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Week 15
Sunday Aug. 15th--Day Twenty-Nine
8:45pm--I've cried the vast majority of today. Andrew and I woke up this morning to find a different baby in the bed. She was swollen, red with a dark rash (petichea--burst capillaries) all over her face. She needed a platelet transfusion bad. She was crying and overall looked just plain miserable. Yesterday, her weight was 9.9 kilograms. Today, it was 10.57--a considerable jump in less than 24 hours. Her temperature was over 102, her heart rate was up, and her left eye was swollen shut. Not a pretty sight today.
Dr. Lenarsky came in shortly after. He was noticeably concerned about the baby. Nothing that he has given her within the last two days have given her any kind of response. So, he decided to stop her two antibiotics and start another, as well as stop the neupogen. Neupogen can cause flu-like symptoms and general discomfort. The vancomycin was making her more itchy and irritable. He didn't want her to be getting something if it wasn't making a difference and just making her feel worse.
Here's one of the biggest things of the day (yes, there's more fun news!)--Her white cell count dropped again to 900. This is alarming. What could it be? He gave us two scenarios of what is going on with Allie. Here is what he presented to us:
The Good: Allie's good cells are going down, as are her blast cells, while the donor cells will begin to come up. This, of course, is the most optimistic of the scenarios, but not the one he thinks is happening.
The Bad: Allie's good cells are going down, her blasts will begin to come up, and the donor cells aren't doing much of anything. This is the one he really believes to be happening inside of our girl. Bottom line--he thinks her leukemia is growing in her marrow and that she is in really bad shape.
A Do Not Resuscitate Order has been placed in Allie's chart. "No heroic measures" is how it was described to us. If something were to happen, they could give her oxygen or bag her, but we do not want her placed on a ventilator and life support to prolong her suffering. Scary that I have even had to make this decision, but it is one that we feel strongly about. Please respect our wishes with that decision. This is definitely not one we ever wanted to make, but it is a serious situation that we are in right now. Parents of babies Allie's age are worrying about baby proofing the house, teething, crawling, and introducing more and more solids. They are going to the park, playing on the floor, and even just going to the grocery store with their children. We, on the other hand, are laying on a hospital bed with our daughter, begging her to live. Begging.
I didn't want to leave her side today. I laid with her all day until I finally stepped out around 6:30 for dinner in the waiting room. I sat and studied her every feature. I must have stared at her for hours. Every thirty minutes or so, she would open her eyes (or eye I should say because it was usually only her right eye) and look at me. I wanted to be there every time. I want her to feel loved and needed. I want her to know that we are here with her and will always be with her. I want her to know that she can come back to us and live a long full life.
Prayer is not coming to me right now. Someone said, "You know, a lot of people are praying for you." My response was, "Well, who the hell is listening?" I don't want to hear about God's plan, though I believe that He may have one. Its honestly not a comfort to me right now. I don't want to know that He will protect us because I don't feel very protected. Yes, I am a believer. No, I haven't given up. But I just DON'T UNDERSTAND!!! Please respect that right now and try to refrain from giving us religious advice. Its not that I am resistent to God, I just can't hear it right now. You probably wouldn't understand my feelings unless you were in this situation. I hope you never have to understand. Feel free to pray as much as you feel comfortable for our girl. Even if I can't right now, I appreciate that you may be able to help carry that weight for me.
Dr. Lenarsky has called all day to check on her. We have increased the amount of fentanyl she is getting per hour and put her on toradol for her fever instead of tylenol. She struggled today with tylenol and we couldn't get her to swallow much of it. Her swelling has come down a little bit, but not much. She had two doses of lasix and one dose of bumex to help her pee. When I feel her face, it feels less swollen, but we will see what her weight is tomorrow. She needs to pee some more.
You know, we have lived in this place for over three months now. In the past three months, she has endured so much. We have had moments like today. Moments of desperation. But, we have had beautiful moments together. Moments of laughter and smiles with more love than I could ever ask for. Collectively, I've been happy here. I've been happy because my girl has been alive with me. At the end of today, I will try to be happy because my girl lived through today. Doesn't make me any less scared or nervous, but it does make me grateful for another night in the bed with her. Another chance to hold her. I don't know what tomorrow will bring. If she wakes up tonight in even a semi-decent mood, I will play with her. I will be there for her.
Tomorrow, we will have the same two tests as last week run again. We should know results by Tuesday. I'm so damn scared for my precious little girl.
