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Week 3 Sunday, May 23rd-- 8:30pm--Good thing I got good sleep on Friday night because she woke me up several times last night. Then, she barely napped today. She is coming off her fentanyl. Tonight is her last night on it. She will be completely weaned off tomorrow. We'll see if she experiences too much withdrawal. Her lab results looked good. Her white blood count was 3,100. Her ANC is still zero (see yesterday's post for an explanation) due to a lack of segs and bands. For the first time since chemotherapy started, they saw 3 monocytes. These indicate that the bone marrow is working on producing healthy cells. This is a good thing. They were very pleased to see them in her results today. We are hoping to see some segs and bands, thus having a higher ANC, within the next few days. Eating for Allie is still a challenge. She pretty much refuses bottles. She will try to drink and make it through about 1/2 an ounce, but then she will just give up. In a day, we are lucky if she eats 5 or 6 ounces. This from the kid that would down 43 ounces in day. She is enjoying her rice cereal. She had two bowls of two tablespoons each today. Watching her eat is the highlight of my day. She gets so excited when the spoon comes into view. This week, it is very important for her to stay healthy. She has to build her immune system up so that she can go home for a few days and get strong enough to go through the next round of chemo in two weeks. Her bone marrow and spinal tap will be sometime the week of Memorial Day. We are praying for good results from those. We continue to stay positive about her progress. I am going to make this journal entry shorter than normal today. Andrew had to work today, so I have barely seen him. Its so important to me that he and I make time for each other every day. We have to. We may even watch a movie! Have a great night. Thanks for checking the site. We appreciate your support. Oh, be sure to check the new page that I added about donations. There is a neat way to help that doesn't really cost you anything. If you have items to see on E-bay check out this page.
Saturday, May 22nd-- 8:30pm--I got to stay in the hotel room last night! Debbie, my best friend who lives in Austin, came in last night. Andrew stayed here with the baby while the two of us got to go to the hotel and have a "sleepover." When we finally looked at the clock, we saw that we had been up talking until 1:30am. Debbie couldn't be here when Allie was first diagnosed because she had a cold, but this was better. In the beginning, I was so overwhelmed, scared, emotional, that I couldn't think straight. Now, we were able to have a good visit and spend quality time together and with the baby this morning. She came back to the hospital with me this morning and stayed until about 2. It was a great visit. Before Debbie arrived last night, Angela got to come in to the room to see Allison. She refused her bottle, but we thought that she might like rice cereal. Oh yeah, she liked it! We fed her two tablespoons and she literally scarfed it down. When you moved the spoon away from her mouth, she would grunt like a pig! My mom videotaped it while Angela held her and I fed her. We laughed so hard. Mike and Andrew were hanging out with Josh and Joey by the elevators. I suited up and went out to see them. I miss them. Today has been a boring day. As Dr. Goldman says, we like boring days. Her count was stable at 3,400. Her platelets were low, so she did need a transfusion this afternoon. That is to be expected. We are basically averaging a transfusion of either red or platelets every other day. She had one on Thursday, but I think I forgot to mention it. Even though her white blood count is over 1,000, she is still neutropenic. This is determined by her ANC, or Absolute Neutrophil Count. This is the amount of "fight" her blood cells have against infection. It is determined by taking her white blood count, multiplying that by the number of segs and bands in her white blood (the nurse explained this to me as being the babies and teenagers of the white blood cells, they are developing into mature cells), divided by 100. She currently has no segs and bands. So the formula looks like this: ANC= WBC 3,400 X S+B(0)/100 ANC=0 When your ANC is less than 500, you are the most vulnerable to infection and the doctors recommend that you don't go out. Until Allie's ANC gets at least over 250, they won't consider allowing us to go home. Our hope is that next week, we will see some improvement in her ANC and her eating, as well as see her off some of her medications. I asked Dr. Goldman today if he thought we would be able to come home for a few days before the next round, and he felt that was a definite possibility. It all depends on her counts. The earliest this would happen would be a few days after Memorial Day. Hey, if I can