Thursday, June 26, 2008

Friend Update

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

Thursday, June 12, 2008

Living and Loving Life!

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!

Monday, May 26, 2008

Semi-Final Entry (I think)

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."

Monday, April 28, 2008

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

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.

Saturday, April 19, 2008

On the Upswing

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.

Friday, April 18, 2008

Bad News/ Good News

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).

Saturday, April 12, 2008

Nobody Knows

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.

Thursday, April 10, 2008

Tests and Procedures and Shots, Oh My!

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).

Wednesday, April 9, 2008

Recent Pics


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....

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.

Monday, April 7, 2008

Sickies All Around

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.

Saturday, April 5, 2008

Fever

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.

Tuesday, April 1, 2008

Beautiful Day

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.......

Monday, March 31, 2008

The Difference a Day Makes

...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!!

Thursday, March 27, 2008

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

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.

Tuesday, March 25, 2008

Nothing Nice to Say

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.

Sunday, March 23, 2008

How Could I NOT Share This?????

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.

Wednesday, March 19, 2008

Big News

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......

Tuesday, March 18, 2008

Now Entering Our Final Lap

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).

Wednesday, March 12, 2008

Shared Perspective

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.

Saturday, March 8, 2008

Don't Forget to Include Your Contact Info

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 :)

Tuesday, March 4, 2008

Day 29 and counting.....

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!

Saturday, March 1, 2008

Are you building cathedrals?

(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.

Tuesday, February 26, 2008

Good Day

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?