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Week 10 Sunday, July 11th- 11:00pm--I know, I know, my post is late tonight. The reason is because I went out! I got to have dinner at Luna de Noche with my French teacher friends. These are five women I highly respect and love to be around. We get together for inservice once or twice a year, but we try to make it a point to have dinner together at least once a semester. We had dinner the week before Allie was diagnosed. I don't think I've laughed as hard as I did tonight in a long time. They are so easy to be around. Dinner started at 7, and we didn't leave the parking lot until around 10:15. It will most likely be my last outing for a while, so I am grateful that I got to spend it with them. Hopefully, I will work with them again one day. Thanks Cathy, Megan, Marie, Patti, and Janice!! You gave me a wonderful evening out. Megan drove me back to the hospital because Andrew and I had walked there together. As we were pulling up to the Emergency entrance (the only one open after nine at night), I noticed Matt and Amy, Jordan's parents, sitting on a bench. I got out of the car and asked what was going on. Jordan had been admitted to 6D Pediatrics on Thursday for a platelet transfusion. After waiting ALL day, they got his transfusion at 10pm. However, he spiked a fever of 103. Not good for a post transplant patient. Unfortunately, they were told they had to stay on 6D. Jordan was not happy. If he has to be in the hospital, he wants to be up here with us. Since being there, they have messed up his meds several times, and he is very unhappy there. Matt and Amy looked drained. We talked downstairs for a while, then I asked them to walk me to the elevators. They came all the way up to 12th South with me. I asked Lourdes to come and sit with Allie so Andrew and I could both talk to them and the nurses. Amy told our nurses about their problems on the other floor. We just had someone leave today, and we are hoping that they can get the new admit that is supposed to be coming tomorrow transferred to the 11th floor. They want Jordan up here, and so do we! Please pray for Jordan. So far, nothing is showing up in his bloodwork. Everyone is stumped. They can't figure out the problem. Dr. Lenarsky says it could be GVHD, graft vs. host disease, but he is unsure. He is now running a fever or 101, but it is enough to be concerned. As for Allie, she couldn't be any better. I thought yesterday was the best day? No, definitely today. At four in the morning, I woke up to a wet diaper. I had to change everything--clothes, blanket, pad, etc. This woke her up. You would think if someone is messing with you at four in the morning, you would be a little peeved. I know I would be. Allie opened her eyes and smiled. So, we did what was natural at 4am, we played! She sat up and we played with her giraffes. When she started getting tired, we laid back down and smiled at each other, occasionally sticking out our tongue. She fell back asleep around 5:30 staring at her two thumbs. She decided on the right one, popped it in her mouth, and fell right to sleep. Didn't wake up for chemo at 6, nor did she stir at 8:30 when Dr. Lenarsky examined her. Lenarsky and I spoke briefly (no new information), and I went back to sleep. We slept until 9:30! It was such a great way to wake up. She woke up with a smile, and never stopped. My cousin, Michelle (my dad's sister's daughter), is in town from Indiana. Her company gave her the option of Dallas or Memphis for her business trip, so she jumped at the chance to come and visit us. I haven't seen Michelle since my dad's funeral. Before that, it had been several years. Now that I think about it, it must have been at our grandma's funeral. How is it that people only see each other at funerals or other bad times? I've seen or heard from people that I have lost touch with since all this happened with Allie (like you, Cindy Preece--call up to the hospital sometime, I'd love to talk with you!) Why don't people make better efforts to stay in touch with others during the good times? I don't know. It was nice having Michelle here. We went to lunch at Benihana's (I got out twice today! Woo hoo!) with my mom and her boyfriend, Bill. She came in with me to see Allie and stayed until I left for dinner. Andrew's dad's cousin came to visit us too with her son, Grey. We visited in the waiting room, and we walked Allie to the window to show let them see her. What a little performer she was today! During tummy time, she rolled from her belly to back. She has been able to do this for a while, but today was the first time she rolled from back to belly. Andrew, Michelle and I all clapped and cheered for her, causing her to begin to cry. I think we scared her. Poor thing. Developmentally, she is only slightly behind. Not bad for a baby that slept for an entire WEEK and barely waking up! We put Allie down for a nap, Andrew went to play games on the computer, and Michelle and I settled in on the couch to catch up. I remember a time when I wanted to be Michelle. She is the same age as Jeremy, and she came to visit us when I was in the sixth grade for over