|
|
|
|
     |
|||||||||||||||
 |
 |
||||||||||||||
|
|
Week 9
Saturday, July 3rd-- 3:45pm--I'm posting early today because I have a special night tonight. For her birthday/Mother's day gift, I had bought my mom and me tickets to see The King and I for tonight. With Allie doing well, we are getting out for the night and leaving her in the very capable hands of her daddy. Mom and I love to go see musicals together. She is one of the only people I know that get into them like I do. I ordered the tickets way before any of this started. Her birthday was the first week that Allie was hospitalized, so we never got to celebrate. I'm sure we'll have a good time. Andrew and I woke up around 8:30 this morning. I slept the entire night without waking up at all. It was nice to be able to roll from one side of my body to the other. Its the little things I've learned not to take for granted. I told Andrew last night that I was worried about how I would sleep without the baby next to me. He then offered to lay sideways with his feet in my stomach if that we help feel more like how I normally sleep. After complaining about it for two months, I finally got my hair dyed and highlighted too. Its brown underneath now with blond highlights. It used to be a light red underneath with highlights, though as Dana was reminding me, my roots were halfway down my hair! It was getting out of control. I've I have a wonderful colorist that always does a good job. What a coincidence it is that I'm married to him! During the day, Allie can be completely unhooked to her IV pole. She is off TPN for six hours a day in hopes of building an appetite. It hasn't worked yet, but we are still hopeful. We just had her out in the hall with the nurses. They all surrounded her. She had three of her favorites (missing a few of her other favorites who are off today) Michelle, Lourdes, and Kochumol. Michelle just finished a twenty hour shift taking care of Allie and one other patient. They were short a nurse today, so Michelle stayed after her night shift and now Lourdes is taking over early for her night shift. These ladies are such hard workers. We adore them all. Michelle wanted a picture of Allison on her camera phone. The baby would not smile because she just wanted to sit and stare at Michelle's phone. She got a few cute pictures of the baby, but none included a smile. Lourdes just brought me in some cherries. She knows that I like fresh cherries, even though we aren't supposed to eat them in this room (no fresh fruit or vegetables are allowed). I took them in the waiting room and shared them with Mae, Ted Wren's mom. Mae is a wonderful lady. She stays here every night with her son. She says that even though Ted is in his late forties, that's still her baby and she isn't leaving his side. Even though we had good news on Thursday, I feel like something is looming in the air. Dr. Weinthal is very concerned that she is not making platelets on her own yet. She just had to have another platelet transfusion this afternoon. She had only 12,000 platelets (normal is over 150,000). Next to her left eye, she has a dark red dot. This is a burst capillary due to low platelets. Her white count is climbing by almost a thousand each day, and she is losing red blood cells too. I'm always nervous to see her counts each day because things are always changing. Her ANC is still high, and she does still have segs and bands. It could be that her marrow is beginning to produce leukemia cells again. It could be that she just hasn't recovered fully from her last chemo round, but it doesn't look that way to me. This is exactly what happened the last time. This is why we have to move to transplant so fast. We have to do that mega round of chemo and then give her a new immune system. We have to wipe her slate clean and try again with all new cells. If not, there is no way her body can go without getting the leukemia back. Your prayers are needed. Please pray that her bone marrow begins to make new platelets and does not let the 5% leukemia cells turn in to a higher number. Pray that her white cells start to stabilize and not get over 11,000 (that would definitely indicate leukemia). Pray that she has a good week, infection free, so that she is feeling well going in to the chemotherapy. Pray for Sam. If all goes well, he will be able to go home on Monday until he returns for radiation and chemo on the 19th. It'll be a busy week on our floor. Sam has radiation and chemo and Allie has her transplant (Sam's transplant is scheduled for July 27th). Last thing, my friend, Summer has made t-shirts that have pictures of Allie on them that anyone can order at www.cafeshops.com/alliesangels. They only have shirts for women and kids so far, but I think shirts without the pink will be coming soon. Our love to everyone, Jenny, Andrew, and our big cheeked baby Allison