take her home for even two days, I'm happy. I miss Brandy, my bed, my kitchen, everything about my home. I miss our neighborhood and even doing chores! I miss normalcy in life. Jacob, the physical therapist, came in this morning to play with the baby. They worked on sitting up and straightening her back, reaching for toys, playing on her tummy, and trying to turn from her back to her belly. She made it all the way to her side, but she couldn't figure out how to get her arm under her out so that she could flip all the way around. She was almost there! Jacob was very impressed with how well she is doing developmentally. She played so hard that she crashed on the mat on the floor for about thirty minutes after Jacob left. She just needed a little catnap. She gets tylenol and benadryl before receiving platelets, so she took a four hour nap this afternoon. I got the joy of taking a three hour nap with her. She is such a snuggle bug. As I sit on the hospital bed typing, my little one is down in her bouncy seat talking and laughing. Her talking has really started within the last two weeks maybe. She is much more expressive with her sounds. Thing is, she doesn't know that she is sick. She knows that she isn't in her house, mom's around all the time now, and there are some strangers poking at her belly more often. Other than that, she has no idea she is a very sick baby. When this ends as we know and trust in God that it will, she will never remember being here. We sure will, but she won't. New pictures for you to enjoy! Night, Jenny
Friday, May 21st-- 3:00pm--Flow results in!!! We are heading in the right direction. Dr. Goldman just called me about twenty minutes ago to share the results of the flow test that was sent to UT Southwestern. When I answered the phone, he said, "You know if it was bad news, I would be face to face with you right now." Her white blood cells, count of 3,600 today, showed to be 99.8 % all lymphocytes, NO LEUKEMIA!!!! This does not mean she is in remission, but it does mean that chemotherapy is working and we are on the right track! She will definitely still be going through the next few rounds of chemo. They want to ensure that if she does go in to remission, she stays there. Relapses do happen, so we want her to have a fighting chance. We've already seen that our girl is an extreme fighter. We aren't done with this battle yet, but she is kicking butt so far! (I just looked back at this page and saw all the exclamation points--can you tell we are happy?) Besides that, not much happened today. She had a bad fussy night. Every thirty to forty five minutes, she would begin to cry in her sleep. So, I was up every time to give her the pacifier and try to comfort her. She is slowing being weaned off her pain medication, fetanyl, which is a pretty strong narcotic. We think she may have been going through a bit of withdrawal. She is on a continuous drip of it, but it less than even just a few days ago. So, we are monitoring it closely. Now, she is sound asleep and has been since about 12:30. I was napping with her until Dr. Goldman told the nurses to wake me up so he could give me the news. He knew I would want to be woken up for that news. Today was the last day of school for my school. Sad that I am not there with them right now. I always cry on the last day of school to say goodbye to kids. I cry hardest at the ones I had the most struggles with because we worked so hard. In two years, you become close to a student. Some of my French students still keep in contact with me, even my guinea pig ones (those from my first year). Though this is not the situation I would have wanted to keep in contact with my kids, it is neat to see them post on the guest book. When becoming a teacher, you have big dreams of touching someone's life and actually making a difference. I hope that I have done that with my kids. They may not always remember the French grammar and vocabulary that I taught them, but I do hope they have taken something from being in my class. The trip to France/Spain leaves on Monday. I so wish we (me, Andrew, and Allie) were still going with them. Last year, we found out I was pregnant two weeks before we left. I wasn't feeling my best on the trip (some students learned the hard way about pregnant women when I jumped over three who were sitting on my bed to get to the bathroom!), but it was the best trip! After ten long days of travel, no one wanted to leave Paris and get on the plane. We could have gone another week with those kids. Even our tour manager, Sarah, commented on what a great group they were. I just hope Sarah loves this group just as much. For those kids traveling on the trip that are reading this--Have a wonderful time! Enjoy every minute, and use your French and Spanish! If you don't know any, ask a friend to teach you some basic phrases. I want nothing but the best report when you get back!!