a month. We lived in Martinez, California at the time. I still have good memories from that summer. Michelle is someone I really up to, even now. It was almost as if we re-introduced ourselves after all these years. She'll be here on business tomorrow, but we are going to have dinner tomorrow night. She then goes to San Antonio for the day on Tues, but comes back Tues. night for dinner before flying back on Wed. I just hope its not another four years and something tragic before we talk again. Hope we can stay in touch better than that. Please say a prayer tonight for our friend here on 12th South, Ted Wren. Ted had his stem cell transplant in May and is not doing well. He has GVHD pretty badly, and he now has a severe bacterial infection, placing him and his mother May in complete isolation. He needs prayers, as do his children Haley and Joel, and his mother May. Tonight is her last dose of busulfan, one of her chemos. She starts a new chemo, cytoxan, tomorrow morning. This one goes until Thursday, with Friday being our day of rest. The biggest complication that can occur with cytoxan is bleeding in the bladder. They will give her a medicine to help prevent this, but they will still keep a close eye on her. Dr. Lenarsky did say that with the immuno-suppressant drug she is getting Wed-Fri., he expects her to spike a fever and break out into a rash. Great. More fun to look forward to. For now, I am leaving you with happy thoughts. Allie did nothing but smile today. Her pictures don't do her justice, as Michelle noted today. That child radiates beauty, both inside and out. Dana ended her post last night with the suggestion of kiss someone today. What a beautiful idea. Have you told your loved ones today how much they mean to you? Have you held your children tight? Stop and do so. They need to feel our love. Andrew and I believe that is what helps Allie stay alive. She feels our love and comes back to us everytime she starts to slip away. She will always feel that love from us. Always. Sending my love to you, Jenny, Andrew, and a very smiley baby Allie
Saturday, July 10th-- 5:50pm--We are having such a fantastic day! Easily one of the best days we've had in a long time. Allie has been smiling and happy all day. Andrew and I have done nothing but spend quality time as a family. Allie and I napped together. She woke up earlier than I wanted, so Andrew sat with her in the rocking chair while I kept napping. Everyone is in a good mood. We are enjoying our time together. I don't want to post much since I did so much posting this morning. Just wanted to share our joy with you. For today, Allie looks like a normal healthy baby. We have been making up silly songs. The one that makes her smile the most is to the tune of "If you're happy and you know it, clap your hands!" Instead, we're singing, "If you're gonna beat the cancer, say your name--Allie!" She is wearing an adorable outfit that we bought from Old Navy. I just can't believe it is an 18-24 month outfit! She isn't even 7 months old! We are refusing the hospital gowns now. We were putting them on at night for pajama's, but I have vetoed them completely. They make her look sick. She needs to feel healthy. Onsies at night and dresses, or cute skirts (can't wear shorts since she has her lines) during the day. Have a great night! Jenny, Andrew, and the very chunky monkey Allie
10:10am--As promised, I am back again to write more about yesterday. I still cannot believe I did that last night. Oh well, little thing I can't let get to me. I am sitting in my computer room here at my own house. The house is a bit of a wreck. Andrew doesn't have a chance to clean it. There is stuff everywhere, but I am trying not to say much. He spends most of his time either working or in the hospital. He really only comes home late at night to relax, play with Brandy, and go to bed. No energy to clean up at all, and I don't blame him for that. He has a lot of responsibility on his shoulders since he is the one who has to work. We are going to have to sit down soon and do a tight budget. Some of the little things we enjoy, like Netflix or Tivo, might go away. Minor to me if we can financially afford to stay in our house. Very minor. As much as Allie has endured, I am often shocked to see her doing as well as she is. On Thursday, her bilirubin was high at 5.5, which was what was causing the sludge in her liver. If the doctors can call it sludge, that's what I'm calling it too. The sludge could have been very painful for her. I think that is why she would let out a high pitched shriek every once in a while. Yesterday morning, I woke to Dr. Goldman's "Good Morning!" at the door. The first thing he said was, "Hey, congratulations on the bilirubin!" What? I had limited sleep the night before (due to the stupid nurse's call light malfunctioning and going off EVERY fifteen to twenty minutes all through the night!), so I was a bit confused as to what he was talking about. He explained that her bilirubin level had gone down to 1.6 over night. He was very surprised because he and the GI doctor, Dr. Whitney, had prepared us that it could take a few weeks. A normal level is