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Week 16
MEAL DELIVERY--- If you are interested in bringing a meal for the Scott Family either for lunch or dinner, please e-mail Frances at NanaFrances1@yahoo.com. We thank every person who has brought us a meal thus far.
***UPDATED INFORMATION FOR DONATIONS***
Sunday, Aug. 22nd--Day Thirty-Six Please note the info about meal donations above
11:15pm--I've been out of the room for about three hours while Allie has been asleep. Not sure where I will fit on our bed given that she is laying perpendicular across it. Oh well, she deserves it.
My child is amazing. I know I use that word to describe her all the time. More words in the thesaurus to describe her--astounding, remarkable, wonderful, incredible, marvelous, miraculous, mind-blowing, mind-boggling, staggering, remarkable. Still doesn't do my baby justice. She rocks!
Allie was awake for several solid hours at a time today. She played with toys, looked around, and very rarely cried. She watched two Baby Einstein videos and even smiled for those stinking monkeys! I only say that because I didn't get a smile, Andrew didn't get a smile, the grandparents didn't get a smile--a monkey stuffed animal coming out of a jack in the box toy GOT A SMILE!!! I'm on strike. That is just grossly unfair.
White cells and blasts were the exact same as yesterday without any change. She majorly needed a transfusion being that her platelets were at 2,000, the lowest I've ever seen them. Her liver enzymes are already down a little, and her bilirubin level is perfect. She needed IVIG, a blood boost, that she gets every other Sunday.
Andrew and I had lunch with Dennis and Dana Eisenberg at Houston's today. They first came up to the hospital to visit everyone and see the baby. Since her white cells are so low, her ANC (Absolute Neutrophil Count--measures her amount of fight against infection) is basically at zero. Only grandparents are allowed to visit, with masks on though. We walked Allie, the bag of pee from the catheter, and her IV pole to the window to see Dana and Dennis. Dana couldn't get over how much better Allie looks in comparison to last Tuesday when the two of us laid on the bed with her in between us. I heard her repeat several times, "I just can't believe its the same baby." She is truly my Allie Cat--as Dana said in her post tonight (this time I did read your post before I'm writing, Dana), Allie must have nine lives. I just don't want her to be at life number eight already!!
Baby Fieldon next door is a "rock star," as Annie loves to say. Eleven days post transplant, he is showing signs of engraftment. He has an ANC of 500 and white cells over 1,000! Let me tell you that he is absolutely gorgeous too! I just want to hold him and love on him, but I won't be able to for a long time. Even after he returns home, he will be very immuno-compromised for a while. If all goes well, he may get to go home in the next few weeks. Our hope at this time is that the little man gives up his hatred for all things food and starts eating on his own. His hatred for the bottle runs about as deep as Allie's! I will be so excited for Annie, Jack, Emmaday, and Fieldon to be a family at home again. Though I will miss Annie like crazy! She rocks too! This experience has given me two really special friendships. I am so thankful for Dana and Annie. Annie and I talk at least three or four times a day.
OK, I know there's more info, but my brain is done for the day. No more thinking!
Love, Jenny, Andrew, and our amazing baby Allie
Saturday, Aug. 21st--Day Thirty-Five
9:35pm--A little less fentanyl, a little more awake Allie! What a day it has been. Andrew and I woke up to Allie this morning AWAKE at 8:15 this morning. No smiles (still a little too drugged for that), but she was very alert for over an hour! This from the child who didn't wake up once on Monday. She took a nap, then woke up again! She probably slept more than she was awake today, but it was definitely a start.
Dr. Weinthal came in around 9:30 looking very pleased. Her whites are lowering again to 400, with her blasts (remember--those are bad things--leukemia!) being 24%. Still, they are going down a little each day. Weinthal seems to think it is the gleevec doing something in her body. Doesn't mean he has changed her prognosis, but he is pleased with how she is not just "blasting off" with her leukemia. Even though her platelet level is low, he decided to hold off transfusing until tomorrow. Allie's liver is very inflammed, most likely due to the gleevec (or the GVHD, the leukemia, or TPN!). Of course, Weinthal is concerned, but he doesn't want to stop anything she is on for the time being. They monitor her enzyme levels in her liver everyday to check on the inflammation. Since she was responding well, Dr. Weinthal suggested taking her down just slightly on her fentanyl to see how she handles it. If all goes well, she will go down even more tomorrow in the hopes of having even more awake time. She didn't need a bolus (an extra boost on a button we have control over) once. That's amazing. What a minute, I'm talking about Allie--why am I surprised?