Thurs. May 20th-- 8:45pm--My goal is to get this finished and posted before ten tonight. Last night was a scream fest from 10:30 until midnight, so I didn't get to post until very late. She was just very gassy and we were waiting on an order for myelecon. Once she had that, everything was fine. I was tired by the time my head finally hit the pillow. OK, the lengths we go to for our children's happiness. My quiet, reserved husband is dancing in front of the baby and making crying noises at her to make her smile! I'm having trouble typing because I am laughing so hard at him! Of course, he is also playing on his gameboy at the same time. You know, he had to save his game, or else he would lose it. I'm sure he will really appreciate me telling this story, but that's what happens when I am in charge of the daily logs! Today was another good day. What made it good? She is alive, happy, and looking great! I spent a lot of time with Dr. Goldman this morning. The good news is that her white count has gone down to 3,100. That isn't a significant decrease, but it isn't an increase either. He still only sees lymphocytes, not myloblasts in her blood. I expressed my fear that this is leukemia that just hasn't reared its ugly head yet, but he felt it wasn't. However, to make me feel better, he has ordered her blood to go to UT Southwestern to undergo Flowcymmetry (I think I have spelled that wrong!). From what I understand of this, it will separate her blood to show the good cells and the leukemia ones. It is an expensive test, but he said he was willing to do it if it would bring Andrew and me some piece of mind. I don't care about the price right now, just do the test! The results should be in by mid afternoon. He said that she looks really good today. During his examination, she just cooed and talked to him, making him stop and comment on her beauty several times. I learned this information today--There is a specific chromosome in infants with AML called MLL (not sure what it stands for). This chromosome makes AML tough to kill, allowing it to be persistently coming back. Most infants will AML have this chromosome; Allie doesn't. Nor will give ever get it--you either have it or you don't. There is another chromosome in leukemia patients that is good and helps them ward off and fight the leukemia, Allie doesn't have that either. So, as Dr. Goldman explains, she doesn't have the bad, and she doesn't have the good. He didn't expect for her to have the good though because that is rarely found in infants. I got the most encouraging phone call tonight. About an hour ago, a woman named Allison Sutter called. I have never met Allison until this call. She lives in California. Her friend had been participating in a leukemia walk, not sure in what state, and saw a picture of Allie on a woman's shirt in front of her. She asked the woman about Allie and found out the whole story, including the website. The friend then e-mailed Allison to tell her about the baby and Allison called the hospital within five minutes or so of reading our site to talk to me. Her daughter, Koko (Katherine is her full name) was diagnosed with AML at the age of five months. They went through over a year of treatment, including ten months at Duke University for a cord blood transplant. Koko is now a healthy and thriving FIVE YEAR old little girl. She said that if you saw her in a crowd, you wouldn't tell she went through all this as a child. In fact, she spent most of her life until the age of four indoors away from the general public. According to Allison, you wouldn't know it today. Tears were streaming down my face as I heard this story. There's not a lot of infants with AML, so to hear a story of one so similar to ours with a positive outcome, what a joy! I can only pray that there have been continued advances in medicine since Koko's AML that will help my little Allison fight this. Allison gave me her number to call if I need to talk, and she promises to call again next week. I am thankful for whoever it was that had that picture of Allie during the leukemia walk. That helped bring a survivor's parent to me and give me even more hope. I know I jump quickly from one topic to the next, but there's so much to tell from today! Allie got down on her mat this afternoon for play and tummy time. I put a thin pillow under her to help with her broviac line. I was just nervous about anything hurting her. Anyways, after about a minute on her tummy, she rolled! I was talking on the phone at the time, and I know I must have yelled into the phone. I was so excited. She had rolled right before she turned four months, but she stopped when the leukemia started getting worse. It all makes sense now. About mid-April, she would cry if picked up too hard from her tummy, and she would scream on her belly like she had never done before. Well, her liver and spleen were swollen, of course it hurt. Final story of the night--even in the hospital, I have to have some humor. When Allie was 7 weeks old, she had her pictures taken at Sears. They came out so cute. One of them, we ordered a large print of. When we got the picture in, we noticed something weird about it. Well, I have now realized the reason for the picture. I made a poster for her doctors and nurses to give them a bit of a smile. Here it is. Look closely at Allie and what she is doing, and you will understand the humor.