Friday, July 2nd-- 10:30pm--Results came back from flow showing that Allie has exactly 5% leukemia left in her body. That is remission. Right where we wanted to be. Per a request in the guestbook, let me try to explain the why for a transplant. Chemotherapy is the treatment. Each time she gets chemo, her counts drop low but are able to recover within a few weeks, as they are doing now. Now that she is in remission, they are going to do a very harsh round of chemo again beginning the week of the 12th. This "chemo cocktail" is so strong that it will wipe out everything, leukemia and good cells, that she has remaining in her body. It is so severe that she would never be able to recover new cells on her own. That is where the transplant comes in. It is going to be scheduled for the week of July 19th, but I'm not sure of the exact day yet. The cord blood transplant will then give her all new cells for her bone marrow. It will give her a brand new, leukemia free, immune system. It takes about two to three weeks to be sure that she doesn't get GVHD, or graph vs. host disease where her body rejects the new cells. She will be extremely neutropenic for a long time. Most likely, we will be in the hospital post transplant until at least the end of September. She can not go home until her ANC is up enough to where she isn't neutropenic, no fevers, off meds, and is eating (our current challenge with her). Once home, she will not be allowed anywhere outside of the house, not even for a stroller walk, except to go to weekly or bi-weekly doctor visits. This will be for at least a month to six weeks (or longer) after we come home. She will still probably need transfusions while being out patient and waiting to recover. Does that clear things up a bit? Its very scary and very detailed. We have to have the big "transplant talk" next week that is supposed to last two or more hours. They will give us all the information, including potential problems. She will have to have all her immunizations over again. That isn't so bad since she only had them at two and four months. A little different for someone like Sam. He is three and a half and has to have all of his over again. Today was a great day. She woke up smiling and really only fussed when she was woken up to have her blood pressure taken. Waking Allie up is a bad plan. She gets REALLY mad. She looked adorable, though I don't have pictures to post today. She even got to go in the hall for ten minutes completely unhooked to her IV pole. She was in between all medications, so Marlene lets us unhook her and bring her out. Everyone laughed and smiled with her and then she went back in to crash for a nap. That wears her out. Jordan went home today!! He is four weeks post bone marrow transplant and looking great. He is a bit disappointed about not being able to go out of the house. Fourth of July is his favorite holiday, and he has to miss it. He will be back to the clinic on Tues. It's going to be strange without Amy around. I'll miss her. Dana and Sam are hopefully going to get to go home for almost two weeks. Marlene says that after four years of working on the transplant unit she can say that she has never see a group of parents and patients become this close knit. We know most people on the floor. If one of us gets a meal or goodies brought in (thanks Cindy and Bonita for our lunch and dinner!!), we knock on doors to share it around. We are becoming quite a little community. I'm comfortable there. I am home right now while my mom is snuggling up to the baby in the hospital. This is my first night away since the night before the infection. Mike, Angela and the boys just left. We had a nice time. I'm signing off and heading to sleep in my own bed! Please continue your prayers for Allie. She needs to stay healthy this week to go into her week of chemo. We don't want her to get another infection before transplant. All our love, Jenny, Andrew, and our giraffe lovin' girl Allie
