, our toilets, yours to scrub. I mean it....you got time? Get on da plane.

Jack & Jessica~For staying through the puke (Jack, thanks for cleaning up) & helping me give the Little a bath :) For composing pics with Dorothy (the life-size cardboard cutout, compliments of Miss Jessica) & chatting so late so I didn't have to be alone. Have a good trip, Jack...I have your cooler. Call me when you get back.

Kristi & Ian~For taking Anna for her very first sleepover on Friday and for making it so fun, she didn't even call her momma!! I now have a big reason to love Fridays!! No really, you guys have helped us in so many ways thusfar....we don't know how to thank you :) Except to allow you to take our daughter whenever you need your daughter occupied & out of your hair. Like I said, You're Welcome :)

Ally & Sallie~For visiting on Saturday, bringing yummy food & presents & for your sweet, genuine company. You made me feel better on a not-so-great day. Thank you for being there for us. I will light the lavender candle soon...so excited!!

Danielle~For all the emails & words of support, the Guardian Angel charm & echinacea & adorable pics of your grandson.

Felicia~For the nice card & cardstock! How great of you!!

Carolyn~For your generous gift....I was very moved.

For the anonymous emailer who has offered to pay our cell phone bill (who are you???) It is truly an amazing thing to give and not wish to be recognized. Drives me crazy not to know. If you change your mind & want to tell me who you are, I'll still let you pay the bill. Seriously, though, if there is a way for you to maintain your secret identity & communicate w/me via email, I have some important info to share.....please email me at squashdiddlydoo@msn.com.

Uncle Tom~For the adorable Colorado Moose/Bear books. Anna really digs them!! Jill's a little young, but I really appreciate it!!!!

Uncle Chuck~For your sweet card.

Aunt Ginny & Uncle Denny~For the packages....we devoured the first one, and were a little bummed we couldn't eat the second one :) I think Jill will enjoy the video and am sure Anna will love the Maisy book. And for the monetary gift....thank you so much.

Leah & Sandra~Leah, for giving blood & delivering cardstock & for your loving, kind demeanor that always makes me feel I can talk to you. You know what we are going through and we appreciate your candidness & allowing us (me) to be candid as well. Sandra, I love your comments on the blog. You are so sweet!! I'm so glad Matt is working amongst so many beautiful people.

Michelle & Lisa~For the toys, the dinner, the laptop to borrow!!!! The blood-letting, the visits, the offers of more & more & more help. You guys are truly amazing. Something about Denison just brings out the best in people!!!

Rose & Maria~For the visit!! Jill loved seeing you, Rose....thank you for bringing our attention to the bruising. If you hadn't mentioned it, we probably would not have caught this cancer as soon as we did. We love you.

Susan & Ann~For visiting, bringing cardstock & books & pictures, toys for Jill, and for cheering me up with your adorable babies!!!!

Shana & Dina~For visiting today and for getting our minds off the bad news (next blog..I'm too tired to talk about it right now).....Shana, I love you for just showing up & doing what needs to be done like it's no big deal....for playing with Jill so I can talk on the phone & getting excited about taking action to change this bad news to good. Dina....my coffee saviour! Thanks for all the yummy goodies (still waiting for the BILL!!) & helping me organize. I feel so much better. Thanks to Jim for watching Anna today, too!!

Shaana~For your awesome chicken dish---it was GREAT!!! Anna hasn't seen her purse yet, but she's gonna love it! Thanks for the Cheer Bear/CD...so cute. And for assisting in the organization/carting 'o stuff down to the car. And for the research....I'll look into it soon.

Colleen~For making Anna laugh & for humoring her just about every day when we get home from school. For befriending my Mom....she freaking LOVES you....I'm like, "Okay, MOM! Enough about Colleen already!! Geez, she's not THAT great!" and for the hilarious picture of Anna as Dorothy. And for giving Dorothy an impromptu tour of your house, allowing her to open every single door without asking first and acting like it was no big deal. She digs you in a BIG way. AND for the surprise kitchen!! Jill is going to pee in her pants...which is no big deal, really...she does it at least 8 times every day.

Steve~For the enlightening chat. We are on the same wavelength....shutup Karen.

Mom~For staying with us for 2 whole weeks, playing countless hours with Anna, driving her to/from school, cleaning our house, cooking, hanging out with me at the hospital, and just being there to talk....it was great sharing a Corona with you on your last night. You are such a great person, and I'm glad we're friends.

