|
|
|
|
     |
|||||||||
 |
 |
||||||||
|
|
Week 7 Sunday, June 20th--Andrew's first Father's Day 9:00pm--Today has been a bit of a roller coaster. The last two months have been a roller coaster--what was I expecting? Allie isn't feeling well, so its been a bit rough. She seems to be very agitated. We have been giving her fentanyl for pain medication, which she has not needed since about Wednesday. She has been in and out of sleep. When she wakes, she isn't too happy. She is drooling like crazy and she does have a really red spot on her bottom gum. I don't know if she is teething or if the mucusitis is causing the drool. She has two huge mouth sores too. The thing about the mouth sores is that they go all through her GI track. She probably has several more that we just can't see. Her head feels like it is burning up, but then her temperature is only 98.7. I would not be surprised if doesn't have a fever by the end of the night. The day didn't start out bad. Andrew woke me up around 8:30. I rolled over to a sleeping Brandy lying (is it laying or lying? My grammar is failing me right now) where Andrew sleeps. She even groaned at us for talking and disturbing her! We got ready quickly (I have to shower here in the room before I hold the baby, so I didn't worry about getting ready that much) and headed out the door. Gosh, was this really only this morning? Feels like a few days ago. We called my mom on the way and she said that Allie had a good night last night. She spent half the night in her crib and then moved into the bed with Grandma around 4am. Since she was doing well, we decided to do something we never do--skip Dr. Lenarsky's visit and let my mom be here instead. One of us is always there for it, but we knew it would be much of the same. Nothing has changed this week. So we went to La Madeleine for breakfast instead. If you haven't had breakfast there, its awesome. The best bacon! As we expected, the report was the same as yesterday. He continues to comment on how surprised he is that she hasn't gotten a fever yet. Oh, don't jinx us Lenarsky!! We had a lazy morning with Allie and my mom. Andrew played his game boy, Mom fiddled on the computer, and I alternated between reading and napping with Allie. Frances, Andrew's mom, showed up with lunch and a few Father's Day gifts for Andrew. She also bought Allison an adorable new baby blue polo dress and a beautiful rabbit figurine. The grandmas laughed and giggled at Allie as she watched Baby Einstein. I have to say, that has been my life saver. Mom had bought her an entire collection of Baby Einstein DVDs (I think she has like ten or eleven) after she saw how much Allie liked the one I had gotten. Before this happened, I would let Allie watch one in a day or one every other day. Now? She watches one in the morning, afternoon, and evening. That is how I have breakfast, lunch, and dinner. Who cares? We live in a hospital. Under normal circumstances, no, I wouldn't want her to watch so much. But nothing about our circumstance is normal. Nothing. Can you tell that I'm in a blah mood right now? I just hate that Allie is having a bad day. And on Father's Day to boot! When I first got pregnant, I started thinking about how I wanted to give him a special Father's Day. I thought about it all spring too. I wanted to do something special so he would remember his first one. We'll both remember our first Mother's/Father's Day since they were both spent here on good ole 12th South. I didn't even get him a gift. I haven't really been out much and when I have, there hasn't been time. He, of course, profusely says that it doesn't matter, but it matters to me. I didn't want it to be this way. Not with her being so unhappy today. We've had a great, happy week--why did it have to be TODAY that she doesn't feel well? Please pray hard tonight that what Allie is experiencing won't manifest itself to be something worse like an infection. Here are a few other specific prayers for this upcoming week: 1) Allie to begin eating again. If she shows progress in this department, gets off some meds, we MAY (not definite) get to be home over the fourth of July weekend before her biopsy. 2) Sam's return to 12th floor to be smooth. He is only supposed to be here for another two day bit of Ara-C and then back home until its time for transplant sometime mid to end of July. Pray that everything goes well and he gets to be home with his family during this time. We don't know how long he will have to be in after transplant or how bad he will feel, so he needs good days up until then. 3) Keep infection out of Allie's body! Pray its just a tooth! 