Thursday, July 1st--Biopsy Day 11:00pm--Back Again There is an energy that is so positive up here on the 12th floor. I'm tardy in my post because I have just spent the entire evening having a wonderful time. Frances, my wonderful mother-in-law, and I went to Pei Wei to pick up dinner while my equally wonderful mom stayed with Allie. Mike and Angela brought up the boys and we had a blast. I got a HUGE hug from Joey, their five year old, and oh, I loved it! After dinner, Angela and I went into the hall to head to Allie's room. Dana and Dennis called all of us in the pantry where they were waiting with a bottle of champagne. A nurse watched Allie while my mom came in with us. The story behind the champagne is very sweet and something I will always remember. Dana and Dennis bought it a few years back with the intention of drinking it in toast to Dana making remission from her breast cancer (Yes, I am talking about the same Dana that now has a child with leukemia. This woman is an incredible fighter who, as she puts it, as learned to "roll with the punches."). Apparently, they never drank the champagne, so it has been at their house waiting for the right occasion. That occasion came tonight! We all toasted to remission, including Sam with his carton of special milk (with a little mixture of protein, but he doesn't know it!). Sam asked me if Allie's cancer was gone like his. It was just a wonderful moment. Thank you, Dana and Dennis, for doing that for us. It meant more than I could express at the time. I will remember that moment with you in the pantry for the rest of my life. Angela came in the room around 7:30 only to find a sleeping Allie. Here she hasn't seen her in a month (due to some Josh being under the weather) and now the baby is sleeping! Keep in mind, Angela and Allie saw each other eight hours or more a day at least five days a week! They were napping buddies. Allie woke up after about ten minutes with such happiness. She smiled and flirted away with Angela. Michelle, our great nurse, agreed to letting us take Allie into the nurse's station. There is a window to the waiting room, so we decided to have the boys see her through the window. What a great moment. I knew it was hard for the boys to look at her and not be able to be right with her. She looks perfectly fine. Angela came back in the room with us (prompted by the fact that Allie pee'd through her diaper and on to Angela's shirt!) and was ready to saw goodnight when Mike called her from the waiting room. He offered to take the boys home (they came in two cars) and let her stay here in the hospital. I was elated! So, we spent the next two hours loving on Allie together. Andrew left at 9 and it was just us three girls. Normally, Allie doesn't mind people holding her for a few minutes, but she usually gets fussy and wants to go back to me or Andrew. You could just tell that she remembered Angela's arms. Angela held her the entire time. Allie finally fell peacefully asleep in her arms. It just filled my heart to see the two of them together. She finally dragged herself away from Allie at 10:30 because she knew she had to get to the boys. I still couldn't go to bed after she left. Allie was sleeping well in our bed, so I went to the hall where I got invited to hang out in Sam's room for a while. I got "shots" with alcohol prep and bandaids afterwards. Dana and I had a nice and relaxing talk in between the shots. It was the perfect ending to a perfect evening. I'm now typing this post and instant messaging Angela at the same time. We were just discussing our special night. Even though I described it above, it doesn't fully capture how perfect it was. What's the most beautiful word in the English language? REMISSION!! Of course, this does not mean we stop treatment. You have to see it through. Transplant will be our next big hurdle. She will be getting an entirely new immune system. If this works, and her body accepts the new cells, it could cure her leukemia for good. That's the goal, of course. As Dr. Weinthal puts it in his baseball terms, that's our homerun. Time for bed. For those that wait up each night, I'm sorry if I kept you waiting too long. I just couldn't bring myself to sit at the computer any earlier because it meant dragging myself away from my loved ones. Your prayers have meant so much to our family. Thank you for your love for our girl. She is truly an amazing child that is going to continue to amaze us her whole life (and it WILL be a long one!). Between the mega chemo cocktail, our love and faithfulness to Allie and each other, and your fervent prayers, we have come a long way in two months. We still have a long battle ahead of us with possible complications along the way (infect, graph vs. host disease where the body rejects the new cells, being neutropenic, etc), but it helps to know that we have you and GOD on our side. God Bless you all, Jenny, Andrew, and little miss leukemia kickin' Allie!!!!! REMISSION, REMISSION, REMISSION!!!