under one. You know, nothing about this child surprises me anymore. She is the ever amazing superbaby! Andrew had the whole day off yesterday, so we got to spend some much needed family time all together. Its hard sometimes to just be the three of us. We played, watched TV, fed the baby, and all napped at the same time. Almost felt normal--that is until our nap ended because the doctors came in to check on Allie. I had told Angela a couple of days ago that if she wanted to see Allie before she is not allowed any visitors, she had better come before today. Andrew offered to take the boys for ice cream so Angela could come up to Allison's room. The boys showed up in Hawaiian shirts looking so handsome. Sometimes it hits me how much I miss being around Josh and Joey. Josh had a fresh boo-boo on his head from falling the other night at Circuit City (ran into a pillar, I think--ouch!). He told me all about it. I just wanted to scoop him up and kiss him. Love those boys. Angela got to experience firsthand life at the hospital. As I have said before, there is a constant flow of people coming in and out of her room. There is no such thing as "stranger danger" for Allie. She has strangers looking at her all the time! When we walked into the room, Heather, the occupational therapist (trying to help with Allison's eating, or lack there of) was in. I had left the two of them together to let Angela in. Annette, the dietician, was always sitting down waiting. As soon as they left, in came Kochumol to do something. Next came Jacob, the physical therapist. Allie wouldn't concentrate on physical therapy because she just wanted to stare at Angela from across the room. She kept her eyes fixed on her. Such a connection between those two. She did well during her PT time, and showed the classic signs of being tired when she was finished. Angela rocked her and she fell into a deep sleep. Kochumol came in to take her vital signs (we do this at least every four hours), and Allie didn't even budge. The two of them rocked peacefully, with Allie holding on to Angela's necklace. I don't know how many times the two of them took naps like that when I was working. Probably quite a few. You could just tell it was a place Allie recognized and was comfortable with. My mom arrived shortly after to spend the night. She has been looking forward to having Allie come spend the night with Grandma since I was pregnant. Since Allie can't come to her house, mom comes to her. Its nice because Andrew and I get a break at home. We left around 6:00 (and we still haven't gone back yet!) to go to dinner with Mike, Angela and the boys. I sat in between Josh and Joey at the restaurant, having both of them tell me things throughout the whole meal. Reminded me of normal days long gone. We had a quiet meal at a little Italian restaurant. Before we left, Angela and Mike each took a boy to go to the potty, leaving just Andrew and me at the table. Behind Andrew, a family sat all together with their baby girl. She looked to be about Allie's age. I'm usually okay, but some things get to me at odd moments. I began to cry right there at the table. Andrew just looked at me and said, "Yeah, I know." He knew what I was thinking. Allie SHOULD BE THERE!! She should have been with us, not in a hospital. I should be spending my summer days hanging out with Angela, Josh and Joey. We should be going to church on Sundays and heading out for Sunday lunch afterwards. We should be having mommy and me swim lessons (something I had looked forward to). My best friend Debbie is moving here in about five days. We have lived in different cities, me here and her in Austin, for about eight or nine years. Her two children, Hannah and Ben, are my godchildren. I've been excited about the prospect of them moving here for months. Now, I can't even go and help her unpack. I can't just go and hang out with her whenever I want. Sucks. Just sucks. But then, I see my baby's smiling face in my head, and all those feelings just melt away. I am reminded that those things don't matter. All that matters is that she is alive and with us for another day. She is an incredible reminder to me of how precious life is. Between Allie and Andrew, I must be the most loved woman in the world. Not to mention the love we get from our moms, other family members, friends, and now countless others that we have met because of this. I love that someone tells us that they have learned to love their children even more because of Allie and what we are going through. I knew from the moment I looked at her that Allie would change our lives forever. I just never realized to what extent. Now, she is changing many lives. Wow. It blows my mind. So difficult to comprehend how my little girl is touching more lives in her almost seven months then most people do in a lifetime. Andrew and I are heading back to the hospital now. Mom called to say that everything is going really well. She slept well and was playing with Jacob when we talked to her. Dr. Lenarsky is back from his vacation in the Bahamas where he went scuba-diving. Lucky him. Hey, I "went south" for the summer too--12th South that is! Sorry, bad