Dana called me this afternoon and I actually answered the phone. She was shocked because I never answer the phone. Usually, I'm on the internet. Then she has to call the nurses station and have them come and tell me she's on the phone. We talked for a little while, discussing various topics. Allie was awake in my arms grabbing for the phone. After hanging up, I went back to focusing my attention on an AWAKE Allie (did I mention yet today that she was awake today?). About a minute or so later, Dana calls back, "Hold on," she says. A little man comes on the phone, "Hi Jenny. Its Sammy. I'm so glad to hear that Allie is doing better today. Bye!" That sweet little boy asked his mommy who she was talking to when she hung up the phone. When Dana answered Jenny, he said, "Oh, did they get bad news about Allie?" She told him no, that Allie was actually feeling a little better and he responded by telling her to call me back because he needed to talk! What a kid.
I left the building for over six hours today. A former student, Lauren Pisarik, had notified me last week about the annual Jasper High School French Club lunch at La Madeleine. Jasper is the school where my students go after they leave me. I go every year to visit with the high school teachers and see former students. Knowing that Allie was doing well, I felt alright with leaving. When I arrived there, I was immediately met by Kaylie Peska, another student. Kaylie burst into tears to see me. After giving my hugging screen ("Any fever, cough, cold in the last week?"), Kaylie and I fell into a huge hug. Other kids got the same screening as we visited and laughed together for an afternoon lunch. I was disappointed that some of my other former students weren't there, but I heard it was due to a schedule conflict with another school group. I wish I had seen them all. I love those kids!
At the end, Lauren Pisarik and I were lingering at the table talking with Lauren's mom Nancy. Being that I was in Plano, I suddenly felt a strong urge to see my beautiful dog, Brandy. I don't know what made me do it, but I impulsively asked Lauren if she wanted to go with me to the Murphy house and take Brandy for a walk. Her mom was ok with it, so Lauren and I drove towards that side of town. On the way, Lauren called Megan Baker, another student, to invite her to join us (we tried a few others, but they didn't answer their phones--cell phones, that is--why do ninth graders have cell phones anyway? Another topic). We picked up Megan and headed straight to the Murphy house. Well, sometimes when you act on impulse, it doesn't always work out. The Murphy's weren't home! Brandy saw me through a window and flipped out. She barked, cried, and stared at us on the other side of the glass. I tried calling them, but got no answer on the cell phone. Now, normal people at this point would opt to go home. What do the three of us do? We sit on their front porch! Yes, we decided to sit and visit on their front porch. Lauren and Megan tried to convince me to just go to their backyard and try to get in, but good etiquette kept me from even entertaining the idea for long. Right as we were about to get up and leave (after twenty minutes of giggling and talking), the youngest of the Murphy clan walked up to the front porch and let us in. They noticed my car as they were heading into their Allie. Little did the expect to see us stalking their front porch! Well, the best part of this story is that I got to walk my girl! I've missed her so much. She looks great. The Murphy's have taken stellar care of her. I doubt she'll want to come home with us when its time!
You would think that after being gone so long I would immediately go right to Allie's room. Well, not the case. Andrew called in the middle of our walk to ask me if I wanted to go to dinner at Luna de Noche. I probably would have said no, but the invitation included being joined by Frances and Jim, my in-laws, and Mary and Bob Albritton. Mary is my mother in law's best friend. She's more than that though. She and Bob are family to us. We were married in their backyard in a beautiful wedding ceremony. Their two gorgeous girls, Abby and Maggie, were our flower girls, or "Flowder Durls" as Abby pronounced it when she was five. Frances and Jim had their wedding reception there, Amie and I both had baby showers there. Major events in our family's lives have happened with the Albritton family. How fitting that we want a "I kicked leukemia's butt (the pg version, I did use a different word for it earlier!)" party when this is over for Allie. I couldn't pass up the dinner invitation! What a delightful meal we had. Great company, great conversation, great food. Andrew drove my car back to the hospital so I could join the group for the walk back. Bob told me that he was so surprised when he walked into Allie's hospital room earlier tonight. He was expecting the worst. Instead, he walked in to see a baby that was sitting up on her own with a sparkle in her eyes. No, she's wasn't smiling, but he distinctly got the impression that she wasn't going anywhere. This child is here to fight! Thank you, Mary and Bob, for being such a lovely part of our evening.