Tomorrow, my friend Sam Eisenberg gets to go home from the hospital. He engrafted beautifully, with only 6% of the cells in his body still being him, all the rest are Ethan! This is fantastic news for the Eisenberg family. I know that leaving for Dana is very bittersweet. She want s to be home with her boys, but it scares to leave with Allie doing this poorly. I will miss her sorely, as I know all of us will. Annie will be sick of me bugging her so much with Dana's absence!
Allie is crying again. I need to be with her. We will always be with her.
Since our guestbook is down, you can send us messages through the msn group http://groups.msn.com/AllisonsBabyCenterAngels/general.msnw. You just have to sign up to be a member, but it is free to do. I believe there is a post in there that says, "To the Scotts." Make that our guestbook for the time being. I could use some words.
Jenny, Andrew, and Allie
Saturday, Aug. 14th--Day Twenty-Eight
9:30pm--We had two different babies today. We had the one that smiled and blew raspberries at everyone, and the one that screamed and had to have her arms held down to keep from scratching. Her rash looks bad again, but her eye is no worse. With drugs, she seemed to do well. But it took fentanyl, benadryl, tylenol, and versed. Karen is calling the doctor right now to try to get her on a fentanyl drip as well as the versed drip. When she gets upset, she wants to do nothing but scratch her face.
With Allie crying now, I think I will cut this post short. We are thankful for the good moments we had today, but it is hard to watch our baby hurt. She is not comfortable or happy. Please pray for her comfort. Its gonna be a long night.
Jenny, Andrew, and Allie
Friday, Aug. 13th--Day Twenty-Seven
9:40pm--I'm home tonight after a REALLY long day of crying. I think we are on an every other day plan. Yesterday was good, so that means today.....well, it sucked! We had a rough night, giving me only two hours of sleep in the night, then another two and a half early this morning. She woke up crying and cried most of the day. I'm worn out, to say the least.
Her left eye has a strange thing going on. Looks like she has a shiner, but it is getting swollen. She keeps trying to itch it, making her look even worse. Dr. Lenarsky and Dr. Goldman both came in this afternoon to check on all the kids. Dr. Goldman is going out of town next week, so he just wanted to stop by socially. They looked at her eye and were concerned that it is an infection. Her eye itself looks fine, just the skin below it. It could be that she scratched herself, it could be that she has cellulitis, an infection of the skin. To be cautious, they are treating her with antibiotics.
Steroids are also starting today. Dr. Lenarsky is concerned with the amount of diarrhea she is having (about three or four a day) and with the eye problem added, he feels it is time. We are only starting with steroids, not anti-rejection just yet. Her white count is down to 1,300 and she needed a red cell transfusion today. He is putting her back on neupogen to boost her white cell count.
Tonight, we are just relaxing. After all day of crying, I think I was about to lose my mind. We left around 7:30 to come home. Once home, we both caught the cleaning bug. I targeted Allie's room, organizing her toys and her clothes. I packed away all of her 0-12 months clothes. It took three large bins! I can't believe how many clothes that baby has! She has a closet full of dresses and a drawer full of onsies and nightgowns in the hospital that she is currently wearing. You know, I didn't have any trouble packing all the clothes up. My rationale for doing this was to empty her closet and drawers for when she comes home. She'll need her space. We are also loaning, Karen, one of our beloved night nurses, Allie's baby clothes. Karen is having a baby girl in Oct. and doesn't have many baby clothes. As generous as people have been to us, its the least we can do for Karen. She has done a lot for us and Allie. She adores Allie, and Allie loves her too.
Think I will keep this posting short. Andrew is still battling making the guestbook work, so please bear with us. Have a good night Jenny, Andrew, and Allie the screamer
Thursday, Aug. 12th--Day Twenty-Six
10:35pm--Things change up here faster than you can blink an eye. You can't rate an entire day because there are both good and bad moments. Today is a prime example. Let's start with the middle of the night. Miserable. She cried and fussed every hour to two hours. The only way she slept was on my chest, so I was uncomfortable all night (Dr. Lenarsky teases that there is a word that described the amount of spoiled this child is!). At 6:15 this morning, I asked Andrew to switch with me until he had to get up and get ready for work so I could get a little rest.
Once she woke up, Allie was doing well. She played with her Livestrong bracelets. Andrew and I each had a yellow wristband, but Allie has confiscated them both. She took a two hour long nap and woke up happier than I've seen her in days. As soon as I saw that big grin, I crawled into the bed with her to play and snuggle. We giggled at each other for about thirty minutes before my mom arrived. Allie played on her mat for the first time in almost a week. She only got mad when we changed the code brown before it turned into a major disaster.