joke. Lenarsky said that Allie was looking great so far. Her bilirubin level is back under the normal range. Today is day three of chemo. They call it Day minus 7, meaning 7 days to transplant. Transplant day is Day 0, then they count up from there. She has not had too many reactions yet to the busulfan, chemo drug, so far. Her counts are already beginning to drop, and she is now neutropenic. Been a while since I have used that term, so let me explain it again. Neutropenic means that her ANC (Absolute Neutrophil Count, or the number that calculates how much fight she has in her) is under 500. She is now in that very susceptible to infection stage. Soon, her ANC will be zero and will stay zero for several weeks post transplant. This chemo is pretty rough, so hopefully she will continue to handle it as well. Have a wonderful Sat. I know we will because we will spend it with the best baby we know! Love, Jenny, Andrew, and the ever amazing superbaby Allie
Friday, July 9th-- 10:20pm--I've just spent the better part of an hour typing a very well written post. What happened, you ask? I DELETED it by accident! While trying to send it to the internet page, I hit the wrong button. Darn! Now, its 10:20, and I want to go to bed. Andrew and I are at home and Allie is sleeping peacefully with her grandma. She had a great day. Her bilirubin level that tells us of her sludge level in her liver was down significantly today, so she isn't as jaundiced. Things are going well for her. I promise to write in the morning. Can't believe I lost that post! Could have easily been the best one I've written, and you'll never know it. For now, I'm going to bed. Just wanted to post and let you know I didn't forget, nothing is wrong, Allie, Andrew and I are all in great moods. Just stupid user error! Love to everyone, Jenny
Thursday, July 8th-- 9:25pm--I'm tired. I don't think I will do a long post. Andrew is on the bed with the baby as she is fussing a little. She has slept a lot today, but I was not able to. I'm not sleeping well at night. She kicks me in the stomach and wakes up a lot! Michelle took Allie to the nurse's station last night and kept her there with the other nurses from 3-4:30am. They passed her around, rocked her, fed her, and got her to fall asleep with the aid of a little fentanyl. I woke up this morning to Marlene drawing her blood. This surprised me because they usually do it at 4am. With the start of this new chemo, they had to draw her blood every fifteen minutes for the first hour and then once an hour until the next round at noon (she gets four doses a day for four days). They have to check the levels of busulfan in her blood to see if they need to make any adjustments. Allie is jaundice today. Her bilirubin level in her liver was very high, indicating a liver problem. Dr. Goldman ordered a sonogram of her liver and gallbladder and asked for a GI doctor to come and check on her. Her skin is just slightly yellow. Turns out she has "sludge." That's the term they are all calling it. Her liver is backed up with sludge. This was probably caused from red blood cell transfusions and TPN, her nutrition. Dana said that Sam had that too. She will take a medication to help reduce this twice a day for several days. I had several visitors today. Sam and Dana came to see us after his visit to the clinic. He looked perfect. He told me how happy he was to see me and greeted me with lots of enthusiasm. His first meeting with the radiologist is Monday, and they will have to put him under to check him out. Should be a logn day for Dana and Sam. The visit ended with him declaring his need for McDonald's french fries, his daily fix was calling. Amy and Jordan were up for his visit and Jordan was admitted to 6D Pediatrics floor for a platelet transfusion. Once he has had his transfusion, he no longer has to stay. Problem was, when Matt and Amy came to visit us at 8pm, he still had no gotten his transfusion. There is such a shortage for platelets that they didn't have any in the hospital. They will be most likely here over night and then get to go home in the morning. He is doing well at home, except that he is developing a slight cough. Post transplant, this is very scary. Amy is very worried. I opened my e-mail this morning to over 50 e-mails. Please don't be offended if I haven't written you back yet. I am still going to put up the questions, but I think I will wait one more day. Don't have the energy to do it tonight and Andrew is waiting for me to finish the post so he can head home to Brandy. Thank you all for the comments in the guestbook. All your well wishes are appreciated. I feel as if I have kind of gotten to know some people just from what they post in the guestbook. I love to see the "regulars" like Emily Parsons or Kim in Fort Mill to name a few that post. I have never met these ladies, but I smile when they post. Thank you to everyone who posts. Also brings a big smile to see a line from my students too. Any kids reading this--please drop me a line to say how you are doing. I miss you! Night to everyone. Love, Jenny, Andrew, and Allie Cat
Wednesday, July 7th--Allie starts chemotherapy TOMORROW!!