And to everyone I didn't mention, who called or visited (I don't think I left out any visitors) or made food or brought us a needed item....I am too tired to think anymore tonight, but know that I appreciate every single act of kindness bestowed upon us. We are eternally grateful.

Jill is a ball of energy & doing awesome. She's flying up & down the hallways on her little car...I think they took the NG Tube out tonight. And I guess I'll share...but I don't have much detail....they found out today that she has a chromosomal abnormality (11q23), so she will absolutely need a bone marrow or stem cell transplant. Let the driving (bone marrow driving, that is) BEGIN. My Pedro friends have come up with some pretty great ideas on how to get some media attention or at least raise some funds ....my Torrance friend (Ann) is already fast at work on getting a drive going through TUSD, and my MO family, I hear, is getting it going, too. We need lots of prayer, love, & support (as per usual)....if Anna is a match, that is the best chance Jill's got. They will be testing her this week, I think. Whew. This is way more than I thought I could ever handle. Ask me tomorrow (today) how I'm doing.....I need to get to BED!! It's almost sun up! Thanks for listening....

Semi-Permanent New Phone #

2007-10-21T03:57:00.000-07:00

Okay, so we're in the same "new" room (321) but are now by the window (yay! even the construction view makes me happy to not be right by the door with NO privacy). So the # is 562-933-8341. At least, that's what they tell me....if that doesn't work, call the cell. We don't have a roomate tonight (this will NOT last), so I'm fortunate that it's my night to sleep here. I slept from 10:30-3am...Jill woke up for the 2nd time just screaming uncontrollably...wouldn't let me touch her...kept calling for "Daddy".....sigh.....poor baby. She needs something to TWIRL!!! She keeps opening & closing her fist right above her head, searching for her CURLS. I know that's what is bothering her! She would always console herself that way on waking up too soon.....does anyone have any ideas for comfy knit caps with tassels or something attached to the top (something soft) for her to twirl? I need all of my artsy-craftsy sewing friends/family to brainstorm :) We need some toppings for this bald little head!! Where is Debbie????? Ally...can we track her down? Off to try & sleep a little more.....visitors are VERY welcome over the next few weeks (baring other "issues"...call first) as she is feeling, overall, very well. Okay, g'night.

Sneaking in a "FW"

2007-10-21T03:25:00.000-07:00

My friends Sallie sent this to me after her visit today....couldn't be more poignant (for all of us):

A professor stood before his philosophy class and had some items in front of him. When the class began , he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was. The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was. The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with an unanimous "yes." The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed. "Now," said the professor as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things--your family, your children, yo ur health, your friends and your favorite passions--and if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter like your job, your house and your car. The sand is everything else--the small stuff. "If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you. "Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first--the things that really matter. Set your priorities. The rest is just sand." One of the students raised her hand and inquired what the coffee represented. The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend."

New Room

2007-10-19T16:11:00.000-07:00

Hi everyone,
Our new room # for now is 562-933-8321. BUT....there's a good chance will be moving again within the next few days....they are trying to get us into a "B" bed (furthest from the door) as those of us who have to stay long-term shouldn't have to put up with all that foot traffic!!

I asked the doctor today why we absolutely HAD to stay at the hospital over the next few weeks...she's doing so well, and doesn't need any meds (except Zofran for nausea, as needed, and nourishment via NG Tube--now just at night while she's sleeping, she's eating pretty good on her own during the day, and IV fluids, both of which we could administer if trained)....she said that these kids (with AML) tend to spike fevers quickly (and she likely will within the next 3 weeks...not necessarily from a virus she catches from someone else, but from something within her own body) & it is very important to start them on antibiotics within the hour. Do antibiotics stop viruses? It's complicated.....in a way....but too hard for me to understand well enough to explain just yet. I'm sure I'll be able to write a medical journal when this is all over.

Okay, so visitors are welcomed, just call first. Oh, and be prepared....she's bald! I'll send pics soon. My little Buddhist Monk....I asked her to go up the mountain & bring me back some Zen....she said, "Here you doh, Mommy....tum den (some Zen)!" She's wiser than we realize :)

Room Change

2007-10-18T19:59:00.000-07:00

Hi Everyone,
Michelle asked me to let you know that Jillian was moved to a shared room today. Unfortunately someone came in who had a fever so she needed a private room. We will give you the new room information shortly. For now, please call either Matt or Michelle's cell phones until we can get you the new phone number for Jillian's room. Also, since Jillian is in a shared room, space is going to be tighter...so please call before you go to the hospital...visitors are still welcomed & appreciated but will have to be scheduled a little more (at least for now). Matt & Michelle wanted to say thanks again for everyone's love and support. If you have any questions, you can email me at klikki@ca.rr.com. Thanks! Kristi

Why Us?