My day couldn't have ended better than the way it did. I arrived to an AWAKE Allie. I rocked with Allie while watching Big Brother 5, Andrew and my guilty pleasure on TV. She didn't smile at all, but she didn't cry and was awake the whole time. When we finally set her down, she fussed a little. We could tell it wasn't a pain cry but more of a tired cry. Within less than a minute of beginning to fuss, she fell asleep.
As I know I have people anxiously and not so patiently refreshing their computer screens waiting for my post, I will end with pictures of my favorite two girls. I needed today to help rejuvenate me. Thank you to everyone who helped bring a smile to my face, especially you my darling sweet Allie!
All my love, Jenny, Andrew, and our AWAKE Allie!
For a smile, check out this site of Allie and all her Sophies! http://www.whiteboard.net/allie/sophie.html
Friday, Aug. 20th--Day Thirty-Four
10:00pm--I'm having an "I hate the hospital" kind of day. Nothing in particular upset me, I just hated being here. I hate that my baby is here, and I hate what is happening in her body. I was not overly kind to most people today, though I hope I wasn't rude either. Tonight, I feel a little better with the help of Mike, Angela and my two favorite boys, Josh and Joey (well, two of my favorite boys because in no way did I forget Sam, Ethan, or baby Fieldon!).
For the medical news on the baby--her white count is down again to 500. This could be a number of things causing this, but we all hope it is because the gleevec is working. She had 30% blasts in her blood, but there were less cells to count. Dr. Weinthal didn't make this a big deal at all. She had a little fever this morning of 100.5, got toradol, and has not had a fever again. Her lungs have rattled a bit, but the breathing treatments from respiratory therapy seemed to be working. Her platelets were only 17,000, but Dr. Weinthal didn't feel like transfusing. However, her lips were so dry that they cracked and bled. With low platelets, any blood is a concern, so they went ahead and did her platelet transfusion today. One of the side effects of gleevec is that it eats up platelets fairly quickly. Her liver is slightly inflamed as well. This could be caused by the TPN, GVHD, gleevec, or leukemia. We don't know. Its all a guessing game.
I've had many questions lately from people, so I thought I would do another Q&A. Let's see if this clarifies some things:
When will they test her for flow and XY? They can't test her until her white blood cell count is higher than 800. Less than that, the machines cannot read the cells to give an accurate number. I don't know when this will be. We do, however, do a normal CBC every morning.
Why isn't Allie having a bone marrow transplant? Allie had a cord blood transplant on July 17th. Bone marrow and cord blood transplants are just different ways of collecting the same thing--stem cells. Essentially, they are both stem cell transplants. With bone marrow, the doctors go directly into the donor's hip to harvest out stem cells. The donor is usually a sibling. Since Allie doesn't have a sibling, it is better to go to cord blood. Yes, there are unrelated bone marrow transplants, but they create a larger risk for infants. The stem cells in cord blood have never been inside a body, thus never having been exposed to things. Allie's match was four out of six matching to her type (not her blood type). They would not do a four out of six bone marrow match because it is much more dangerous. If Allie had a perfect sibling match, that would have been a better route, giving her better chances for success (ie. Sam).
Have you considered St. Judes? We are NOT going anywhere! Our doctors are on the same program as everyone else. Our support system is here. Our nurses are here. These doctors are known in the state and the nation as some of the best in their field. We trust them and know that they are doing everything they can for Allie.
Have you considered herbs for Allie? Herbs have a high toxicity since they are synthetically made. You don't always know exactly what is in them. No, we will not be trying herbs. There is a high potential risk for Allie's body.
Can they do a second transplant? She would have to be at least six months post the first transplant. Dr. Lenarsky has done studies and presentations all over the world to his colleagues about the failure of second transplants less than six months. Her body is still recovering from the heavy chemo cocktail of the first transplant. Lenarsky and Weinthal both said that not only is a second transplant very fatal for Allie, they feel at this time it would be immoral. It would just cause her more pain and suffering. Now, if we get her six months or more post transplant and we need to do another because the leukemia is still there, then we will discuss it again. I can't even think six hours from now most days, so six months from now is an impossibility for me to think about. Too far in the future.