Chemo? Oh goody!! (By the way, Grandmas do not get credit for this dress--this was one that Mama could not resist!) 9:20pm--Yes, you read that right, tomorrow. After seeing her chemistries today, we were still trying to figure out what was going on. I told Marlene that I didn't understand why we weren't starting the chemo earlier than Monday. I just thought that she would have a better chance if we started early. She has fully recovered from her infection, she looks good, and is still relatively doing well. I found out about an hour later that Dr. Goldman shared my sentiments. The transplant coordinator, Kelly, had me sign some consent forms to have the cord FedEx'd in. My child's future lies in the hands of FedEx right now. The cord is expected to arrive on Friday. It is frozen, and will go to the lab up here on the 12th floor. It then goes to the lab coordinator Dean (who Andrew said that Amy and Matt says his great--according to Andrew, the "shiznit!"--What does that mean exactly? Hey, Dana-ask Alex for a translation!). Dean will count the cells and make sure that everything is okay. We had the big transplant talk with Dr. Goldman this afternoon. Lots of scary information. Many things that could kill Allie, but without these things, Allie WILL die of leukemia. There is no guarantee that she won't die even with the transplant either. There is a possibility that even with this, she won't survive. Then again, there is a possibility that the transplant can give her a long healthy life. Here is my best summary of what was discussed: Chemo Conditioning She starts chemo at 6am tomorrow morning. For the first four days, she will get busulfan. The biggest common side effect of this drug is seizures. Tonight, she will begin taking Dilantin, an anti-seizure medicine. With the Dilantin, Goldman, says the risk of seizuring is significantly lowered. The next four days, she will get another chemo named Cytoxan. The biggest scare with this one is liver malfunction. They will monitor liver function daily with her lab work and do have medicines to help counteract problems. Of course, the normal side effects usually associated with chemotherapy all still apply with these two chemos. She will have mouth sores, lose her hair, and have lots of nausea. The purpose of these drugs will be to kill off the remaining leukemia. The hope is that these two drugs will be able to wipe out what is left in her body. After this chemo, her body will not be able to recover new cells on its own for at least six months to never, making the transplant essential. This chemo round is even stronger than the last. He says about twenty times stronger. Holy crud! On the ninth day, next Friday, she will get Cyclosporine. This is an immuno-suppressant that helps keep the body from rejecting the transplant. This is a day of rest between chemo and transplant. Chemo stays in the bloodstream for only a day. This means that it will attack the cells currently in her body and continue to eat away at those, but it will not effect the new cells entering her body. Transplant Her cord blood transplant is on Sat. July 17th. This is actually fairly anticlimatic. It looks just like a blood transfusion. Hooks up to her line and enters her body through her broviac, or central line. The cord is coming from Duke University. It is from a boy's umbilical cord. They prefer to use stem cells from the opposite sex if possible because they can clearly trace those cells later on in her body. The period post transplant is called grafting. The new cells should be differentiating and grafting into her body. They can see precisely how many are her new cells because they can see Y chromosomes, indicating the new graft cells. Post Transplant One in five patients will die post transplant due to complications. That was the statistic we were given. One in five. Goldman did warn us against certain statistics. Such as the statistic that Allie has a 15-25% survival rate. We have to remember that Allie isn't a statistic! But, numbers can be indicative of things that can occur. We are in a scary world. Dr. Goldman did say that they have had several successful cases of cord blood transplant from AML. He gave the two examples of two teenagers that I have heard from them all--one is even about to graduate from Stanford. Dana and I think he is their "poster child for AML." There are so many possible problems and issues that can occur. A big thing is GVHD, or graft vs. host disease. This is where the lympocytes found in her transplant cells seek and destroy Allie's system. What I was surprised to hear is that a small amount of GVHD is desired because it can also seek and destroy any leftover AML cells in her body. However, GVHD can be fatal if it is too severe. If it gets out of hand, it becomes Graft Vs. Allie. They have lost children because of this complication. For the first four to eight weeks, Allie will be neutropenic without new cell recovery from the transplant cells. Infection is always something to be afraid of. Most likely, the infection would come from her own body, as it did the last time, but we still have to be extremely cautious. She will not be allowed any visitors except for me, Andrew, and grandmas until at least mid August. There is a host of other problems and complications. If this works, she could be cured. It is still a possibility that even with this mega chemo and transplant, her leukemia can come back, even as quickly as a month after. Dr. Goldman says that if her leukemia returns, we would not do another transplant. Results are very "dismal." We would try another medicines, but he pretty much said they would be to merely prolong her life. To hear words like these and realize that you are discussing your BABY, indescribable. Takes all you have in your body not to jump up, grab the baby, and run out the door. We asked about several things. One was about her growth and development. She may be shorter due to this, but not as badly since she is not getting radiation. Radiation