Amazingly, her rash is almost completely gone. This morning, it was still there, but much less pronounced. She had several bruises on her body, including a large one on the top of her head, due to low platelets. Dr. Lenarsky decided to hold off another day on the steroids and cyclosporine. As we were doing her sponge bath tonight, we kept remarking, "Where did it go?" There are remnants of the rash, but it is nothing like it was. Is this a good thing? Does this mean that her body has accepted the graft and the donor cells have had a chance to grow? OR Is it a bad thing? Could it be that Allie's cells have completely taken over so there is no graft left to find? These are answers we don't have. Dr. Lenarsky seemed to indicate that the rash wouldn't go away on its own. So, what the heck is going on?
Things got scary this evening around 7 when Allie and I woke up from a short nap. Her head felt so hot. Sure enough, temperature of 102. If Allie were a "normal" baby, we would give her motrin or tylenol and call the doctor in the morning if it persisted. Here, the nurse calls the doctor within minutes, takes blood cultures, gives tylenol, orders a chest X-ray for the morning, and starts the baby on antibiotics. Our hope is that it is not an infection, just the GVHD, but we have to err on the side of caution. An infection can turn fatal quickly for leukemia patients, so it is imperative that we move quickly.
Since 7, we had some of the best moments that we've had in over a week. She got tylenol and has since been in a great mood. Its 10:35, and she is in her Hop n Pop smiling at the arrival of the caterpillar on the TV announcing the start of a Baby Einstein show. She ate some oatmeal and played peek a boo with Michelle on the bed. We've done nothing but laugh and smile for the past two hours. OK, what is going on? Is this the same baby that was crying like crazy yesterday? Doesn't look like it. Michelle reminds us that there is nothing normal about this kid. She is the one who doesn't follow the books. Dr. Weinthal laughs and says she may be writing her own book because she sure isn't following any one they know of.
Last night, I hit the send button to update my journal then followed my normal routine of going to Dana's journal. I was amazed at the parallels between our two journals last night. Without discussing our thoughts, we had both expressed several of the same things. We mentioned it this morning. How odd to find someone that you connect with so well up here. Living here brings you closer to people in a short time than in the "outside world." I see Dana more times in a day than I see most of my friends in a week (and some in a month!). Proximity helps. Dana doesn't leave this floor without passing our room--we're on her way out. Our blinds are usually up for people to look inside (and be horrified at our mess). I love seeing my friends in the window and be able to wave or make a funny face at. If there is time, we step out of the room to talk and have adult time. Adult stimulation and conversation is vital up here. Dana caught me this morning so bored that I was watching reruns of Dawson's Creek! Confession--my mornings are usually so boring that I've been watching Dawson's Creek every morning on TBS. I've NEVER watched this show before. Pathetic, I know.
Thought I would end tonight with some fun pictures of Allie. Please pray for her NOT to have an infection. Pray that the fever doesn't spike again.
Thanks for checking on us today! Jenny, Andrew, and our medical mystery, Allie
By the way, all these pictures were taken today--yes, we had to wear three different outfits today. I said we kept it from being a major code brown, but it was a code brown nonetheless. That pink skirt didn't stand a chance!
Wednesday, Aug. 11th--Day Twenty-Five Happy Birthday, Debbie--I love you!
10:45pm--Walking around the floor at night was the only thing that kept Allie happy for an extended period of time. We walked around the floor in a circle for twenty minutes. She didn't cry at all. Yeah! Give you any indication of how the rest of the day went? Yeah, it was that good. Needless to say, I'm tired. She would only sleep on top of me and cried at every diaper change (had to put her down, you see). When she was calm, I tried every toy I could to keep her entertained. This child has lots of toys. Not much interested her except for my yellow Livestrong (Lance Armstrong's foundation for childhood cancer research) bracelet. Who needs a real toy?
My two loves are snuggling in the bed right now, trying to get Allie to fall asleep. Having Andrew here at night has helped me a lot. I feel safer knowing that he is right on the couch next to me (not that he always hears the crying once he's asleep! Sorry, honey, couldn't resist it). Being away from him in the evenings compounded the situation. I missed him so intensely. He would leave around nine or ten. As soon as I saw him online, I would start instant messenging him. The nurses would laugh at us because we would chat for a while even though we had just left each other. Didn't matter. We need each other that much.
Dr. Lenarsky and I had several good conversations. He came for his normal rounds this morning, but also returned this afternoon to check on Allie. I always like conversations with him. He is extremely intelligent, witty, and kind. He will never give you anything but a truly honest answer. Sure, not all his answers are the ones you necessarily want to hear, but they are always honest. I love having three such different doctors all working together to take care of our kids.