4) Pray for Jordan and his family. Jordan is sullen and quiet, not feeling well at all. Our nurse today, Anne, was also Jordan's nurse. She said he pulled the computer out a few times and fiddled around. If you still want to do more for us, I have a favor to ask of you---Donate to Jordan's family. Their last name is Morgan. You can send a check to Andrew's work 6200 LBJ Freeway Suite 105 Dallas, TX 75240. As I said before, his family has had NO support or financial aid. You have been so kind to our family. Jordan's family needs the help! If you have anything, even just $10, it would mean a lot to me for you to donate. I don't feel right divulging personal information about their family, but I will say that they have had a rough time. Jordan deserves this so much. Can you believe that Andrew will be setting up a week 8 for my journal? Wow. OK, Allie is stirring, and it doesn't sound happy, so I'm signing off. Love to my wonderful husband and the best father I know (and to everyone else reading this tonight), Jenny
Saturday, June 19th-- 10:15pm--I'm sitting here at my computer desk with a sweet dog at my feet. Almost feels normal. If I close my eyes, I can almost trick myself into believe that Allie is just asleep in the other room with the monitor on and nothing else is going on. Being home feels nice. I'm thoroughly exhausted after a long day, but I wanted to take the time to do my post first. Last night, Allie cried out like she was ready for bed. The normal rubbing of the eyes, burying her head into my chest, and playing with her hands gave me the indication that she was about to crash. So, I put her in her crib. Well, I forgot that Child Life had brought her in a new mobil--a toy! She was wired! I went to wash my face in the bathroom. When I came out, she had scooted to the bottom of her crib and was playing with her legs straight up in the air and squealing with delight. After another hour of playing, she finally laid down in my bed and fell straight to sleep. She slept until 8:45 this morning when she awoke with a smile. I know not all mornings are going to be this good, so I relish these times. Andrew stayed with her all day while I packed up the classroom. I can't believe how long it took! We had a crew of about 10 kids--some who left early and some who remained the whole time) my friend Nancy, and me all working our tails off for a solid five hours. I have so much stuff! The neat part of doing that was going through the memories. I had students from the last three years and the last three PAL classes. I was able to find something and say, "Hey, remember this?" and one or more kids would laugh and we would share a story with the others. Usually, we continued to work. So many funny memories in that classroom. I called the soon to be new teacher, Laurie Ferguson, and invited her to come to the room if she would like. She came up and I showed her some projects, talked to her about some policies, and gave her my lesson plan book from last year. Nancy told me that was brave of me. She was surprised I gave up my lesson plan book--after all, that is all my hard work. When I started working at that school, there was nothing. I created all the tests, quizzes, etc for the classes. I would have loved for someone to help me out like that. I went to Patti Harrington, French teacher at another middle school in Plano, all the time for extra paperwork. She gave me great stuff. I only lost it a few times. While cleaning out my desk with Megan Baker, I found my ID tag. I stood and stared at it for a few seconds then turned it over and placed it back in the drawer. A few tears began to stream down my face. When Lauren Pisarik was leaving, she presented me with a gift. She was one of the French students that went on the trip this summer. If you remember, Andrew, Allie and I were planning on going on that trip with the kids. We even have her passport. Lauren had made a sign that says "We love you, Mrs. Scott" and the students brought it with them throughout France. At various locations, they took a large group picture (example, in front of the Eiffel Tower) while holding the sign. Once home, she put those pictures on the back of the poster decoratively with the names of all the students on the trip. That got me, but something else she gave me got me even more. It was a picture of a lit candle, very simple. On the back, it said that she and Megan Murray had lit the candle at Notre Dame Cathedral as a prayer for Allie. How beautiful. And this coming from two 14 year old girls. I was speechless ( and trust me, that rarely happens). At the end, I had a few lingering students. I