2007-10-18T08:33:00.000-07:00

I've been asked by some if I am mad at God. If I wonder why this happened to us....what did we do to deserve this? The answer to the first, is definitely, "no". I grew up with a strong belief in God....my family & youth group helped strengthen & maintain that....sometimes I look back & wonder, was I really close to God or just close to my friends, who were close to God? Was it an identity issue? Was that relationship ever real? Over the years, I have explored other faiths (I was raised Catholic) & dogmas.....all make sense! None seem wrong or backwards or ridiculous to me. Therein lies the problem.....so many of my friends are of different faiths (or none at all), and I can't imagine that any of them are misguided. After studying (on a very basic level) a myriad of belief systems in college, I realized that there is no one path for us to follow to get to God (for those who do not believe that, I do not wish to offend....this is merely my belief). God is within us. Every day....in the air, the trees, the water, the laughter, the traffic....God is a part of this situation we are in....God who created ALL and made it so that NOT everyone is perfect. There are necessary flaws in the system. Science is God's Creation, as well. Jill's cancer is a freak gene.....a gliche in the system.....a bump in the road, one that may lead her into a ditch, but maybe not. I can't be mad at God for this. But I also cannot pray for God to take this away. I just cannot believe that God PUT this cancer here, or ALLOWED it to happen and that if I pray hard enough, he will take it away. Whether it takes her away from us or not, it is all in the plan (God's plan? Nature's plan?) and I do not believe that those who have no faith at all or who do not pray or who curse God, get less points. If we pray for this to resolve, "God had a plan". If we pray & cancer kills her, "God had a plan." Praying to God makes no more sense to me now than reading Tarot cards or meditating or employing one's inner power (as in "The Secret") to think it positively through. I believe positive thinking (or praying) makes people feel like they can actually DO something. I believe it is very important for us all to band together & support Jill & each other as best we can with our thoughts, deeds, & words. Call it prayer if you wish. Do not feel you have to ask our permission to put Jill on prayer chains or have masses said for her or to smoke Payote (sp?) & sweat it out.....we accept any and all good wishes, thoughts, prayers.

I came to quite the revelation the other day. This may sound off, but bear with me. When I ask, "Why Us?", what I really mean, is "What did we do to deserve such a tremendously heavy and enlightening experience? What did we do to get put in the very center of a HUGE circle of love and support? To receive such grand acts of kindness? To be held so tightly and breathed so deeply by so many of the world's most spectacular people????" This experience was by no means a choice I would freely make, but I do not wish it had never happened, either. If not for this terrible horrible no good, very bad thing (thank you, "Alexander"), Matt, Anna, Jillian, and I could not have caught a glimpse of the power of the love that you, our family and friends possess. Happy Hours, Baby Showers, Family Dinners, Late Night Phone Calls, Runs on the Beach, Impromptu Playdates....we love, but are detached by the multitude of daily, and very much at the time, necessary distractions that encompass our overscheduled lives! We care about our friends...and let them know that while we're working out side-by-side on the Eliptical Machines at Bally's, or during a quick "run into you" at the grocery store, or when our kids play wildly & loudly in our teeny tiny houses while we try to catch each other up on the week's happenings, or even in snappy, chatty emails shot into the dark & caught blindly at 4 am when we have a report to write for a "hot" IEP the next morning.....every one of us have these experiences. But very few of us have been CHOSEN to be whirled into the life Matt & I, at this moment, lead. It is frightening, overwhelming, exciting. I look forward to Jilli's happy moments (most all the time) & the best of YOU every day, now. It is not an experience I CAN trade....nor one I would, as wrong as that may sound. We are in this now for a REASON......God's reason....YOUR God/My God....doesn't matter. The reason has already been revealed to me, in tiny glimpses of spectacularness (is that a word?). Please believe that you are all a part of Jill's story. I'm saving every word, card, gift, photograph to be placed into a treasure box of our little Chosen One....she will always know how important her life is to the world, through all of you. What a gift! I could go on for days......but changing a diaper must bring my philosophizing to a halt (for now). Thanks for listening.