Will Allie get more chemotherapy? Not at this time. Gleevec is her best chance right now. It is a non-toxic targeted therapy. The hope is that it doesn't kill donor cells too. Chemotherapy would wipe out everything in her system, good and bad, thus forcing the need for a second transplant (see question above!)
Does Allie still need platelets? Yes! Platelets only have a shelf life of 5 days. It is more of a process to donate platelets. As I have said before, only people in this area can donate in Allie's name, but don't let that stop you from simply donating in general! There are many patients, not just leukemic ones, that need platelets.
How do I find out about donating blood? You can go to the home page of our site and click on the Carter Blood Care link. They will give you all the information on blood donations you need.
OK, I think that is all I can think of right now. I'm sure there are more questions.
To end with something cute--My friend, Staci Cook, e-mailed me today about her daughter Julianna's visit to our docs. Julianna was thrilled to see "Big Sophie," Allie's giant giraffe, hanging out in the waiting room. There is a picture of Julianna and Big Sophie on her site (click on the hyperlink above). Just makes us see that it really was the right decision to give her a new home at the clinic. I think she will bring many more smiles to cancer kid's faces!
Love to you all, Jenny, Andrew, and our hero Allie
Thursday, Aug. 19th--Day Thirty-Three
9:00pm--Why didn't I go to bed last night until late? Oh yeah, it was because I was chatting online! Thank you, ladies! I felt strangely like a celebrity when I logged on and was "recognized." Someone made a funny comment about it today. I don't have the papparazzi following me around--I have the neterazzi!
You would think that with a baby that is so heavily sedated, I would get a chance to take a nap. For some reason, no nap. Looks like I am going to bed early. I'm tired.
Jacquielynn Floyd wrote yet another well written article about the Scott/Eisenberg clan. I think we have merged into one story. That is why she writes about us at one time. Our story has become intertwined with theirs. If you would like to read the article from last night, please click here. Once again, Jacquielynn honored our families with her words. If you did not read her original article, please check it out. She wrote something that struck me and has stayed with me all day, "Whatever happens to Allie, she has never known a single hour of life without abiding love." Never has there been more true of a statement. The love that we feel for this baby is so strong, nothing will ever break it.
Allie had a few more awake moments than yesterday. I think she was awake three times for thirty or forty minutes each. She is still totally stoned, but she is responding and following things. Her hand/eye coordination is doing fine. She reached out for Mom's Livestrong bracelet and brought it immediately to her mouth. She reaches out into the air for the objects she is most likely hallucinating. For all she knows, there may still be a five foot tall giraffe in the room!
The blood in her urine is gone (and yes, she is on a foley catheter) , affirming the low platelet theory. Andrew joked that it would be ok if there was blood in her urine so long as they were all blasts. We joked with Dr. Weinthal about why he couldn't just give her a pill that would just make her pee out the leukemia! Now, that would be a great drug!
Her white blood cell count is 700. I don't know exactly what the reason is for the drop. Could be a number of things. Her blast count is about the same, maybe slightly lower, but the difference is miniscule. Dr. Weinthal says that one good thing is that she isn't "blasting off" with her leukemia cells. She didn't need any transfusions today, but I'm predicting a platelet transfusion for tomorrow. Her rash comes and goes, but we think there is still some GVHD in her body. That's good. We need those donor cells to kick leukemia's butt!
Her lungs have been rattling all day with more junk. The problem is that she is so sedated that she is unable to completely cough out what is in her lungs. She is only using the upper half of her lungs. Cindy told me this afternoon that she was very concerned with this new development. It could mean that she is turning a dangerous corner.
Gleevec has been given every day this week. I think we will continue to give it everyday for a while. I don't know how long. One thing to remember is that it is not a chemo drug. It is one that targets a specific cell. My mom called the makers of gleevec too see if they knew of cases of gleevec with AML patients (it is designed for CML patients). To their knowledge, it has been used on AML patients, but never on an infant. Yeah for our guinea pig! Taking the gleevec is an interesting event in my day. Cindy and I syringe pedialyte first without the medication to help wet her throat. Not easy when she won't swallow because she is sedated! Today, we were squeezing her cheeks, tickling her feet, calling out to her, blowing on her face, etc, to get her to respond a little. Finally, she began coughing . This achieved two things--she swallowed the drink and the medicine and she broke up her secretions in her lungs! Of course, the junk returned about three hours later, but this did offer her some relief.