avoided hugging two girls, Kaylie Peska and Quinn McKee, until the end because I knew I would really lose it. Oh yeah, I did. I finally peeled myself away from Kaylie and got in the car. That is when the sobbing starting. Probably fairly dangerous, but I sobbed (and I mean snot running down, big sounds SOBBED) all the way home. Its over. Final. I do not work at Rice Middle School anymore. I cried for the students I have taught in the past four years. I never thought I would be one that would leave the profession after such a short time teaching. I definitely want to go back one day. I have to say thank you very quickly to all that helped today. You made it better for me. Here's my name list of thank yous--Nancy Nixon, AJ Sartor, Chad Barker, Casey Barker, Chelsea Logan, Caitlin Elledge, Leslie Hansen, Kaylie Peska, Quinn McKee, Megan Baker, and Lauren Pisarik. Did I forget someone? I hope not, but my brain is fried by now. I think I could have asked so many other kids, but this is who I was in touch with. Several found out from Sean Murphy, who was watching my dog, but he was camping (with my dog!) Thank you guys so much for your help today. I know it was a lot of work, but you really made a difference. Speaking of the Murphys, Andrew and I had a wonderful dinner at the Murphy house tonight when we went to pick up Brandy. They are the kind of family I want to be when we grow up. Such a strong family unit. They are some of the kindest people, including all three boys, I have ever encountered. We sat outside with the kids and the dogs around the pool before dinner talking. When we came in the house, Sean gave us the grand tour. Then it was time for dinner. Wouldn't you know that Brandy is right sprawled out at our feet. Made me think of our many dinners at our house, Mike and Angela. Except no one was yelling, "Jenny call Brandy!" as Josh usually does. After we finished eating, we sat in their dining room talking and laughing until about 9:15. We thanked them, but probably not enough because they have done SO much for us, and then headed out with Brandy. Brandy is a great car rider. Except for the fact that she hasn't seen us in two weeks. So, she rode in my lap! You know, that was fine was she was a six week old puppy the first day we got her, but when she is over 65 pounds! Wasn't quite as fun. Was it ever cute though. At every intersection, I saw people in cars next to us smiling and laughing at Brandy. So now I leave you to get a full nights sleep in my own bed. I can turn over from side to side all night if I want! In the hospital, I can only sleep on my left with my right side smushed up against the wall. Not as comfortable. Allie is doing well. She had a great day with some much needed daddy/daughter time. She just lights up even brighter when he is around. Nothing was new medically, except for the need for a platelet transfusion today. Apparently your prayers for Allie to continue to have great days are working. Can you say a few more? We would really appreciate it. Love, Jenny
Friday, June 18th-- 6:45pm--Today, Andrew and I got the chance to do something neat. If you read yesterday's post, you know that Jordan (11yr old with AML) borrowed my laptop yesterday. After discussing it with Andrew last night, we decided we would like to do something for Jordan and his mom Amy. So Andrew went to Fry's today and bought Jordan a new laptop, using some of our donation money. People have been so generous to us. We have had many donations, gift cards, meals, etc. It still amazes me to see the generosity towards our family. I look at Amy's situation and think it is so hard. No one has helped them much. Just a neighbor mowed their lawn a few times, but not much else. It doesn't feel right to have such generosity poured on us without giving to someone else. It would feel selfish. Yes, we are keeping most things for us because we know we are going to hit on hard times and need the money, but we know that we can share some of it too. Wouldn't feel right in my heart to know that I have a resource to help someone else and I didn't use it. While at work, Andrew loaded the laptop with some software and set it up for Jordan. When he got here this afternoon, I was jumping to get it to them. I couldn't wait! Andrew also had a laptop backpack for him that someone he works with gave to him. So, I went and knocked on their door. Previously today, I had given Amy a Chili's giftcard. She was so excited because that meant she could take her other son, Justin, out for dinner tonight. What I didn't realize was that the card I gave her had been used! I felt so bad. Luckily, I found