4:51pm--Thank you, God! Allie is kicking cancer butt! After waiting all day for results, Dr. Weinthal just left. Flow is still running a few more tests, but they are saying its 5% or less. To the naked eye, Dr. Weinthal says that she is in remission. She looks great, feels good, and has healthy cells generating in her body. He knows that she still has some residual left in her body, but we are at a great point. We will have the exact percentage tomorrow from flow. At this point, we are going to transplant. From what I understood, she has a week more to let her recover from the last round that was so rough and her infection, a week of chemo, then a cord blood transplant sometime during the week of July 19th. They are testing two American cords in the lab right now, and we will have results of those tomorrow too. I'm so happy and so excited that I don't know what else to say. I am going to post this now and post again later. Our love to everyone. Wednesday, June 30th--Goodbye June, hello July! 8:05pm--Energizer baby was back for more today! Andrew is trying to get her to fall asleep now because she has only napped for thirty-five minutes the WHOLE day! Not working. She has her legs in the air and is playing with one of her giraffes. However, she was so much fun today. We had a wonderful day of playing, smiling, cooing, and loving on each other. She was an absolute angel. She got to play with both her Child Life therapist, Linda, and a new physical therapist named Madeline. I know I probably should have tried harder to get her to sleep, but I was really enjoying her! It was the real Allie returned to me. I could tell we were going to have a good day as soon as she opened her eyes. Kochumol came in and picked her up to play. Out of habit, she was a wearing a mask. Allie didn't think the mask was necessary, so she reached up and ripped it off her face! Feisty as always. Sleeping is getting more and more interesting. Karen, our night nurse, says she is amazed that I'm not waking up more often. Karen has watched Allie flail her arm and smack me in the face several times. I usually feel it, but I keep my eyes closed and try not to move. If you move, than its all over. She likes to have a hold of some part of me (preferably the top part of my scalp, now that's fun) at all times. She holds my nose--making it oh so easy to breath while sleeping--cheek, shirt, etc. I normally have less than a fourth of the bed. And its a TWIN bed! I have always been a heavy, deep sleeper that needs my space. When Andrew offered to sleep with her last weekend, I struggled to sleep by myself. I, too, have grown accustomed to our nocturnal habits. Allison has an ANC of 3,485. Her whites were at 4,100 and her segs and bands were a combined 85. Weinthal dropped her down on her fentanyl. He is slowing trying to wean her off most things. Starting tomorrow, they are going to have four hour periods in the day where she will be off her TPN and lipids. This is in hopes that she will start eating again. She has no appetite right now because her nutrition is taken care of. We may have to reteach her how to eat from a bottle. We offered her a bottle tonight without any enthusiasm. She rolled it around in her mouth for a few seconds then spit it out. We then tried sweet potatoes. That got a bit more of a reaction, but still not too much. The bone marrow biopsy is at 8:15 in the morning. They will do it right here in her room. Dr. Weinthal will then have her marrow sent to UT Southwestern for the flowcytometry test. He can't put an emergency rush on the results, but he felt that we would know something before five. I promise to post right away the results. I am being cautiously optimistic. I am just hoping that this round did have more of an effect on her body than the last round. R-word would be fantastic, but I will be happy if she is less than 15% too. I just pray this round worked! I'm really terrified. Andrew is sleeping here with us tonight. I don't want to be alone tonight. I want him here with us, and he wants that too. Enough of sad stuff, how about a couple of pictures of that adorable baby? Oh yeah! She just fell asleep! What a great day. My heart is full. I am blessed in so many ways. She is definitely my biggest blessing. Please continue your prayers all throughout the day tomorrow. Check in around 5 (Texas time) to see if I've posted the results. Thanks for your support. Jenny, Andrew, our big blessing Allie **I'm rolling over laughing right now. I just asked Andrew for a suggestion about what to call Allie in my ending signature line, as I have called her something different every night this week. His suggestion was " our precious porker!!"