Everyone's favorite doctor, Sam Eisenberg, came up for a social visit this morning after his clinic visit. I was so excited to hear that he was out in the waiting room. He gave me a big bear hug and showed me his stickers. His counts were fantastic today. This kid is incredible. He goes in for an infusion of IVIG (a blood boost--Allie gets it every two weeks) on Monday. Barring all complications, he may never need to have it again. His platelet count is holding on its own, with his marrow producing new healthy white, red, and platelet cells! I couldn't believe it when Dana said his platelet count was over 180,000!! What a miracle kid. I know I've said it before, but I love this child.
Light the Night Teams are starting up all around the country. If you are in another state and are interested in participating, you can click on the link on our front page to find a walk in your area. I know that most teams, besides the Plano Oct. 23rd team, are called "Allie's Angels." People are also purchasing t-shirts, bumper stickers, etc at www.cafepress.com/alliesangels. Our team, 12th South Angels, will be walking here in Plano in Oct. Our original goal for money raised was $5,000, but we think we need to up that goal to be at least $10,000 or more (Dana suggested $25,000!). We've had quite a number of donations, as well as people who are walking work to raise money. Dana and her friends wrote a letter and sent them to their neighbors about donations. If you are a participant, set your own personal goal of how much you want to raise. I think the entry cost is only $25, but $100 will get you a t-shirt. Anything for a free t-shirt, right? Speaking of t-shirts, Dana's clan has taken over the t-shirts for our team, so I will defer all information to her.
I just had to stop and play with my AWAKE daughter. She is making raspberries and "talking" at us right now. Again, and this is a baby I could take home on hospice to die?? I don't think so!
Dr. Weinthal said to us today that we have become heroes in our own way as Allie's parents. Wish we were just ordinary people. No, the real heroes are Allie, Sammy, Fieldon, Jordan, Ted, our nurses and our doctors and everyone else we have met up here.
All our love to our precious hereos, Jenny, Andrew, and a very stoned Allie
Wednesday, Aug. 18th--Day Thirty-Two
10:35pm--Fever is gone, but we now have blood in her urine. Karen and Anne both told us that it is due to low platelets. She is receiving a platelet transfusion right now. Respiratory is supposed to come to do a treatment to help clear out the junk in Allie's lungs. She is getting anti-itch medicine every three hours now to help with her itching. Both her versed and fentanyl drips have been increased to help her from getting too agitated. Her other organs look great, with both her liver and spleen feeling soft (it hardens as the leukemia gets worse). She needed a red cell transfusion this afternoon.
OK, that's the nitty gritty details of Allie. Now, let me move on to her in other respects. She was awake twice today for about thirty minutes each time. Frances had told me that she expected to her eyes to look lifeless. There was still a little sparkle to her eyes. Something in her look today told us that she definitely wants to be here with us. The feeling is mutual! She still can't open her left eye completely, but it is much less swollen. She looked around and grabbed for toys. She even tried to eat her oxygen blow by tube! She would look at us, but she wouldn't smile. Basically, the child is so stoned that she doesn't respond too much. That is what you can see in her eyes. She is so sedated that nothing is agitated her. I would rather have that though, then have her be in any kind of pain. We all sang to her, made faces at her, and gave her Sophie the giraffe to play with. It wasn't much, but it was more than yesterday. It was another chance to look her in the eyes, and I will never turn that down.
Around 11:30 this morning, Anne came in saying that Dana was on the phone at the nurse's station wanting to invite me to lunch. Andrew, Frances, and my mom Sharon all said go. I readily accepted her invitation to get out of the building. When the time came for me to head downstairs, I stopped by Annie and Fieldon's room to ask Annie to join us. My sweet mother in law watched Fieldon while my sweet mother helped Andrew with Allie (do we have an awesome support system, or what?). Dana was delighted to see both of us for the lunch date. It was exactly what we needed. The mood was somber at a few points, but for the most part, we kept conversation light. We decided to have a weekly lunch together. I love that idea. I enjoy them immensely.