another Chili's card to give her that was unused. When Amy answered the door, I started out by giving her the new giftcard then I asked to meet Jordan. Jordan was sleeping, so I told her what I had bought. You could just she the appreciation in her eyes. Jordan woke up and I was allowed to come in. He didn't talk much to me, but he kept his eyes on the computer. He was feeling pretty lousy (not having an immune system makes you so tired and just feeling cruddy). Just as I was close to leaving, he quietly told me thank you and even gave me a little smile. Andrew is going to go there when Jordan is ready to load some games and show him how to get on the internet from the room. I'm so glad we decided to do that. Last night, Andrew knew something was nagging me as I was talking about Jordan again. He immediately said, "Honey, what do you want to do about it?" I didn't know for sure, but I knew I wanted to do something. It was actually his idea for the laptop. I was so excited I could barely contain myself all day! Just feels good to help them. And you know it didn't start with us. It started with the Eisenbergs doing something for us. They raised that money for us to have the photos taken by Katy Tartakoff (boy are they gorgeous photos--hard to choose!). As parents of sick children, we have to kind of look out for each other. On the Allie front, she is doing very well today. Right now she is playing on the bed under a thing of toys that dances and plays music. Oh wait, now she's asleep. She woke up early today, around 7:45. That's early for her. Even before she got sick, she has always liked to nap in the morning until about ten. When we were working, we woke her up at 7, and she was back asleep by 7:45 on the way to Angela's house and slept until 10. When did doesn't get to sleep like that, she's a bear. Some people here have woken her up too early, and it was not a pretty site. Trust me, this kid needs her beauty sleep. Jacob, her physical therapist, came in today around 2 and played with her until 2:40. He is working on helping her keep her strength. Today, they worked on sitting up tall, trying to put some weight on her legs, and reaching for toys. She was worn out by the time in left. But no time for rest because in came Linda, her child life therapist. They did tummy time and sang songs together until Allie finally lost it. I was showering and could hear Allie crying. By the time I got out, Linda had her comforted in the rocking chair, fast asleep. Her white cells were at 500 today. No transfusions were needed. Dr. Lenarsky tickled her a bit and talked just briefly to me about her. He said he is very surprised that she has not gotten a fever yet. If she does get one, it is considered normal and will be treated quickly. That's why it is important for us to be here in the hospital. When he left, he said, "Sorry, Allie, I could play with you all day, but I have to take care of people that are actually sick! You just don't look sick to me." Well, as if on cue, Allie threw up for him. Just a little to clear her throat, got some medicine, and has felt fine the rest of the day. Tomorrow is the big cleaning and moving out day for my classroom. Several students are meeting me up at the school around 10:30am and we will pack it all up. Please pray for my strength to handle it. It will be an emotional day. I'm starting to choke up just thinking about it. Afterwards, I will come back to the hospital for a while, and then my mom is spending the night with the baby. Andrew and I are going first to go pick up Brandy from the Murphy house and go together home. It feels weird at the house without Allison, but it would make it worse for me without Brandy. We are going to ask the neighbors again if they could stop in and let Brandy out at night (sorry, Jennifer, I am planning on e-mailing you about this!). I'm looking forward to a night away from this hospital. It does get to you after a while. Speaking of the floor, we only have three patients up here right now!! Allie, Jordan, and Ted Wren, who returned after only three days at home due to complications. Everyone else has checked out. Sam returns on Monday, and I will be happy to see Dana and Sammy (with Sam rummaging through the nurse's station). And then there were three..... Night, Jenny