Allie's Salute to AML
Hope it gave you a laugh! In times like these, we still need to laugh. Its either that, or keep crying. I choose the first.
Wed. May 19th-- 10:15pm--She woke up cooing and "talking," and she is falling asleep in her crib right now doing the same. The only time she fussed today was when we put her down when she was still wanting to sit up. As you will see with the pictures below, she was such a happy little one today. Her rash looks good, just a little bit left. Her first diaper change of the morning was an interesting and humorous experience. I was the lucky one was received the shock of the morning when all of a sudden, (by the way it was a pee diaper, so I had removed it completely), she SHOT out poop! And I mean, shot it out. It went all over my arm, the crib, and landed two feet passed her rear on the floor under her crib!! And when I looked at her face to see her reaction? Nothing but laughs and smiles! She was quite proud of herself. As for our concern from yesterday, her white blood count is still on the rise. It was 3,700 today, up from 2,400 yesterday. This is concerning because they are not sure if this means her leukemia is coming back. Dr. Goldman said he could not see any blasts, leukemia cells, in her blood today. What he is seeing is new lymphoid cells that are non-malignant. In other words, he is seeing a production of new good cells. Her liver and spleen are not enlarged, a normal sign of leukemia. The fact that she is happy is also a positive. At this point, this is positive, BUT if her count goes up to over 10,000 by the end of the weekend, she will have to have a bone marrow test right away. She was scheduled to have one in two weeks, but he will want to do it sooner to see if there is a problem. It could be that everything is fine and she is starting to recover quicker than normal (that is the hopefulness in me!) or that the bone marrow is producing myeloid leukemia cells that aren't going up in her blood stream yet. If that is the case, she will undergo a re-induction of chemotherapy. Essentially, this means she would be starting from scratch all over again next week. Let's keep those prayers going! We had our first visit from Jacob, the physical therapist. I had expressed my concern to Dr. Goldman about her growth and development being stunted being here in the hospital. To help ensure that doesn't happen, Jacob and Linda, a Child Life therapist, are coming to do playtime with Allie several times a week. They brought us a big gym mat for her to play on the floor. I asked Angela to bring up her tummy time toy that we keep at Angela's so she can play. Tummy time is important at this stage of her development to help her learn to roll and eventually crawl. We were too concerned with her lines on her chest to attempt it. Jacob assures me it is safe to try. I just have give her enough slack on her IV lines. He said she needs playtime as much as she needs the medicine and recovery here in the hospital. Dr. Goldman approved me going out for dinner tonight. When went to Luna De Noche right around the corner from the hospital. Andrew and I enjoyed our meal, and then Mike and Angela met us after we finished eating. We moved ourselves to a patio table and sat with our sodas outside to talk. I really needed to be away from the hospital. To come back in the room, I had to immediately shower and change into all new clothes to make sure I didn't have any germs left on me. This room and the anxiety and stress of having a baby in the hospital has made my stomach turn in knots and made me lightheaded. I feel dizzy when I sit up and walk around in here. While gone, I didn't experience any of those feelings. As soon as we walked by in the room, I was immediately feeling dizzy again. I am going to mention it to Dr. Goldman in the morning. Not sure if he can do anything, but it worth mentioning. I truly think it is anxiety. After thirty minutes back in here, I had to walk out again. This time, I put on my full garb of gown, gloves, and mask and headed down the elevator. A lady joined me a few floors down. You could tell her apprehension of getting on the elevator with me, so I explained that it was to protect my daughter when I returned to her room, not to protect strangers from some strange disease I had. I sat on a park bench and spoke with a nice family that is here to discover if his mother has had a relapse of her stomach cancer. Every I go, I meet people, and everyone has a story. Just one more person I will be adding to my prayer list tonight. OK, I am retiring to bed now. Love to everyone!