Michelle

Recent Pics

2007-10-14T14:50:00.001-07:00

Items to Make Life Easier

2007-10-14T05:20:00.000-07:00

The following are items we are seeking (but do not want people putting out big expense...if you have lying around in your garage, let us know):

A plastic 3 drawer shelving unit (one to go in the narrow hospital closet to help organize better & eliminate the need for 10 trips when it comes time to move rooms)....something cheap would work great.

Shana...where did you get the pink book basket you brought? I would like to get at least 1 (maybe 2) more so they match. Don't buy them for me, just tell me where you got them :)

Bulletin Boards that would not require hardware to go on the walls (rather, 3M sticky stuff??) for pictures, notes, etc....easier to transfer to other rooms....

Cardstock or posterboard in all colors (especially fall colors & pastels) for picture mounting. My aunt devised this adorable method of showing off pics...thick string hanging at points around room...small clothespins attached at various points on line holding photos mounted on cardstock (again, easy transfer).

A push car or bike that Jill can ride up & down the halls...that is big enough for her (she is kind of between a push car & a pedaling tricycle) & is not super fast on linoleum??????

Photos of YOU and your FAMILY!!! I would really love to hang pics of everyone who loves Jilly all around the room....pick a pic you love, glue stick it onto cardstock, trim a small border around the pic & put it in the mail (672 W. 24th St. #4, San Pedro CA 90731), send it with a visiting friend, or drop it off personally!! Seeing all of your smiling faces all around us would really lift our spirits. Even if you're a friend of a friend or a very distant relative, we want your picture!!

Thanks to Kristi for the table & memory foam!!! Can't tell you what a difference each has made....and the pics you printed out for us....how thoughtful! Sad you missed ballet yesterday...only 4 kids!!!

Thanks to Rebecca for the Teryaki Chicken at the Gas Station. Felt so illegal. But it was VERY good....my Mom couldn't stop raving about it!

Thanks to Jannah for lugging 3 loads of stuff up to our room by yourself on Friday, for your Halloween decos & for including Anna, & for chasing her up & down halls & riding on elevators while we went crazy for a few minutes.

Thanks to Renee Warner for your FABULOUS dish last week (and promise of more Monday! We don't even really KNOW you!!!). You are incredible. Anna baked cookies with Grandma yesterday thanks to that sweet idea of sending home-made cookie dough ready to bake. You are so thoughtful.

Thanks to all the friends who called wishing to visit this weekend. We are sorry to postpone seeing you.....next weekend will be better :) And the friends who gave blood....a few who stopped by after (thank you Todd, and Heather, sorry I missed you! Still haven't had a chance to look in your goody bag!), and many who just came & went, quietly & anonymously. We love you all so much. It's 5:30 am....I got 2 broken hours of sleep this night....maybe I'll try again now. I'll adjust, but my goodness is this a challenge. (Jilly says that ALL THE TIME now, "Oh my DOODNESS!"). Bye for now.....

NG Tube / Premature Burn Out

2007-10-14T04:20:00.000-07:00

Jill had an NG Tube put in today. Pretty standard for kids on chemo...eventually, they just stop eating. Not sure how long it will be there....depends on if we can get her to eat food while it's in (they adjust the amount they give her with the amount she's eating on her own). Just one more tube attaching her to a pole (and it's a short one, too), making it VERY difficult for her to toddle around. This is something I can see us asking for help about.....walking her up & down the halls, playing with her on the floor...there is a lot of maneuvering & adjusting that needs to happen so she can be mobile. Probably will need someone to come every night so that Matt or I can get home to Anna.....but this one is a FUN job (ask Carla & Jessica). When Jill has energy & isn't in pain, she's a riot. Today, she was very fiesty. I would say, "You're silly." Jill: "I not silly....Anna silly". Mom: "No, you're silly, Jilly." Jill: "I not Jilly....I Azha (friend from daycare)". Mom: "You're Azha? Who am I?" Jill: "You Mommy. You Michelle." Mom: "Who's that (pointing to Matt)?" Jill: "Wha Daddy name? Oh, Matt!"