Thursday, June 17th--Allie is sixth months old today! 8:30pm--Its quiet right now, just me and Allie. She is relaxing after having thrown up a bit watching her daily dose of Baby Einstein. Lourdes, her nurse tonight, just gave her some anthemet for her nausea. I think the big problem is the mucusitis, as I have mentioned before. She gets so much built up in her throat that she gags and then vomits. Its never very much, and then she smiles. Doesn't even seem to bother her very much at all. It would bother me, but not her. Dr. Lenarsky didn't have anything new. Right now, his daily check ups are just to make sure she is stable, check her counts to see if she needs any transfusions, and then answer any of my questions. Her ANC (Absolute Neutrophil Count, or the number that indicates how much "fight" she has against infection) is zero. Her white cells are at 600, and she did not need red or platelet transfusions today since she had them yesterday. I expect for her to have one or the other here in the next few days. Her body doesn't produce new cells right now, so they get depleted rapidly. Lenarsky and I talked a bit about her transplant. Once we find out she is in remission, we will sit down and have the "transplant talk." It is supposed to be a two hour discussion. I have had a few questions about the cord blood transplant, so let me try to explain it to you now. The purpose of chemotherapy is to kill the leukemia cells. It also kills off all the good cells. The reason why we go about a month between treatments is to allow the body enough time to begin to make new cells. The hope--what didn't happen last time--is that the cells are good cells, not leukemia blasts. If she is in remission at the time of the next bone marrow biopsy in three weeks (remember, remission is less than 5% of blasts in her cells), then we will discuss her transplant. The week before a transplant, the patient receives an intense round of chemo and radiation (the jury is still out on the radiation for Allie) to kill off anything that may be lingering in the body. At this point, the body will not be able to make new cells on its on, as it did in the previous rounds. Here's the analogy that makes sense to me--if you have a garden that is overrun with weeds, you use poison to kill it. But the poison kills everything, including anything that was good, so that all you are left with is dirt. The dirt alone is not going to produce any new grass for example. So, you have to plant seeds. That is the transplant. The transplant is the seeds for Allie's body. Usually, the seeds will grow new healthy plants or grass. However, there are times where seeds just stay in the dirt and do nothing. Its up to the dirt to have it grow. Its up to Allie's body whether or not her body will begin to use the new stem cells from the cord blood transplant to generate new cells or not. Our little girl is sixth months old today. I can't believe it! It seems like just the other day that we brought her home from the hospital. She was such a beautiful newborn. She never had any of the things often typical for newborns, such as cradle cap, cone head, baby acne, etc. She was perfect from the get go. I just can't believe that this time last year, we didn't even know yet we were having a girl. I was just puking my way through teaching summer school. I had a mom tell me that one day her third grade son who was in my summer school class came home and said, "You know mom, sometimes when women are pregnant, they just don't feel good." I was looking rough. You would have thought I would have lost weight. Nope, by the end, I was one of those pregnant women that people commented about how HUGE I was. My favorite comment? "I didn't think it was possible for you to get any bigger, but WOW, you did!" Makes you feel good. I got a chance to visit quite a bit with Amy, Jordan's mom. Financially, they are in a tough spot. She made mention of wishing Jordan had a computer, but that she had put a laptop on layaway. She didn't know how long it would be before she could get it. I immediately came in here and got my computer to share with him. If I have the resource, why wouldn't I share? They are such a nice family. She even showed him Allie's website online. I told her that anytime she needed it, they are welcome to borrow our computer. Its important for the parents to stick together and help each other out during these times. I think I might finish my post here and walk to Jordan's room and see if he would like to use it tonight. Here are a few pictures of the Birthday Girl in her hot pink dress. Please pray for her tonight. The immediate need is for her to get this gagging under control and to not get an infection. The prayer for the upcoming future is for her bone marrow biopsy sometime the week of July 5th. I am terrified about the results. We need so badly for it to be good. We need your prayers. Thanks and love to you all, Jenny, Andrew, and Allie What a beautiful baby!!