Tues. May 18th-- 10:20pm--This is my first moment to really have to myself today. Even when Allison was sleeping, I still was working on decorating her room, answering the phone, or actually trying to eat a quick meal. During her awake moments, she wanted no one but Mama or Daddy when he was there with us. She commanded my attention. If I wasn't looking at her, she would fuss. As soon as I turned and caught her eye, she would break out into a huge smile. What a little stinker (she used to do that with Angela when she was babysitting her, and Angela always affectionately called her a little turkey)! Hard to be frustrated though when she just looks so adorable! I was able to get out into the 12th floor hallway, with my full getup, for about twenty minutes this evening. We now have Dr. Goldman for this week. Just like the other two doctors, he is wonderful. He couldn't get over how good she looked, given that the last time he saw her was when she was very swollen in PICU. Her rash is continuing to show improvement. She still has some signs of it, but it is reducing. He thought it could be a reaction to the histamines in the narcotic pain medicine she is on. He said she may just be a "rashy baby" who is prone to breakouts from certain medications. Our concern right now is that her white blood count is up instead of the expected down. It is 2,400. At this point, we should see it below 1,000, not above. The lab diagnostics came to Dr. Goldman showing 8% of what they were seeing to be blasts, or leukemia cells. He went to the lab and examined her blood under the microscope for quite a while. He stated that what he saw this morning looks different from leukemia cells. His preliminary guess that it was bone marrow regenerating and forming new cells. Not exactly sure right now if this is a good or bad thing. We won't know for positive if it is growing leukemia cells until the next bone marrow biopsy, which is supposed to be in two weeks. However, if her white blood count continues to raise in the next three or four days, we may do it sooner (which may also mean doing more treatment sooner). I am very unsure of what is happening, and I am very apprehensive. I would feel a whole lot better if I understood exactly what he was saying. Gosh, I wish I had paid more attention in science class as a student!! On a more positive note, I don't have to wear a face mask anymore! So long as I am always in this room with her, I can be without one. That means we can touch and be face to face! I love it. I kissed her so much today. She was probably thinking "enough already!" but I couldn't stop. I haven't been able to really kiss my own child in two weeks. Her weight was down again to 9.4 and her preliminary results of her nose swap came back negative for a virus. We are still waiting for the other two tests to completely rule that out. Remember the three year old here in the hospital room next door to us, Sam Eisenberg? Well, he returned today for his next eight days of treatment. The good, no I mean GREAT news, is that he is in remission!! This means that they cannot detect any leukemia cells. They still do have to go through his full induction treatment of chemo and his bone marrow transplant, but things are looking very positive for the Eisenbergs. I cried tonight when I heard the news. His mother, Dana, and I got a chance to talk in the hall tonight. It is so nice to talk to someone that knows the situation. It truly brings me a kind of comfort to talk with her. After we both went into our rooms, I heard a knock on Allie's door window. There, looking through the window was Sam, Dana, and her husband Dennis. My mom and I walked the baby (and her IV pole!) over to the window so they could look at each other. Sam was so adorable! He blew kisses at the baby and smiled really big. I stood there with tears in my eyes. If you would like to hear about Sam's journey with AML, visit www.caringbridge.org/tx/sameisenberg. I am just now thinking I may be able to get a shower. Its 10:40, and I think she may finally be asleep. Nope, I she just started crying again. The shower will just have to wait! I have to get some rest to be ready to do this again tomorrow. Hey, anything for my little girl! I would do absolutely anything.