I thought I was getting sick yesterday, so Matt pulled a 48 hour shift. That was really hard on both of us. Matt freaked out a little bit there (understandably) about people coming to visit, but I think the doctors/nurses/and my pleas for him to lighten up talked him down. We are very worried (Matt especially) about Jill catching a cold or something but have been assured that we can chill out as long as sick people don't come & everyone washes hands! And even though it will be difficult, people probably should not be hugging/kissing the baby. (Good luck with that...she's irresistible!). We cannot get through this without your visits. I, especially, would go insane. So we will try & keep it to a minimum at one time & play it by ear. However, as of this minute, the strike has been called off. You can visit (and I hope you will). Regarding visits, they are not strict about hours, really. Though it's officially "over" at 9pm...if you are already in the room, they are not going to kick you out (unless we are sharing a room) & if someone gets here after 9pm & we really need a helper or a friend, just have the visitors desk downstairs call the Ped/Onc Nurses' Desk & they will let you up (call us first, though).

Wipes Alert!!!

2007-10-12T23:20:00.000-07:00

Okay, our little pooper needs wipes....I'm not kidding....Jack, the 3-pack you brought last week? Gone. The floodgates have opened (it's a good thing). Anna has ballet in the morning so I cannot bring them up....can anyone bring Matt some baby wipes first thing in the morning (Sat, 10/13)? Even if it's before 8am, the front desk will call the nurses' desk & let you up. Matt can meet you in the waiting room...call him 310-846-7254. Or on hospital phone 562-933-8323. (He is now using the hospital dry cloths & wetting them...not very effective).

Visiting, Parking, Other.....

2007-10-12T21:15:00.001-07:00

If anyone (who will likely be visiting more than 4-5 times this year) is interested in parking for less $$, we just got some "insider" info. Email me for details.

Jill's WBC count is great! The luekemia is really responding well to the chemo! However, her body is not....she is (as was expected) very tired & very achy & very miserable. She is a little less herself every day this goes on. But tonight is the last night of chemo this round & her immunity should get better & better over the next 3-4 weeks. We are saying "no visitors" until further notice due to our fear she will contract a virus. Thank you for understanding & know that if you want to see one of us (and we are available to leave the room), we can meet you in the waiting room outside her floor. If you visit during blood donor center hours, you can kill 2 birds with one stones (and get free parking).

So many people have volunteered to feed us. We appreciate it immensely, and just ask that you check the calendar, add it (so 5 people don't bring food on the same night), and call us....we'll let you know if you should drop it off at the house or the hospital. We won't turn down meals (until our freezer is full :). We also appreciate the people who have offered to grocery shop for us. I have not started a list yet. I will do so once my mom leaves (Sat, the 20th), trust me!

I have more to add, but need to pee. Be back later :) Nice, Michelle. Real nice.......

Blood Confusion

2007-10-11T10:35:00.000-07:00

There's been some confusion (likely induced by ME) regarding blood donation designated specifically to Jill. She has a common blood type...it is highly unlikely the hospital will run out of her type (and I'm sure they have a back-up plan if that does happen). There are certain hoops one needs to jump through & paperwork that must be completed for that to happen. As it just confuses people & may get tricky....if you are willing to donate, just know some sick child (or adult ) will receive your blood, and it may be our little Jill. Also, I was just informed NO BLOOD RELATIVES (that includes cousins....sorry Chad & Casey) ARE ALLOWED TO DONATE SPECIFICALLY TO HER (in the off-chance one of us are a possible marrow match, her body may develop antibodies to your blood & reject your marrow). Whew. So many rules. Thanks for understanding (this doesn't mean "don't donate", even blood relatives should donate, just not directly TO JILL....thank you for doing so!!).
Michelle

Oh, yeah, forgot about us :)

2007-10-11T08:59:00.000-07:00

So, my back is nearly out (for those who don't know my back is VERY sensitive & this "bed" is miserable)....does anyone know a good chiropractor (and by good, I mean CHEAP) or massage therapist who could help work these knots out before I am incapacitated?

Some of you have mentioned herbal (or other) drinks/teas/supplements to ward of illness. If you could give me info on where to get those things, I would really appreciate it. We both just got the flu shot, but are so fearful of coming down with even a cold (and with lack of sleep & not really being into food, we're more at risk). We know others would step in to be at the hospital with her...but she's so scared right now...she needs her Daddy & Mommy.

Thanks a lot!