Wednesday, June 16th-- 10pm--Allie slept all night in her crib! Granted, it was with the help of fentanyl, but I'll take it. It actually felt weird though to not sleep with her. I struggled to fall asleep because I missed her little body next to mine. I woke up after rolling over scared that I had rolled on her. At 7am, I heard her stirring so I brought her to bed with me. We kept sleeping until 9:30 when Dr. Lenarsky came in. Allie woke up to his standard, "hi baby" and immediately broke into a huge grin. She loves all three of her doctors. He sat and tickled her as he talked to me. Her white count was again at 700 and he expects it to drop even lower. That means-not much immune system right now. Allison needed two transfusions today--platelet and red blood. This now makes 22 transfusions since May 4th. Someone asked me how I felt to see blood (someone else's blood) going into my child. It would be worse to see the alternative of not having the blood. The first time was scary, but now it has become part of our life. She was looking very pale before the transfusion--white lips, little coloration in her cheeks, etc. As soon as the red blood starting coming into her body, we started to see her pink back up. What a difference! My good friend Coleen came to visit me this afternoon and stayed for three hours. We have been friends since the 8th grade, and she is the reason I became a Christian. She started bringing me to her church, and I found my niche there with that group for many years. It was so nice to visit with her. We played with the baby, talked like old times (my dad used to get on our cases when she spent the night because we would gab until all hours of the night), and even got a little cry in at the end. Coleen lives in Kansas with her husband, Frank, so we only see each other once or twice a year when she comes to visit her parents. The last time I saw her was when I was massively pregnant at Thanksgiving. Something about having her around that helped lift my spirits just a bit today. I remembered being a young teenager and how happy I was. Things I want so desperately for my sweet little girl. I was lucky and got to have another visitor tonight, my friend Nancy from school. Nancy and I just visited out in the waiting room for a little while this evening. She and I taught together at Rice (hard to put that in the past tense). My first year teaching, she was in the room next door teaching Math 8 and Honors Algebra. My classes would be singing in French and they would be taking a test or quiz. More than once, Nancy would have to come over and ask us to be quiet and not sing our verb songs quite so loudly. She is going to help me on Sat. morning pack up my classroom. I'm not looking forward to doing that except for the fact that I know I have a few kids coming to help. I am looking forward to seeing them even though I will have to wear a mask the whole time. I have accumulated so much stuff after having worked there for four years. Most of it actually belongs to me too. Some I will leave for the teacher for next year. I spoke with my principal, Carol Johnson, yesterday, and she said they did hire someone else. Someone else in my room. Hard to imagine, but I know its true. As I was talking with Carol, tears began to well up in me. Then, Allie looked at me and began talking and smiling in my lap, and I just knew I made the right decision. Our proofs came in today! Katy is an amazing photographer. They completely took my breath away. It will be difficult to choose only a few that we like. They are incredible! She really captured the love and connection that the three of us share. My favorite picture--the one I think we will have done in a large print and frame--is one of me kissing the top of Allie's head and Andrew kissing the top of mine. Allie is the only one looking at the camera. Its just perfect! We would like to post the pictures, but we will not do so without Katy's permission. She did such a beautiful job for our family. We wouldn't want to do it without speaking to her first. As I told Katy in an e-mail, she helped me remembered what is most important about what we are going through--staying together. It doesn't matter where we are or anything else. All that matters is that the three of us are together as a family. When Allie wakes up, she will no longer be five months old. Tomorrow, we will officially have a six month old daughter! Where has our time gone? Six months old, but wearing 12-18 month clothing! She's a big girl. The doctors said its okay for her to wear clothes, so Andrew is going to bring up some clothes from home tomorrow. Little cotton dresses are perfect because we can still get to her line easily. I told Frances, my mother in law, that, and she went out and bought her a few things too. Grandmas are good for that (I think almost all the dresses that Andrew is bringing up were bought by our moms!) It takes such a long time for me to finish these posts at night. Though it say 10pm, that's just when I started. However, I had to change a diaper, rock the baby, get her to go to bed, and talk to the nurse about night meds too. It would be nice to just sit down and get this done in ten minutes, but that never happens. Pretty much, you should just check for new posts in the morning because it rarely happens at a decent hour! I think this is a good stopping point for tonight. I'll leave you with pictures of my five month old. These are the last ones that will ever be when she is five months. Let's pray that sixth months is luckier than five!! Love to everyone, Jenny