Allie's counts were basically the same--her whites were at 2,700, reds were a little low, and her platelets were 8,000. Since she was not showing signs of bleeding, Dr. Lenarsky decided not to transfuse her for platelets today. I expect she will get some tomorrow. Her Nana donated yesterday afternoon, so maybe she'll get Nana's platelets. We always like to believe that is what happens. Since her platelets are low, she is getting peticheal spots, they look like little red dots and are burst capillaries) in various places on her skin. I've also noticed a few more bruises. No blasts were detected in her blood. Lenarsky thinks we are nearing the time where we will need to intervene with steroids to treat the GVHD. He doesn't want it to get out of hand. I think she will start steroids either tomorrow or Friday. It depends on how her night goes, what her rash looks like in the more, how irritable she is, and how much we think she can tolerate. If her diarrhea persists more, we need to definitely take action sooner than later. Her main problem today has been discomfort from the rash. She itches. We've pretty much kept her with benadryl in her system most of the day. Between the benadryl and the versed, we could keep her comfortable.
Baby Fieldon had his cord blood transplant today. He had an unrelated cord blood donor, just like Allie, though his match was a perfect six out of six match. Blood type has nothing to do with matching. There is something special called your HLA (I honestly do not know what it stands for) that tells you several factors in determining a match. If all goes well, Fieldon will stay here in the hospital for up to 100 days then be able to go home with his family. Annie's family had a little party for them in the family room this afternoon. They had a big cake that read, "2nd Chance Fieldon. Out with the old, in with the new!" It was very special for their family. I want nothing but good things for this family. I really like Annie. Don't think I've had a day go by in several weeks where I haven't seen both Annie and Dana.
What will I do next week when "Sam I Am" goes home? The thing I think I will most the most is our goodnights every night. I look forward to saying goodnight to Sam. When we open the door and he sees we are there, his mouth turns up in a big smile. It is at that moment every night that I want to scoop him up and hold him. The urge is so intense at times. I've come to love this little boy as if he were my own. I celebrate his successes. I saw him in the hall this afternoon completely unhooked from his lines this afternoon walking with Anna, his nanny. Couldn't help myself but to stop what I was doing and do a quick "Freedom Dance" with him. I am very pleased that Sam is doing well. I hope that it continues on this path and he gets to do an even bigger Freedom Dance when his little feet hit the pavement outside of this building. As much as I will miss my "sister and nephew," I want them to go home too. I want that for all of us.
Tomorrow is another day. Our hope is that it contains a few more happy moments and smiles. I'll walk around this floor half the night if it would make her happy. We have to walk around in the evenings because there is less traffic on the floor. No way we are going to be able to get a mask on this child. She would rip that off so fast. Andrew and I both have to be there. One pushes the IV pole while the other walks with the baby. We switch off because she is so heavy it starts really hurting your arms! What an adventure. Some kids go to parks, others peddle items on a cart at a nurse's station. Huh.
It's late now, and Allie may be up frequently in the night. I need to sleep while I can.
Night, Jenny, Andrew, and Allie
Tuesday, Aug. 10th--Day Twenty-Four
10:25pm--Not terrible news, but certainly not the news we were hoping for. We are going to stay this course for another week to test again and decide if we take further action. Her GVHD rash looks terrible. Certain areas have turned in to one solid blotch. Dr. Lenarsky says that it can get so bad that it blisters over. It irritates her so bad that she buries her face into your shirt to help itch her face. We will not treat it unless it gets too out of control. And we prayed for this for our baby?
Allie has had some very happy moments today. With the doctor's permission, she got a chance to leave the room tonight for the first time in six weeks! We first knocked on Annie and Fieldon's door. Annie had to put on a protective robe and mask to get near Allie. This is to protect Fieldon. His transplant is tomorrow! Please pray that it goes well and his body will be rid of this genetic disorder for good. We then walked to Sam's room. We opened the door and said hi. As soon as Sam registered the fact that Allie was with us, he began jumping up and down on his bed and we all clapped for Allie. Dana walked to the nurses station and even let Allie take a lick of her tortilla chip. What a bad influence she is!
Allie received a wonderful gift today. I have to confess when I first heard that a "life-sized giraffe" was coming our way, I was very hesitant. What in the heck was I going to do with it? A giant package arrived today. Inside was a five foot tall giraffe from a company called poshtots.com. This company had been contacted by someone on Babycenter and they donated the giraffe to Allie. I was still very hesitant when it came in to our room, but I must admit, I love it too now. It is absolutely gorgeous. It is sleek and elegant looking with muscle definition. Allie was very excited to wake up and see it! She has her own mini zoo right here in her room!