Banking Cord Blood

2007-10-11T08:44:00.000-07:00

If you are expecting a baby, please read! If not for Jill, for your own child. We buy insurance to protect our assets.....why not our children? If I had known about this at the time Jill was born, she would have a very good chance of beating her cancer....not that she doesn't without it, but, you know what I'm saying. Please forward this info to anyone you know who is expecting a baby! Please!

http://www.leukemiafoundation.org/stem-cell-research/

Visitors, Precautions, Thanks

2007-10-11T06:35:00.000-07:00

A lot of people have asked about visiting Thursday (an incredible # of people....is Thursday a holiday or something? I wouldn't have any clue what's happening in the real world.) Normally (HA! What's that???), it would be fine, but the chemo is hitting her little body really hard right now. She's not eating & hasn't pooped in almost 4 days (too much information!!!!)....this is a big concern with these kids as if they get "backed up", they can contract sepsis, & there's only one way THAT ends. The crazy things we're freaked out about around the clock....a tiny bit of diaper rash, a very low-grade fever, "my ear hurts" (still...she came in with an ear infx & had already been on antibiotics for 5 days), stuff that I would blow off every day before. It's so scary to think, "Oh my God. If we don't control this diaper rash, that could develop into an infection, and she could....she could DIE from diaper rash???" Yep. This is the first time in my life that people (doctors/nurses) are validating my neuroticism. We can't give her a sip of water from a cup that's been sitting out more than 2 hours. (Anna usually wakes up drinking out of the cup she had from 2 days ago.) We have to wash our hands after touching anything that is not "hers"...do you realize how many times a day you do that? You guys, just pray & wish for us that, in the immediate future, this innocent little child will not so suffer too much. It is so heartwrenching to see your baby uncomfortable/in pain & not be able to alleviate it one bit. She is so fragile right now. We are so scared. I need each & every one of you to lift us up....as you have been, every day. Without love surrounding us, we could not do this.

On a lighter note, we would love to bestow some thanks on some incredible people......

My Mom, for being such a help right now. You are always "standing by" waiting for your next order of instruction...not batting an eye, or hesitating a bit. Anna needs you here, right now. I wish you could stay forever.

Jason & Cecilia Hilkey & Heather Bunn for the shiniest, brightest, most enormous sea life balloons I have ever seen. Jill LOVES them..."Dah-fin!!! Way-oh! Fissie!!"

Karen White for your kick-butt banana bread. I cracked up when I read the label "Castrated"....I actually had to ask Matt. No nuts. Obvious. The gift cert to the cafe will certainly be used....I didn't say wisely. I've heard they have some incredibly fattening brownies. And the pre-made labels for our fridge food! Simple, yet ingenious.

My Speechie friends at Launch for taking my mind off my tragedy for 30 minutes while we had lunch together. Thank you from the bottom of our hearts for donating your Emergency Happy Hour Fund. It will cover 5 months of parking at the hospital (do you believe we have to pay for parking????).

The director of Anna's preschool, for allowing Anna to attend 5 full days a week at 3 days a week tuition. This will allow some stability & consistency in her week. (Anna's BFF, Keili, is gonna pee in her pants in celebration....apparently, she's much harder to get ready on days Anna's not there....so sweet.).

Cingular Wireless for donating 750 rollover minutes into my acct at no charge, to "tide us over".

Countless friends who have directed us to resources (financial & other) that will help get us through this.

And lastly, to my Aunt Mary & Uncle Brent for driving down from Fresno yesterday to surprise us with kisses & hugs (and way too many presents), stay for 6 hours, and drive back that very night. Mary's decorating job really lifted my spirits...now if we could just get you people to send pictures to hang from the clothespin line she created!! C'mon people! Step it up! One family photo from each of you is all I ask!

Oh.......a number of people have been asking where to send packages. You can either send to the hospital (address is somewhere in this blog...don't have it memorized yet), or to our house:
672 W. 24th St. #4, San Pedro CA 90731. And we thank you. We could never have imagined this deluge of goodness coming from people with their own challenges, trials & tribulations, committments & responsibilities.

Call before you visit...every day is unpredictable....don't refrain from calling or writing because you think you are "bothering us"....don't come if you even THINK you might be sick....wash any used toys/books you want to lend to Jill & label them so we can get them back to you...and please wash your hands as soon as you enter the room....if you forget, you will be shot :) Also, when Jill's system is wiped out (during & for the first week after chemo, we're asking that no small children come....as much as she would love the company, those little buggers are just too germy :) Thank you for understanding. Can't wait to see you soon!