Baby Fieldon is now seven days post transplant and doing very well. Annie and Jack went through a very difficult time before Fieldon was diagnosed at three months. I think it is the uncertainty and the fear of the unknown that is the hardest. Fieldon is one of the sweetest children. He rarely cries, except for the case when his paci falls out of his mouth. In that case--watch out because the boy is mad! He is beautiful. What a perfect future boyfriend for Allie! Annie has finally (Dana and I have been bugging her for weeks about it) set up their website. Andrew helped her out today by loading the pictures of Fieldon and Emmaday on to the site. Please visit our friends at www.caringbridge.org/tx/ormondfamily. What a wonderful family they are.
After much contemplation, Andrew and I decided not to keep the five foot tall giraffe, aka "Big Sophie," in our room. Instead, we opted to donate it to our doctor's clinic in building D for their waiting room. We want more kids than just Allie to enjoy it. We plan on having a tag or plaque made that says it is given in Allie's honor. Our hope is that Allie will visit Big Sophie on clinic visits in the future once we go home from the hospital (my optimism shining through here). Andrew, Frances, and I carried the giraffe to the clinic after I got back from lunch (imagine the looks we got from people!). The ladies at the clinic were excited to see it as was Dr. Lenarsky. He and Dr. Weinthal told us that they felt honored to provide a home for our giraffe. In the waiting room is an adorable playroom with a giant oversized couch. Well, what oversized couch is complete without an oversized giraffe? It fits perfectly! Now, many children with cancer can enjoy this beautiful gift from Poshtots.com, not just our child with cancer.
We had several wonderful visitors this evening. As I mentioned above, our support system is tremendous. Tonight, we had Andrew's Aunt Peggy and cousin Susan. They visited for about an hour or so with us. Peggy is one of the kindest people I've ever met. I always love to see her. My best friend Debbie came shortly after and held Allie for over an hour. We made Deb wear a protective gown and a mask just in case since she does have two children. We can't take any chances right now. While Debbie was here, we had Pat Aptaker, the president of my mother's company and someone I highly respect, and Karen and Gary Anderson visit. Karen Anderson was my high school French teacher. She is the reason I followed that career path. Since diagnosis, they have visited us several times. Every time we see them is special.
Our walk last night gave us the chance to speak openly about our feelings. I am so glad that the two of us are on the same page about Allie's treatment. Allie doesn't qualify for clinical trials or new drugs because she is too soon post transplant. Chemos or herbs have high toxicity that would ravage her body even worse. We both agree that we don't want to do that to her given that there is not much hope for results. We don't want to continue to make our baby needlessly suffer. Don't get me wrong, we want nothing more than to have her with us for many, many years, but we do not want to cause her more pain. We are coming to peace with the fact that this may not be her fate. We have said it before, but maybe she is just too perfect for this world. I hope for a flaw in her perfection that allows her to stay here with us!
Dr. Weinthal said this morning that he was pleased with Allie's heartrate. He commented, "She has a good heart." Andrew replied with, "She has a DAMN GOOD heart!" That she does.
Our love to our fantastic support system, Jenny, Andrew, and Allie
Tuesday, Aug. 17th--Day Thirty-One Post Transplant Allie's 8 month birthday 8:30pm--8 months ago, right about this time, I gave birth to a beautiful baby girl. Allie came in to my world with such love and beauty. I've been thinking of her life all day. Debbie used to call her the "anti-birth control baby," the type of baby that would make you think, "hey, I could have a few more of those!" She is one of the most perfect babies I've ever seen. These past eight months have been some of the happiest of my life. When I look at her, it takes my breath away. Happy 8 month birthday, my darling. Your mama and daddy love you so much.
Allie has not been awake today. We have kept her sedated as best as possible. She opened her eyes once this afternoon and briefly looked at me. I was just glad that I was there to see those blue eyes. Those eyes shine, even through cancer. When she cries, it is a cry of pain or agony. You can just hear it. She whimpers in her sleep like a puppy dog. Agonizing to hear. This morning was rough. We cried most of the morning. I landed myself in a low spot. I wouldn't look at anyone, wouldn't speak, just stared into open space and cried periodically.