Tuesday, June 15th-- 10:55pm--I've been negligent on getting my post done today. I spent the evening with four very special students at La Madeleine. As I was driving to meet them, I realized that I had brought my camera, not my wallet! So, I had one of the kids spot me the money. How pathetic. It was a wonderful dinner. We sat outside and laughed and talked for three hours (yes, Lindsey, Saturday IS spelled with a u in it!). These were girls that I had taught for several years and are now going into the tenth grade. It took us several minutes to finally walk away from each other. I must have hugged each girl (I know, I was cheating!) two or three times. As I was finally heading to my car, Lindsey ran back for one last hug. Today was another good day. Allie woke up at three in the morning gagging and vomiting just a little. It was mainly just a little mucus that had gotten stuck in her throat. We can tell that she is starting to have mucusitis again because she is gagging more lately. She needed one last dose of benadryl, but Michelle and I also decided to give her fentanyl and adaban for anti-nausea. With this combination of drugs, she should have been knocked out for hours. Not my child. She was awake until almost 6:30. Not unhappy, just awake. I gave her the giraffe, Sophie, and let her play a little and continued to sleep. I would wake up with her about every ten or so minutes just to make sure she was okay. When I finally managed to get her to fall asleep, she crashed. She slept until 10:30, then took another two hour nap this afternoon. We had a very special babysitter for Allie today--Dr. Goldman. Dr. Goldman so kindly offered to watch Allie this afternoon while I was able to get a shower. He arrived at 3:30 and offered up forty-five minutes of his time to play with my girl. How many doctors do you know that would do that? He even changed her diaper! When I got out of the shower, I could hear him singing to her and her cooing back. It was adorable. Since I had extra time, I even got a chance to go out into the hall for a few minutes and visit with my "neighbors." I tell you what--I have fallen even more in love with Sam after today. As Dana puts it, he was full on this afternoon. What a ham! As soon as I walked out, he greeted me with, "Hi Jenny!" Oh, how unfair it is that such beautiful children have to go through this horrible disease. Breaks my heart. Allie is continuing to do well. Her talking was at an all time high today. We just had to whip out the video camera because we were laughing so much. She is awake now after having taken a two hour nap. Confession--I woke her up! I didn't want a repeat of last night, so I woke her up at 9:30 to try to be up for a while. Otherwise, we will for sure have another 3am rendez-vous. Her white count was at 700 today, up just slightly from yesterday. Dr. Goldman said it is common for the numbers to fluctuate just a bit like that. I am still apprehensive though because last time they went up and never dropped again. We'll see tomorrow. We really want them to drop to less than about 200. She gets the hiccups more often now. Goldman told me today that is another strange side effect of chemo sometimes. Weird. They expect for her to get sick starting the end of this week and into next week. I don't know what to expect anymore. I just hope for more good days. These past few have been wonderful. Let's just pray they continue! Goodnight, Jenny
Monday, June 14th 9:00pm--Sam is in REMISSION!! Praise God, Sam's bone marrow biopsy came back showing less than 1% blasts. We had been chatting it up with Sam, Dana, Amy (another mom of AML patient 11 yr. old Jordan) and a few others in the hallway just minutes before they found out. Sam looks fantastic. As soon as I found out for sure, I jumped up and ran to Sam's room to hug the Eisenbergs and get that energy from them--hopefully to pass on to Allie so that she will follow suit! They let me be in their room for a few minutes to share in their joy. Oh, it was a little hard to hold back the tears. To read the whole report on Sam, please check out his website www.caringbridge.org/tx/sameisenberg. Surprisingly, we have had a great