in children this little can cause significant lowering of IQ levels as well as a list of other issues. Neurologically, it is not an option for Allie. Developmentally, there is nothing that shows them she will struggle later in life. I have spoken to Alison Sutter, a mother in California, several times on the phone. Her daughter, Koko, was diagnosed with AML at age five months just like my Allison. Koko is now five years old and starting kindergarten. She too had a cord blood transplant. Alison says that you couldn't tell one bit looking at Koko that there was ever an issue before. Platelet and red cell transfusions are critical during this time. Until grafting begins, around two to four weeks post transplant, she won't be able to produce those new cells. Typically, patients go home from the hospital without recovering platelets. They still have to come in to the hospital for clinic visits two to three times a week (see why there is NO WAY I could be a teacher this year?) and may require frequent transfusions. Once home, she will remain in isolation. It will be as if we have a newborn baby all over again. She will have a newborn immune system. The doctor says that we will be able to take walks with the dog, but thats it. She won't be allowed at restaurants, grocery stores, or even other people's houses. She will have all her immunizations all over again. Questions? Confused? So are we? But I would be willing to answer some of your questions if you ask them. A good teacher knows that once she has taught some information, you have to ask for questions, re-clarify information, and often re-teach. I'm willing to do that. If you have a question about what is going on, put it in the guestbook, or e-mail me. I will put together a Q &A for my next journal. If I don't know an answer, I have no problem asking a nurse or doctor for an answer. I'm not shy. Scary thing is that we heard much more information. That is just the gist of the information. There is oh so much more! With all that, I think we need to end on a good note--Allie ate peas, oatmeal, and peaches today. My students laugh at me during the food unit because I use peas as my example when discussing foods you DONT like. I detest peas. I think I hate them even more after today--they look the same in her diaper afterwards!!! So digusting. Seriously, who likes that stuff? Gross. An update on giraffe mania--we have had so many generous giraffe gifts. Allie's giraffe frenzy is growing! The nurses just laugh. She now has from Gymboree a onesie, pjs, a towel, a t-shirt, and a blanket. Andrew says that if anyone can find a hat that is her size, he would be so excited. Toy wise, she has a mirror with a giraffe, a Baby Einstein puppet giraffe, a Baby Einstein stuffed giraffe that plays Beethoven or Mozart (not sure which one), a giant giraffe that sings, a giraffe with a monkey hanging on it, giraffe rattle, two Sophie giraffes, giraffe pillow, giraffe beanie baby, and a few other things I can't think of now. Its crazy! But she loves it! She did playtime with Linda, her Child Life therapist. The two of them played with nothing but giraffes and had a ball. Allie is asleep now with her two Sophies and beanie baby giraffe from Josh and Joey. So content. Please pray that the upcoming days go well for Allie. Thank you for making it this far in reading tonight. I know that was quite a bit of information. I'm emotionally and mentally drained. I'm going to sleep with my girl. Please e-mail me jscott665@hotmail.com or post questions to the guestbook. Feel free to do any of your own research too. Goodnight. Jenny
Tuesday, July 6th-- 9:45pm--If I don't completely make sense tonight, it is because I am attempting to watch the Amazing Race and type this journal at the same time. Andrew will contest to the fact that I do not focus well when the TV is on. He has had full full conversations with me only to have me give him a blank stare and no response. I'm enjoying a quiet moment right now. Michelle took the baby out to the nurse's station. The two of them are playing and Allie is being passed from lap to lap. I don't mind at all and truly don't have much of a need to go and check on her. I trust Michelle. Allie's happy. Our floor had three new admits, but none of whom I knew before. Sam's room is still unoccupied (though Dana does NOT want to return to that room as it is too small--its the one we moved out of). We didn't hear from Jordan, so it looks like his appointment in the clinic went well. I talked to Sam on the phone, and he assured me that he would come and visit me on Thursday. Then Ethan told me he was going swimming. They were so cute on the phone--both very personable. Dana says they all all doing well at home. Oh, let me tell you a cute story about Julianna, the three and a half year old with ALL (Acute Lymphoblastic Leukemia--remember, Allie has AML-myeloid leukemia). I read on Julianna's website, www.caringbridge.org/tx/julianna that she got a new doll. Staci, Julianna's mom, told her she had to name her doll with a real name. Proud to say that the doll's name is Jenny, as in Jenny at the hospital!! That's a first for me--never had a doll named after me before. Allie had a wonderful day. She was happy and smiled the whole time. She only had a fussy meltdown with Jacob, the physical therapist. One of two reasons for the meltdown--Daddy's huge burp that woke her up (you know the kind, Mike!) or she was hungry. Dr. Goldman took her off TPN. She does have sugar water to keep her hydrated, but we are really trying to get her to eat. Jacob and I spent physical therapy time on the mat feeding her formula through a syringe. It took 35 minutes, but we did manage to get her to take an ounce. She was able to keep down both tylenol and bactrim, her dreaded oral antibiotic. Dr. Weinthal decided yesterday that she needs to try to take bactrim orally. My first response was, "does the man HATE me? She won't take it." Well, she did, surprising us all. We had to dip her pacifier into the