Tuesday, June 29th 11:25pm--Who would have thought I would ever enjoy a walk around Target as I did tonight? My mom watched Allie so Andrew and I could get away from the hospital for a little while. I think we stayed a little longer than we should have. Thanks, Mom! We picked up a few things for me, a cordless phone for the hospital room (I hate this hospital phone--it gets tangled in Allie's IV lines!), and a new toy for Allie. We looked for a shirt or dress with a giraffe on it, but couldn't find one. How many infants are infatuated with giraffes? Not the normal thing, I guess. Then again, is there anything very normal about Allie? Dr. Weinthal came in with lots of information today. Allie is no longer neutropenic. Her ANC tripled to 1,827! This is due to a high percentage of segs in her blood (a good thing). Her white count is 2,900. Right before the last biopsy, her ANC skyrocketed to 3,000. This was because she had 10,000 whites, but only 3 segs. The difference this time is that her segs are 63 today. Sorry, that's a bunch of numbers I'm throwing at you. Hope that just made sense. We just think we are seeing different things happen this go round than the last. Weinthal told me that he is very confident that she will have good results on Thursday. He is the one who really pushed for her last chemo cocktail of drugs. He felt it was best. Her platelets were down, so I asked him about that. He reminded me that mitoxantrone, the blue Smurf chemo, and myelotarg, the freakishly scary antibody with poison, both keep rearing their ugly heads well into week 3. She can still be experiencing some of those effects. He also felt that her infection may have been caused in part by myelotarg. Its some nasty stuff. Here's a scary thought for us--instead of waiting until the end of July or first of August, Dr. Weinthal told me he would like to go to transplant (results pending--we'll know for sure Thursday) the second or third week of July. In about two weeks or so!! Wow! That's a whole new realm of scary we haven't stepped into yet. The cord from Milan has been determined to be not the one they want to go with. There was something about it that he wasn't satisfied with. Weinthal runs the lab, and I wholeheartedly trust his judgment. There are a few American cords the lab will begin testing. I got a new purse today. Not just any purse, but a beautiful handmade one with a screened on picture of my beautiful Gerber baby! The fabric has Eiffel Towers on it. Two things I love--my girl and French! Perfect. I am posting a picture of it below. The lady who made it, Kathleen, made it as a gift. I had heard about her from someone on my birth club on Babycenter.com who had one made for her. I contacted Kathleen with full intent to purchase a purse. I told her the situation and how I thought this would be a great tribute to my daughter. She went on the web and felt compelled to do this for me. Kathleen, if you are reading, thank you so much! What a beautiful gift. I took it with me to Target tonight and saw several people staring at Allie's picture in the line to check out. If you are interested in seeing Kathleen's work and/or interesting in having one designed for you, check out her site at www.hannahedesigns.com Allie had a wonderful day. She laughed and giggled at me and Kochumol. She did not really want to nap. She took a few catnaps, but that's it--the energizer baby today. Since she slept all week last week, who wants to sleep this week? That's ok since she wasn't fussy but right before she took naps. She is awake right now in her bouncy. I'm telling you, she is fighting sleep like you wouldn't believe. Not fussing though, so I'm fine with it. She got to leave her room today! About six tonight, Kochumol helped us with her IV pole and we brought her to the hallway. She was the star of the show! The nurses all oohed at her, and so did some of the patients' parents that came into the hall. We took her to stand in front of Sam's door to look in. Weird for us to be the ones looking through the window and not the other way around. Dana exclaimed, "She looks great! Get her out of here" (meaning the hospital). If you were a spectator that didn't know better, you wouldn't have known she was in such critical shape last week. She charmed everyone with her smiles. I'm tired, no nap for me today. I tried to nap, but the energizer girl woke me up after only fifteen minutes. A quick request for you all--can everyone please stop and pray tomorrow for Allie, Sam, Jordan, Emerald, and Juliana (see my links page for their sites) and any one else you feel necessary tomorrow (Wed) night at 7pm? Doesn't matter what time zone you're in. Maybe