day ourselves. Allie and I woke up to a phone call this morning at 8:30 from our pediatrician Dr. Katz. He has periodically checked on Allie and was wanting to hear how she is doing. She immediately began talking. She has become quite the little motormouth in the last few days with her gabbing. Gee, she must have gotten that from Andrew!! :) We played and played until 10:15 and then I took a shower while she watched Baby Galileo. My mom came early to babysit her while Amie, my sister in law, and I went to the movies. Harry Potter---what a great movie!! I have been looking forward to going with Amie for about two weeks now. She is a big H.P. fan like me, making it nice to watch it with her. We first met Andrew at his work and went together for a quick lunch before the show. The theater was empty except for us and four other people. Before the movie started, we just sat and talked. Amie is a wonderful person, someone that I admire very much. I feel so comfortable with her. Andrew's lucky to have such a great sister--she's the best! When we got back at three--we were gone for four hours!--Andrew was there with my mom and the baby. Luckily, we hadn't missed a thing since they hadn't started the myelotarg yet. That started about an hour later. She had to have benadryl and tylenol thirty minutes before starting the infusion to help counteract any reactions. So far, she has not reacted as we were expected. OK, where's the wood? Phew, I knocked. She will get benadryl and tylenol again at 10 and 2am. Allison's gag reflux is very high these days, making oral medications very fun. Benadryl is done through IV, but not tylenol. And lucky us, she throws it up alm,ost every time. All her nurses cringe when they know they have to give her oral meds. We try sneaking it in her, but it usually has the same effect. I might have an interesting middle of the night experience. I'm keeping my fingers crossed. They are monitoring her temperature, oxygen, and blood pressure very closely as those are the things commonly affected. During the infusion, Kochumol took her temperature and blood pressure every fifteen minutes. Allie's white counts are down to 600. She didn't need any blood products today, but I wouldn't be surprised to hear she needs some tomorrow or the next day. Dr. Goldman came in this morning while the physical therapist, Kristen, was in doing a consultation with us. The first thing he says to Kristen is, "Isn't she the most beautiful baby you've ever seen?" Of course, I think so, but my judgment may be a little skewed. Nothing else new to report. They will be monitoring her bloodwork for any indications of liver problems very closely. We've moved rooms again. Here's how it happened--Ted Wren, a very nice man who had a stem cell transplant two weeks ago, left room 1203 today. This room was slated for Sam's triumphant return. In all ten rooms on the 12th floor, room 1202 has a structural column in it that dramatically decreases it's size. Since Dana and Sam will only be here for a few days, she offered to swap us for 1203 and reclaim 1202 for Sam (that has always been his room) since we will be here in the hospital for a considerable length of time. Sam was actually excited to go back to his "special room." This room is much bigger without a column in it! It just feels so much more comfortable. You should have seen us. We were in whirlwind mode about 3:30 packing things up. Most stuff, we didn't really pack, but merely piled in Allie's crib since we knew that would roll with us next door. By the end, we did the whole thing, packed and unpacked, in thirty minutes. Not bad. Brandy is doing very well with the Murphy family, otherwise known as Camp Murphy. She and the other two goldens have become the best of buddies. They take a walk every night, and Cheryl told me tonight that Brandy is actually the best one since she has her pinch collar. Andrew said, "Are you sure we dropped off the right dog?" Penne, their red golden, is the swimmer, jumping into their pool several times daily. Brandy is not that adventurous. She has simply fallen in on accident a few times. I swear, from the stories, you would think Brandy is at summer camp. She is having a blast there. When we get her home, she's going to be sorely disappointed. We try to walk her often, but it doesn't always happen. We are so grateful for the Murphys. Andrew's plan is to go back home soon and keep Brandy at home, but she'll return to camp when its time for Allie's cord blood transplant. Thanks for the prayers last night. They helped protect Allie today. Please continue! Thank you to everyone who prayed for Sammy too. We are hoping with Sam as an example, Allie will follow in his footsteps with her next bone marrow biopsy in three weeks. After all, as Dana's family reminds us, we have a wedding to plan! Love to everyone, Jenny |
||||||||
 |
 |
 |
|||||||