The guestbook will hopefully be up and running again tomorrow afternoon or evening. We miss your comments. I promise to let you know as soon as its working again.
Love, Jenny, Andrew, and our giraffe loving Allie
This is just a quick post to update everyone on the XY test. Dr. Lenarsky called Jenny to give the results and they came back at 6%. I know everyone wanted 7% or higher, but this is not terrible news. We are staying on the course we started last week. We are letting the GVHD do it's thing and hopefully we will see a rise in donor cells next week. Right now Jenny and I are hopeful. As everyone knows, Allie is a fighter and she can make it through all this. Jenny will post more later with more details.
-Andrew
Monday, Aug. 9th--Day Twenty-Three
9:30pm--Versed is the world's greatest drug. Allie was placed on a versed drip, giving her a small amount continuously to help take the edge off. She cried off and on most of the day until she was placed on the drip at 4:30. Then, it was my baby back! The baby who actually smiles! Ah...sweet baby.
The XY test has not come back yet. This afternoon, we had a visit from both Dr. Weinthal and Dr. Lenarsky. Whenever we see more than one doctor at a time, our hearts always skip a beat. Then, we realize its Monday which means its the changing of the guards. Dr. Lenarsky is now on this week doing hospital rounds while Goldman and Weinthal handle the clinic. Phew.
The flowcytometry test has come back in. This test was what told us Allie had leukemia in the first place and what we had after both of her bone marrow biopsies. It is a very sophisticated test that tells what percentage of leukemia she has in her cells. The bone marrow is more accurate to test than the blood. However, Allie's blood came back today with LESS THAN 1% LEUKEMIA!!!!!!!!!! YIPEEE!! WOO HOOO!!!!! YEAH!!!! GO ALLIE!!!!
OK, got that out of my system. Let me explain a little further. We are still needing the results back from the XY chromosome test. We need more cells in her body to be XY. Right now, less than 1% of her cells have leukemia, but we don't know for sure how many of those cells are Allie's and how many are the donor's. The problem is that all of Allie's cell have this particular chromosome that is linked to her leukemia. This means that if the donor doesn't take over, it is very likely that her leukemia will be a much higher percentage eventually. Don't you just love this roller coaster ride? Please pray hard tonight for those results tomorrow. If Dr. Lenarsky feels this was a success, we will be able to continue on this course without myelotarg treatment for a few more weeks. Myelotarg is very toxic to the liver and can cause many complications. We don't want to have to do this until her body is stronger. It is very soon post chemo-conditioning to do this to her little body.
Last week, I asked you all to pray for a rash. Wow--that was some effective praying. Her rash is raging now! She looks so uncomfortable. The docs said today that by this point, they would normally be treating a patient with this kind of rash. Right now, we are going to push her a little longer without medication (it would be steroids and cyclosporine--what she was taken off of last week) to see if we can have even more success. Sometimes, you body's best defense and medicine is what it can produce itself.
Thanks to everyone who has been helping get me even fatter lately. Seriously, I have eaten so much its insane, but we really do appreciate all the meals.
The peddler, oh wait, I mean Sam, made some money today with his cart. He sold my mom a package of Elmo fruit snacks for a dollar, then tonight sold a similar pack to someone else for two dollars. Inflation! He's such a character. We've gotten into the routine of saying goodnight to him every night at his door. Andrew and I will go to his door and stand there blowing him kisses and telling him goodnight. One of the best parts of my day.
Andrew had a little mishap with the website today. If you checked it this afternoon, you may have panicked for a second when you saw a strange message instead of Allie's beautiful smile. I know I sure did when I logged on to read the guestbook. When we built this site, we didn't have this much traffic. Andrew switched to a different plan through our hosting site to allow more data transfer without us being charged. What he didn't know was they would shut down our site for up to three days (yikes!) for this to happen. We are still trying to transfer over pictures, so you will not be able to view most pictures until at least tomorrow (besides the ones I am posting tonight). Poor guy. He was just trying to make it better. He works so hard on this site. He has to archive the guestbook comments everyday because the guestbook gets so full that it bogs down the site. If you can't find your comment, look in the most current archive. We do read them all before we archive them. We love your comments.
Have a wonderful night. I'll leave you now so you can go and pray for my daughter! :) Jenny, Andrew, and Allie (YEAH!!!! Less than 1%)
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