if we send our prayers to God at the same time we can overload Him? Pray for her cells for the bone marrow biopsy. Pray for Sam to go home before he's in for the transplant. He is doing well, but I don't know when he will get to go home again. See Dana's post from tonight for full details, www.caringbridge.org/tx/sameisenberg. It doesn't have to be a long prayer. Just stop your activity and pray for our kids, with an extra prayer for Allie's big day on Thursday. PCBC people--this is right in the middle of Wed. night Bible study. I would really appreciate if you do this for me. Sorry this is taking so long and so tardy tonight. I've been trying to get the internet to post it for about twenty minutes (already had the nurses telling me my post is late, sorry Beth!) and the baby is having a meltdown. Over tired. I hope this worked. Goodnight to all our friends and family, Jenny, Andrew, and the energizer baby, Allie
Monday, June 28th 10:26pm--Sammy's back. He spiked a fever of 101.4, so they admitted him tonight. Hopefully, it is just viral and he does not have the strep bacteria infection that Allie had. That is the most common infection post high dose Ara-C. Please say an extra prayer for Sam!! Even with his fever, he was in high spirits. He told me several times that he missed and loves me. Boy can that boy tug on your heart strings. Dana special requested his special sponges he likes to play with, so I'm sure he will be in the pantry "cleaning" the fridge tomorrow. Dana says he gets it from her. She was organizing her garage when I called her yesterday. Wish I had that cleaning bug--no, I think ANDREW wishes I had that cleaning bug! Allie wasn't overly happy today, but she wasn't really upset either. Complacent is the best word I can come up with. She didn't fuss much except for diaper changes and right after she threw up. She was awake for several hours at a time, and took at least three hour or hour and a half long naps. She hasn't needed extra fentanyl, just the drip that she is on. She can also have a "boost" of fetanyl once an hour, but we haven't needed to do that since yesterday afternoon. I had to laugh that she didn't really smile big except for once today--when those stinking giraffes came on the screen on Baby Einstein!! Her whites were 2,100, giving her an ANC of 609 today. Dr. Goldman says he really feels we are over this hurdle of the infection. When's the next hurdle? Could be anytime. Her platelet count is 48,000, after the transfusion from yesterday. What we want to see happen in the next few days is her body making new platelets on its own without needing transfusions. A normal platelet count is 150,000 to 300,000. They are going to start to try to wean her off some pain medication and her antibiotics this week very slowly and she how she reacts. The bone marrow biopsy is scheduled for Thursday morning. Dr. Weinthal, who is taking rounds this week, and Dr. Goldman both came in to see us this afternoon. As soon as we saw them both coming in, we got a bit worried. They usually don't come together. Turns out that Goldman was just filling Weinthal in on what's going on. They decided that Thursday would be a good day because it will give her cells a few more days to regenerate more. I look for signs in everything that she does that tells me her leukemia is back. Now that I know that we have the test on Thursday, I'm griped with fear. She didn't like having her diaper changed today. When her leukemia came back, she screamed to be touched. I check her every reaction now. We are so much more guarded this time since the last time was such a disaster. Our results should be in by late Thursday afternoon, so Andrew tells me to try not to stress until then. Yeah, right. I'm a worrier. Can we please double up the prayers for her cells in the next three days? I need to know God is hearing our message. I'm getting desperate for my daughter. We had the most wonderful dinner from an extremely sweet lady named Bonita. Her daughter goes to the same school as Sam and Ethan. She brought food up for the Eisenbergs last week (we all really rely on food being brought up!) and met Mae, Ted Wren's mother, while Mae was eating crackers and peanut butter. She said something struck her and she really wanted to bring us all food. Amazing meal, Bonita. It fed me, Andrew, my mom, Jeremy, Matt, Amy, Justin, several nurses, Mae, April (whose husband has been newly diagnosed with ALL, wonderful lady), and several others. It was simply delicious. Thanks, Bonita! Thank was so generous of you! That's all for tonight. Time to snuggle Allie Love, Jenny, Andrew, and our chunky monkey Allie |
||||||||||||||
 |
 |
 |
|||||||||||||