Just then, Dana came in to see me. She took time out of being with her newly united family to come up to the hospital to be with us. She and I laid down on the bed on either side of the baby in an Allie sandwich. I can't say enough things about this woman. She is kind, generous, funny (I laugh every time I'm in her presence), wise, brave, and strong. Here is a woman who has battled her own cancer and watched a child fight another type of cancer within two years of each other . Now, she befriends me and tries to bring me comfort. I've said it before, but the pull I feel towards her is so strong. I will be friends with this woman and her family for many years to come. Thank you, Dana for coming up to see us today. Please know how much that meant to Andrew, me, and the moms. We all think nothing but good things about you! :)
Dr. Weinthal returned this afternoon with more news from yesterday's test. He is perplexed, to say the least. With a lower white blood cell count, they could only count ninety cells for the XY chromosome test. As you remember, last week, she had 94% Allie and 6% donor. Today, she has 79% Allie and 21% donor! We are all in a bit of shock because we, including Dr. Weinthal, expected the donor cells to be gone. They ran another test to see how many of the cells had this specific chromosome (T something) attached to it. This particular chromosome is very indicative of Allie's leukemia. Two weeks ago, 99% of her cells had this chromosome. Today's results came back with 47% of the cells tested had the chromosome and 53% of the cells did not.
We don't know what to make of this new information. The fact remains that she has leukemia in her cells. Graft vs. Host Disease is still happening in her body. If the donor lymphocytes can, they may be able to fight the leukemia cells. However, Dr. Weinthal says that he doubts this will happen. Her leukemia is so strong and persistent. It doesn't give good cells much of a chance. She started the new medicine gleevec today. It only comes in pill form. It had to be crushed up and put with some liquid. We gave her some pedialyte first through a syringe. She took it so well. Not a drop of the medicine was spit out. We have been told that we should be able to tell if her body is responding to this medication in about a week. Of course, we hope that this works, but we have been told to get out hopes up. Hard to think about.
A few other issues that are going with Allison--her belly is very distented. Her bladder is full and she has not peed at all today. She had two diapers. She isn't dehydrated. Karen just explained that it could be that she has a lazy bladder, caused by the narcotics. She is calling the doc on call right now to find out about having a foley catheter inserted in her. Any time you introduce something like that into a patient, you risk infection. Yes, we are nervous about that. Her blood counts showed a higher number of blasts in her blood today. She is continually running a fever. Weinthal explained that while it could be the GVHD, it is most likely the leukemia. That was the first symptom she showed in April, a fever that wouldn't go away. The steroids keep her fever lower than what it would be without, but she still gets as high as 102. We give her toradol, it goes down for a few hours than raises right back up again.
Scared isn't the word to describe our fear. We don't want to live our life without our baby. Watching her deteriorate is excruciating for us. For now, we are hanging on to the hope that she doesn't follow the books and could very well surprise the heck out of us.
Andrew and I are going to try to take a walk outside now. We haven't left this floor in three days. I usually only leave the room once a day. We need to get out and walk and talk. We need to be together just the two of us to process this information. We have held each other and cried all throughout the day. Must be why you have two parents. One has the chance to be the weak one while the other holds it together.
Thank your thoughts and prayers for Allie. Please keep our birthday girl in your thoughts.
All our love, Jenny, Andrew, and our 8 month old baby Allie
Monday, Aug. 16th--Day Thirty
10:50pm--As I sat down to type tonight, Andrew told me "speak from your heart, as you always do." Here goes...
The bad scenario became a reality for us this afternoon. Allie's flow results came back with 50% of the 900 white blood cells being leukemia. As Dr. Lenarsky suspected, Allie's leukemia is on the rise, and we are moving in to scary territory.
We knew this morning from seeing her normal CBC that something wasn't right. We discussed our options with Dr. Lenarsky this morning, giving us all afternoon to make some decisions. He gave us three options:
1) Not treat her with any further medications for the AML, but simply keep her comfortable. Allow her to pass without further inflicting more pain or suffering on her.
2) Try Myelotarg to try to kill her myeloid cells. The problem with Myelotarg is that it is extremely toxic and could kill her faster. Her body would most likely be unable to handle it.
3) Try an experimental drug called gleevec. This drug has been out for about five years treating patients with CML (Chronic Myelogenous Leukemia-not what Allie has), but it has never been used on someone as little as Allie. It is in pill form, so it will have to be crushed up and mixed in a syrup to give to her. If they can't give it that way, they would have to place a tube down her nose. There is no real proof that it would work, but no evidence showing it wouldn't either.
Both options 2 and 3 would be "shots in the dark." They don't think they will work. The reality is that there is a strong possibility that Allie will die. My god, did I just write those words?
