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 26, 2008
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 emotion
al. 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."
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.
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.
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).
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.
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).
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.
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.
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