Love, Michelle

Sunshine & Thanks

2007-10-09T01:47:00.001-07:00

Jill had a pretty great day, all things considered. Turns out her "leg pain" was not about her legs (which makes sense, as most of her leukemia cells are gone now) but a HUGE bruise on her hip bone from the bone marrow draw. She can't sit or lean or lie down without pain meds...and that's okay, cuz give that girl some Morphine, and she's lit!!!! Hoo-HA! Perky as all get out. And FUNNY. Repeats everything you say, with a twist. I say, "Okay?" And she says, "Oeey Dotey Awisotey" (Okey-Dokey Artichokey). I say, "Time for medicine...and then?" She says, "I dwops (eye drops), den bus teef (brush teeth), den doh seep (go sleep)! Otay? Otay!" She does all procedures on dolly first. I say, "Did dolly fuss?" She says, "No fuss!" Then she fusses like a poked & prodded little baby should. Tonight, she left the room for the first time (willingly & not on a stretcher) since Thursday....steppin' out in ruby slippers, clutching her Toto dog & squawking "Hay-Yo!" to every live body she could spot. All the while, Mommy fretted about holding her hand, so she wouldn't fall over (she was weak in the knees) & keeping the IV tubes from coming attached from the pole or the baby. She climbed on chairs (THAT was fun....just 20 adjustments to cords each time she decided to try a new chair), scooted herself (or rather flew down the hall) on a push car, "T'mon Mommy! Yet's DOH!!" and sat for a precious 10 minutes reading while my friend Carla and I wolfed down her incredibly yummy cinnamon spaghetti squash dish (I think I shall dream of that meal tonight :). She played pretend with little people donated by Helena & Jack....these little people are having more in-depth conversations than I have with most of my friends....(who am I insulting? myself? my friends?). So, needless to say, all is right with the world (right now, today) after a pretty messed up falling apart kind of morning (thank you, Rebecca, for being there, hanging up pretty lights when I arrived this morning to an empty baby bed, and no husband....Jill's lumbar puncture had been moved back & I would have freaked out, not knowing this, if she had not been there....and thanks for staying, and listening, and crying with me). And while we're on the subject of thanks, many are due so far....I fear I will forget someone, so forgive me if it's you (maybe you just need to try harder). So in no particular order:

Kristi, for being my LAUNCH liason, for organizing & posting & being the dreaded "contact person", for taking care of Anna, for coming up with really creative ways to distract her from the drama, for making copies of keys (more than once?), for showing up at the hospital at just the right time (while Jill was in surgery) buying coffee & taking our mind off of the worst disaster ever to hit our family. And for continuing to hold us up & support us (along with Ian, the Care Package King, and darling Keili, the Opposite Twin....oh yeah, and Keira, that little bundle of cuteness)

Dina & Jim, for caring so much for all of us....taking Anna to swim lessons and taking care of her whenever asked....for offering to rearrange your schedule & quit other responsibilities (many of which, you shouldn't have in the first place...I'm just sayin'....). For lending my mom your car during these next 2 weeks (and thanks to Paul & Sharon for lending theirs to Dina...and for the fridge, which we're not allowed to have), and for all the glorious meals you're going to make us over the next few days (I'm just kidding....no you didn't sign up & forget).

Shana for being there to listen on my worst night ever when visitors aren't allowed and all I can do is stare at the clock & listen to the beeps & watch my sick baby's chest rise and fall. And for coming as soon as you possibly could the next morning even though Mike was cantoring at church, which he cancelled. For the organizational tools, books & toys....food....delicious soup! And for the only pics I have up so far...because I just haven't gotten to it...those sweet babies of yours make me smile every time I enter the room.

Rebecca, see above! You really saved me this morning!

Jack, for the 10 cans of Mandarin Oranges, which are the only thing Jill has eaten since starting chemo. For the wipes, the books (she LOVES the Tails book!), and other misc. goodies. And for the Heineken. You're going to get us kicked out of here, dude.

Ann for the gobs & gobs of decorations which I have yet to put up....and the means with which to do so (you think of EVERYTHING)....the darling books....lift the flaps & pull the thingies are a big hit!....for thinking of Anna, for lunch....for this year's Halloween costume (looks like there'll be 2 Dorothy's in our family this year) & your presence.

Rhonda, for picking my Mom up from the airport & being the first of gobs of friends to make such a lasting impression on her. I'm pretty proud of all of you.....it's fun to show you off!! And for setting up the blog. I never would've thought of this...does anyone actually read this malarky?