antibiotic then give her the paci. Very tedious, but she didn't throw it back up like she used to. We also spooned fed it to her. Allie is responding to being spooned fed, but she will have nothing to do with a bottle. She still likes the formula, as she will eat it off a spoon or through a syringe. Only problem is that the syringe only holds 1ml. An ounce is 30 ml!!! She gets worn out. Allie's day was wonderful, but her counts were so mind boggling. Her white count went from 7,000 to 4,400 today. Her red cells and platelets were both low too. Dr. Goldman questioned her counts too. He thought it was puzzled that her sample had been diluted, so he ordered a second CBC. No, her counts were right. We are so confused, and so is Dr. Goldman. He says that it could be that her leukemia is taking over her marrow. She is now showing 4 blasts in her blood, up from 2 yesterday. When she starts chemo next week, she could be going in to it with more than 5% cancer. If so, her chances of being completely cured decrease. It could also be a special classification of remission that is called "Remission Without Platelet Recovery." Of course, we pray that is what it is, but we honestly don't think so. Neither do the doctors. No one knows what to think. She is stumping everyone, including the nurses and the doctors. OK, I have to stop and laugh right now. Allie is playing peek-a-boo in the window right now at me. Big smiles! Now Michelle is bringing her back in. I'll just have to hook up a new Baby Einstein! Back to the technical stuff. Allie's chemo conditioning is set to begin on Monday. She will get three new intense chemo drugs in this chemo cocktail. Very potent stuff. It will go for eight days, then she will have one day to let the chemo exit her bloodstream. Her transplant will be set for July 21st. One thing Dr. Goldman says is that no matter what happens this week, we are going to transplant. There is a sense of urgency with everything now. We have to get this leukemia wiped out and give her the chance of a transplant. The transplant is her only hope for life leukemia-free. Kelly, the transplant coordinator, came in with an information packet for us. They have chosen a male umbilical cord out of Duke University. Interesting thing is that they will be able to see the new cells growing in her body because its easier to tell with the different chromosomes. As for Andrew and me, we don't know what to think. Andrew is struggling with focusing at work all day. He hates being at home without us, but isn't ready to go to the hotel yet. He will probably either next week or the week that the baby has her transplant. We all need prayers. We are definitely in a state of absolute confusion. Here are a few new pictures of Allie from today. She tried a teething biscuit for the first time and LOVED it. She was filthy by the end of gumming on that thing and I had to strip her down and thoroughly clean her off! Love to everyone, Jenny, Andrew, and the mind baffling baby Allie!
Monday, July 5th--Back again 8:10pm--I know I said I wouldn't post again, but I can't resist these pictures. Andrew and I ended up at Valley View mall. We couldn't decide on a movie that looked good to both of us, so we just wondered around. Didn't go in to a single store except Old Navy, Gymboree, and Baby Gap--looking for cute dresses. We spent more than we intended purchasing a few things. At Gymboree, we found their giraffe line. Only problem is that the line is now discontinued. They had a perfect baby hat with giraffe antlers, but the only size they had was preemie. So, we went to the Galleria to check that Gymboree. They had an adorable giraffe print blanket and onsie that we couldn't turn down. What a spoiled child! Funny thing was that we ran into Dr. Weinthal at the Galleria. Andrew says, "Hey, I recognize that tall skinny guy coming at us." Sure enough, there he was. We said hello quickly and then went on our way. He deserves a good day off. He said that he was paged all through the night and this morning. He couldn't even get a good bike ride because he pulled over several times to return pages. He gladly handed over being on call to Dr. Goldman tonight. Now for pictures. If this is the first time you are checking the site today, see the update below. Allie had a great day today, but she still needs prayers. Our love to everyone. Dana--we MISS you and Sam!!! Its just not the same without y'all up here to visit with. The floor is sooo quiet with only Allie, Ted, John, and Nicki. That's it! Jenny, Andrew, and baby Allie
Monday, July 5th--Allie needs your prayers. 11:30am--Sorry for not posting last night. I was in a bit of a funk after watching the fireworks and trying to get Allie to bed too. We watched the fireworks from a dark linen closet up here on the 12th floor--a bit depressing for me. Though, we were able to see about six or seven different shows from our view up here. From Allie's bloodwork in the past two days, we are seeing indications that her leukemia is NOT in remission and is coming back. We are now detecting blasts, or leukemia cells, in her blood, something that could only be detected last week in her marrow. She is still not making any platelets. After her transfusion on Sat., she got a little "bump," but not much. Her platelets were at 56,000 yesterday morning. By this morning, she was at 14,000. I woke up this morning to her nurse, Anne, hanging her platelets up on her pole for a transfusion. That's something that will wake you up right away. The weirdest thing that Dr. Weinthal sees right now is a new emergence of monocytes. If you remember from about a week or so ago, monocytes are typically what appears first before marrow begins working again. They are kind of like the trumpets announcing the royal court (of segs, bands, and healthy marrow). The weird thing about this is that we saw these monocytes appear about a week ago. Now, she has 34% again, an unusually high number for this point of her treatment. What does this mean? We're not