So, Andrew and I had some serious decision-making to do. We've decided to go with option 3, which starts first thing in the morning. The docs say we will be able to tell if there is any kind of improvement in a little over a week. We can also decide at that time to stop treatment if we feel it is not doing any good. We don't want to prolong suffering for our girl or needlessly make her worse. Then again, we are afraid of the what if. What if this could work and we don't try? We don't want that guilt. We aren't ready to throw in the towel completely even though we realize that we don't have good chances.
Andrew and I held each other and cried at various times throughout the day. I was holding Allie in my arms with Andrew at my side. She was blowing raspberries at us (she was in a fairly decent mood today--looks better--I'll come back to that). Andrew broke down and buried his head on my chest. I reached out and stroked his hair as a way to comfort him. Our angel baby reached out as well and stroked her daddy's hair. It was as if she was trying to comfort him. What an amazing child. How blessed am I to be her mother? I would take these last 8 months of being her mother over nothing and do it all over again anytime.
"Project Be Happy" has been implemented in this room. Breakdowns are acceptable (I've had many today), but they need to happen out of Allie's sight. While in her presence, we need to put up a happier front. Because we are happy in her presence. She lights up our hearts and our lives. We need her to feel that. The two of us made a pact tonight that we would step away if we need to cry. Even if we just go to the bathroom. As soon as we decided that, we both began to bawl with Allie asleep in my arms. Andrew announced, "OK, starting now!"
Both Dr. Lenarsky and Dr. Weinthal came in this afternoon around 5 to give us the final results from flow. However, we knew in our hearts before they stepped in the room. Sometimes I think that Allie never really had a chance from the beginning. She has always had a shitty deal. I just didn't want to admit it. I remember when we first started getting friendlier with the other parents up here. Someone warned me to be careful about getting too close because inevitably, someone will not do as well. I was told that if there are four children up here, at least one out of the four would die. Naively, I thought that wouldn't be the case for our kids. ALL of them would survive and we would wow them all. Now, out of the four kids that have been here with us, mine is the one. I never thought that would happen. Then again, I never wanted any of the other ones to be "the one" either. I want nothing more than to go to a park or someone's house and watch Allie, Fieldon, Emma Day, Sammy, and Ethan playing together. I want it so bad that I can't get that image out of my head.
Other images and thoughts have been in my head. Though I hate to admit it, I've thought about the logistics of things since all this has happened. Andrew and I even discussed locations of resting places. I can't tell you how that tore us up inside. The thought of losing our girl is ripping me to pieces. How can I live my life without her? We have discussed the idea of selling our home. We don't want to live there without her. We bought that house almost two years ago this Sept. We chose it not just for the house itself. It has a big backyard--big enough to have room for the dog to play but still let our children have a playset. There is a brand new school within walking distance, four parks, and many young families. We knew it was the place for us to start a family. We picked out the room destined to be the nursery long before we found out we were pregnant. Now, every room in that house has remnants of Allie. Memories of Allie everywhere. How could we live there without her? I honestly don't think that is an option for us. My hearts desire would be to stay in that house for many years to come. That would mean that we had our Allie with us.
Sam left this morning while we were in with Dr. Lenarsky. I didn't get the chance to formally say goodbye, but that doesn't matter. Sam and Dana know how we feel about them without having to say it that way. Sam and I did get a chance this morning to visit at the nurse's station. He was being grumpy and wouldn't speak to anyone. I sat down in a chair fully expecting him to ignore me as well. As soon as I sat down, I had a beautiful three year old climbing into my lap. He stayed with me and we snuggled for a while. How is it that these children know how to comfort just when it is needed?
There is so much more in my head right now that I want to write. Most importantly, I want to write about my love for this child. My baby. My love. I couldn't ask for a more perfect child. She is the baby of my dreams. Andrew says that maybe she is just too perfect for this world. Maybe she is just too pure and too good for all the bad that is in the world. I don't know. All I know is that I want her here with us for a long time.
Thank you all for your love and devotion to our family. We are so thankful for the many gifts for Allie. At this time, we ask that you not send us toys for Allie. A friend of the family said that instead of buying all the giraffe things she sees, as she is often tempted to do, she simply says a prayer for Allie each time. I don't know if our prayers are being heard, but I don't discourage anyone from praying. I'm grasping for straws, hanging on to any last ray of hope that there could possibly be out there.
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