Michelle, for appearing at the door out of the clear blue with the first signs of blood donation written all over the crook of your arm and for deciding to drag a bunch of your fellow civilian soldiers out to the hospital on Friday to donate. For chillin' with me, for identifying with me, for making me laugh, & for your promise of future visits (turns out you can do an overnight as long as you're over 18!).....and I've only met you 3 times before. You so rock.

Aunt Mary Wonderful, for the sweet lilt in your voice that makes me feel like I'm home, for your unwavering certainty that our Little Luna will squash all the bad bugs, for the songs, for the zerbertz, for the art projects already swimming in your head, for the assurance that you'll be here soon cleaning my toilet.

Aunt Annie for reminding me that if you can beat the odds at the slot machine, you can certainly beat cancer. For your no doubt attitude that she'll do it with both hands tied behind her back & one foot in the air. And for making fun of how computer illiterate you are even though I set you up to fail. Don't listen to me....email Kristi....she knows EVERYTHING.

Aunt Sue for the words of encouragement, the art projects to come, the hope for Thanksgiving.

Aunt Deb for always being positive & for keeping me informed.

Aunt Grace for the gentle words of encouragement.

My sisters Beth & Renee, for feverishly planning fundraisers and we're only 5 days in.

Jannah & Cristina for coming on the first night I was on my own here....for holding Jill while Matt & I got "educated" about what a terrible illness this is, for helping me schlep to another room in under 5 minutes, for listening, for holding me up.

Claire, for popping up so many times so far to encourage, and make sure about things. It's so great to know so many nurses!

Dad & Mom, OF COURSE, (I almost didn't mention you...you're a given!) for coming to the rescue on a dime. Mom, it sucks you can't come to the hospital with your cold...you've got 2 weeks to kick it!! But it's so nice for Anna & us to have you around...thanks for all your help so far....Dad, you're a real PriceChopper. I commend your bravery bidding low. Now you can come visit 5 more times!

For all the other friends & family who've called, written, prayed, made meals, and especially to those friends of friends who don't even really know us (thank you Renee. what a sweet surprise), you are all so incredible. I am so tired I cannot see straight....I'm sure tomorrow I will realize how many people I failed to mention. I do not trust that I can keep up with all of this goodness.....you're just all going to have to believe that Matt & I are amazed & so grateful for what you have done & what you plan to do for us in this, the most trying time of our lives. We could not do this without you!

Please Give Blood If You Can

2007-10-07T18:21:00.001-07:00

Please spread the word that the blood supply is really low right now...and platelets even more so (Jill's already rec'd many transfusions of both). While visiting us, people can donate at the Blood Donor Center (not sure if it's in Long Beach Memorial or Miller Children's, but the bldngs are attached)....562-933-0808...Donor Center Hours are M/W/F 8:30-4, T/Th 10-5:30...1st Tues of month 11:30-7pm. You should eat a meal before donating. Call about platelets....I think you're supposed to take Prednizone right before (mild side effects) and it is a 90 minute procedure. Parking will be validated. Again, thank you!

Happy Jilly

2007-10-07T15:43:00.001-07:00

Little Luna's Big Deal

2007-10-07T00:09:00.000-07:00

Today was rough for Jill. She's having a lot of leg pain due to the leukemia cells loving the marrow in her "long bones". It's so hard to see her writhing in pain & there's nothing we can do. Thank God for Morphine. I'm in a bad head space right now, it being 12:15 am & so tired I can't sleep. I'm mad. I'm hurt. I'm in a fog. I'm lonely. But wait....this is not about ME. Ugh. This just f-ing sucks. Jill's watching Dora right now, sucking her thumb & twirling her hair....oh, those curls....I'm going to sooooooooo miss those curls! Ann brought her a Dorothy dress & ruby slippers today. She's asked for them a bunch of times, but I think her feet hurt too much to keep them on. We sing a lot. And her language skills still cease to amaze me. "Tate dis off me, Mommy" "Dora and Boots do to beach" "Montey pit up Tin Man and frow on foor". The other night, when Matt was with Jill, she said "I miss Mommy....Mommy yuv me....I yuv Mommy....Anna at home....Jilly no home". Sigh. She wants to hold my hand right now, so I guess I'm done typing. So disjointed is this entry. Sorry. Didn't realize you were going to get to see inside my soul, huh? (Geez, I just came for the update....).