Monday, May 17th-- 9:30pm--Allie is five months old today! All things considered, it was a good day. She woke up happy, her rash had looked a little better, and she stayed in a good mood all day. The negative thing was that her weight was still up. On Sat., she weighed 9.2 kilos (multiply by 2.2 to know the pounds). Yesterday, she was 9.47, and today she was 9.61! That is almost 22 pounds. That is too significant of a weight gain in a short amount of time to think that is normal. What this means is that she is retaining too much fluid. They gave her more lasix, and it is helping the swelling. We will hopefully see a change in her weight tomorrow. Her count is still a critical low, so we are hoping infection doesn't set in. I swear, this little baby has taken every new thing thrown at her without every losing her good demeanor. If it was me--watch out! I would not take it as well. Her rash is still a mystery. It is not as red today, but it is still all over her body with small bumps. However, they didn't think it was any particular rash that they would be concerned about. There are a few distinct rashes that would make them alarmed, but hers does not look like any of them. Dr. Weinthal came in with the infectious disease doctor (can't remember his name though) and discussed their opinions. Most of what they said to each other was over my head, but what I did understand is that they are still waiting for the results of the culture tests they sent out and they don't want to change any of her medications. They felt that changing her meds at this point could cause more harm then good. It could be a drug reaction, but she is on too many medications to begin experimenting to find out the exact drug. Isolation is tough. I didn't leave the room once until 7 tonight. I stepped into the waiting room for about ten minutes to visit with our good friends Kris and Jacque Kline while Andrew stayed in the room with her. Other than that, haven't even opened her door. Her nurse Kochumol was my closest friend today. That and the three movies I watched on TNT. Lots of fun. Hey, if it is what I need to do for my daughter, it is what I am going to do. Funny thing is, I'm exhausted. I did nothing all day and it really wore me out! The nurse staff here is incredible. We have had many different nurses and there isn't one that I wouldn't want to care for my child. I know that the 12th floor is where we belong. She is getting the utmost of care here. Kochumol watched Allison for me while I took a shower this afternoon. As I stepped out, I could hear her telling the baby, "I love you my baby. You're so wonderful, Allie!" Then, I guess Allie would smile at her because I could hear her started laughing and saying, "Yes, I do, I love you!" She even blew her a kiss goodnight tonight when she left. Andrew saw our nurse, Beth, from last night and ask if she had Allie again tonight. Beth's reaction? "I hope so!" A few people have mentioned the Ronald McDonald House to us as an option. We don't meet the criteria of having to live 70 miles away. Our hotel has been paid for by Andrew's company for the time being (thank you so much!). My brother, Jeremy, is still at our house taking care of Brandy. He takes such good care of her--she's getting very spoiled! (well, even more than she already was--I mean, we do have a page on our website just for the dog and a cookie jar of dog treats on our kitchen counter!). Jeremy is planning on going home to Houston at the end of the first week of June. If Allie is doing well, we may be coming home for a few days the second week of June, as that is our third week after chemo. Now, that would be a great anniversary present (our fifth wedding anniversary is June 5), to be in our home as a family! The plan is that Andrew will then go to staying at home to take care of Brandy while I stay here for our next 8 days of chemo that begin at the end of this three week recovery period. If she is doing well after that, we may get to be home as a family after that 8 days and have our next recovery period in our home. Wouldn't that be nice. Please keep forwarding Allie's story to others. To me, this is a story about a five month old, but it is also about so much more. I am amazed by the response our site has gotten. It is a story of strength and bravery (mainly Allie's, I don't give us much credit. Andrew and I are only brave for her), of the kindness of strangers, and of the bonds of friends and family. People have e-mailed us and posted on the guest book some very uplifting words of encouragement. In this day in time, it kind of renews my faith in humanity. Makes you realize that there is still good in the world and that kind, loving people do still exist! I love reading the stories of how people have come to hear about the baby. Thank you for your prayers. For tomorrow, please pray for negative results from the culture tests (would mean that she doesn't have an infection), reduced swelling, and continued happiness in Allie. For me, pray for guidance. I need to make some tough decisions about finances and such, so I could use that help. Pray for my sanity as I stay locked in this room! For Andrew, pray that his days at work go alright and that he is able to handle the pressures of working and having a child in the hospital. It is hard for him to be here and see her, but it is even harder for him to be away. I know today was a difficult day for him with it being his first day back to work. Pray for our parents who are struggling with watching their grandchild be ill and for my brother Jeremy and his sister and brother-in-law, Amie and Mike. A month ago, I was doing an assembly with my PAL students to the student body about the Make-A-Wish Foundation to kick off a fundraiser. I told the students that when a child is very ill (beyond just your coughs and sniffles, of course), it is not just the child that is affected but also all the family and friends too. Boy, I didn't know how true that statement really is! So, please continue to pray for us. I know we have many churches and families giving us their prayers, and I know that we need everyone. God bless you! Only one picture tonight. Here is Allie about a minute ago. Nice to leave this on a good note--a content, sleeping angel. Have a great night.
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