sure. And Weinthal is included in the "we." It could be that her body will begin to grow the good cells and the platelets. It could be that her leukemia is taking over and making her marrow and blood go a little haywire. As of now, to quote Dr. Weinthal, "It is what it is." That's helpful, huh? He is worried, that is evident. Unfortunately, with this disease, there is no clear cut answers. One child's leukemia is very different from another's. Sam and Allie have the same disease, but two very different treatments and results. We are at a wait and see period right now. He would like to wait and least 72 hours to see if her marrow starts making platelets. There is the possibility that we have another bone marrow biopsy later this week to determine exactly what is going on in there. We could start her conditioning for transplant (that's the mega chemo pre transplant) earlier. Only problem is, they don't have the cord yet with which they would do the transplant, so they can't jump the gun too quickly. As you can see, Allie needs your prayers. We don't know what's going on with her, but we pray so hard that her leukemia will not take over her body again. If it does, I don't know if they can go right to transplant. Another round of chemo then transplant could be lethal for her. You know how hard the last round was on her. Right now, the transplant is our best shot at ridding her body of the leukemia for good, but it needs to be at a low number to do it or we still risk not getting it all. I'm pretty damned scared. Andrew and I are walking on eggshells. Just seems like she can't catch a break. The good news here is that Allie's spirits are still very high. She has been playing, kicking her feet, and smiling like crazy. She gets to be unhooked at least once a day and goes into the hall. She even got to play with Sam and watch the fireworks with Dana and Sam Sat. night while I was at the play. That was a fantastic production. Sandy Duncan played Mrs. Anna, and she was incredible. I love elaborate shows, and this was definitely elaborate. Lots of bright colors and gorgeous costumes. Mom and I really enjoyed ourselves. Andrew called me on our way to the show. I immediately asked, "Is something wrong?" "Maybe only for you," he says, "Allie just said Daddy!" The two of them were playing on the mat on the floor. He thought she was looking so cute, so he decided to film her. She was kicking her feet in the air, but not babbling at all. Andrew zoomed in the video camera on her face. The two of them locked eyes, smiled, then she turns her head slightly and said, "Daddy!" On the tape, you can hear a very shocked Andrew ask, "What? What did you say?" Then the clip ends. He turned off the camera and played it back about four times. Then he went into the hallway and played it for Dana and the nurses. He played it over the phone to me. We all hear it clear as day. She hasn't said anything since though. Our floor had a bit of excitement yesterday. It was Mae's, Ted Wren's mother that I have written about who is always up here with her son, 77th birthday yesterday. On her daily run for Sam's fix of McDonald's french fries, Dana stopped off at the grocery store and bought her a cake. The nurses had also ordered one from the hospital. We went to her door with the cake on a cart and all sang her Happy Birthday. Sam then sang for her in Hebrew, impressing all the women around him. The other thing that happened was a code blue. An older lady had been given a room on our floor on Sat. even though she wasn't "one of us." There weren't any private rooms available at the time. According to Jasvir, this is a woman who has been in and out of the hospital with various problems. While Dana and I were hanging out in the nurses station watching Sammy push a cart all around the hallway (could have entertained himself for hours doing that!), we saw her call light go on. We knew that Jasvir had just gone in there. Her pulse ox monitor was at 66%. She was going in to cardiac arrest. Within seconds, we heard "Code Blue, female, 12th South" over the hospital intercom. People came from all directions. Literally within less than three minutes. Our nurses handled everything with such poise. I have a newfound respect for them after watching what they did yesterday. Sammy went home for two weeks this morning. He will be coming up for doctor's visits, but hopefully will be at home until July 19th. Please pray that Sam does well at home and doesn't have to be readmitted. The Eisenberg family really need this time together. Once Sam comes back, it will be at least four or five weeks before he gets to see his twin brother, Ethan. Dana and Dennis have to figure out how to juggle both kids and have someone with them at all times, plus Dennis having to work. It's going to be tough on them, so they need this time to be a family. Anne told us yesterday that Jordan is having problems with headaches at home that aren't getting better. We are very worried that he will be readmitted. Please say a prayer for Jordan too. He is coming up to the clinic tomorrow for his check-up. I pray that he returns home after the appointment. Since I just did a long post, I will not post again today. I think my mom is going to stay with the baby and Andrew and I are going to try to see a movie. Its been so long since I've been out in the real world, or even turned on a TV. I don't even know what's out at the movie theater. Thank you all for your concern for Allie. Please don't stop those prayers. As I've said before, we are riding the Allie roller coaster. Things change almost daily. She is sleeping peacefully right now after about two hours of playing. If you haven't check them out yet, click here to see the Katy Tartakoff pictures. We took many pictures, but these are our favorites that we ordered. Katy did a beautiful job. Have a great Monday for those of you who have the day off. I'm being spoiled by having Andrew here all day! Jenny |
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