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Week 14
Sunday, Aug. 8th--Day Twenty-Two
8:15pm--Ahh. A massage. Not just any massage, but one at the Cresent Spa in Dallas. You see, my good friend, Dana Eisenberg, generously shared her gift from her family so that both of us could get massages. Oh, it was wonderful! Thank you, darling Dana!
I came back all relaxed this afternoon. After an hour massage and some time in the hot tub, I was nice and calm. Then I walked in the room-CRAZINESS! Nothing like being nice and relaxed and walk in to screaming. Allie is not feeling well today. She is fussy, crying, and overall irritable. She now has a raging rash all over her body that Sindhu says looks to her like GVHD.
Let me explain the fine line that we are walking right now. We need the Graft. vs host disease to kill off the leukemia and have the donor cells get a chance to take over in her body. However, too much GVHD can be dangerous. It can go to the gut and cause major cramping and diarrhea (making yesterday's code brown sound like nothing at all). Children and adults have died due to GVHD. So, we are celebrating something that could be fatal to our baby. But, on the other hand, the leukemia IS fatal to our baby--no question about it.
Allie's white blood cell count is down again to 1,600. Dr. Weinthal says he is "guardedly optimistic" about this. If the leukemia is really growing strong, her white cell count would start skyrocketing. We don't want that. The XY chromosome test will be repeated tomorrow to see the percentage of cells in her body that are XY from the boy donor cord blood. If it is more than 7%, Dr. Weinthal says we may be able to continue this course without other medication for a few more weeks to see if it takes a better hold. If it is worse, we will need to make some major decisions. We will most likely have the results back on Tuesday, as we did last week. I would be pleasantly surprised if we get them back tomorrow afternoon, but I don't expect it at all.
As for me, I am a bit panic stricken. I struggle with praying right now. Not that I am losing my faith, I'm not. Its just difficult for me to figure out what to pray for anymore. I can't pray with others right now. I get all weird about it. I pray silently into Allie's ear, and that is all I can do. I know that God knows what is going on in my heart. He knows my prayers even if I'm not vocalizing them all right now.
Someone asked me the other day if I missed teaching. As busy as I've been here, I haven't had the time to focus on missing it. What I miss is the interaction with my students. I miss "my kids." I get so excited when a student sends me an e-mail or signs the guestbook. If I see the words, "Hi Madame!" it makes my day. If you are a former student of mine reading this right now, please drop me a line. I would love to hear how you are doing.
OK, here's a funny thing to end with. My mom is sitting rocking Allie right now while I am posting. Andrew just came flying into the room to collect some coins. "Sammy is doing his rounds selling stuff off his cart." He just made his return to the room. He bought a package of Saltine crackers for 85cents. Now he is going through things to put in Sam's cart. I think I need to join them.
Night all! Jenny, Andrew, and rashy Allie
Saturday, Aug. 7th--Day Twenty-One Three Weeks Post Transplant
10:00pm--Code Brown, everyone, we have a Code Brown in room 1203! Diarrhea explosion! Oh my goodness--if it wasn't my own child! Let me set it up for you to see. Andrew and I finally sit down to enjoy our Tin Star tacos for lunch. Allie is sitting in her Hop N Pop watching Baby Einstein World Animals. Out of the corner of his eye, Andrew notices something. "Oh no!" We look down under her chair and there is a PUDDLE of diarrhea that our child is happily stirring with her feet. Gross! We had to call in help, so I went in to get Sindhu, her nurse today. Major Code Brown. I changed Allie's diaper as Andrew cleaned the Hop n Pop and Sindhu had to change all of Allie's tubing--it was all covered in poo!
Today has been fabulous. We woke up to a very happy and bright eyed Allie around 8:30 this morning. Andrew went down to get the paper to see the article. We had actually stayed up last night with Dana to read the article, but we were anxious to see it in print. Dana and I read it together last night. I was sitting at the chair by the nurse's computer, and she read over my shoulder while we held hands. I couldn't have asked for a better moment. The story was beautiful. Everyone at the nurses' station gasped when we saw the picture of Cindy consoling me while I held Allie. That moment was right at the end of the photo shoot. He was asking me some questions about Allie, and I just started to cry. Cindy didn't want me to cry alone, so she stepped in to sooth me and stroke my hair. We thought Tom, the photographer, had put the camera away. So glad he didn't. There was also a picture of Allie on the front page of the entire paper. Andrew said it was strange to go retrieve a paper and see his child's picture smiling at him on the front page. I would really like to thank the Dallas Morning News, especially Jacquielynn Floyd, for writing such a heartfelt and moving article about the two bravest children in the world and two mothers that would do anything in their power to save them (plus, don't forget the awesome dads!).
Allie has not required any pain medication today. She has her moments where she will get too fussy and cry a bit, but she was very happy most of the time. She and I took a two hour nap together chest to chest. There is no better feeling. Her rash has increased quite a bit, so we are hoping that a battle is roaring in her body right now. Her platelet level was at an all time low--4,000. We usually transfuse under 20,000, but Dr. Weinthal wanted to hold off as long as possible. Giving a transfusion can be a form of an immuno-suppressant, and he wanted to push it since she wasn't bleeding. Hopefully, she got a decent bump and will not need another transfusion for a few days.
Dana and Dennis got to go out tonight thanks to a very special babysitter for Sam. My mom is in there having a blast! When I checked on them earlier, Sammy had a huge smile on his face. He had already listened to my mom's heart, given her two shots, and started an IV line in her arm. What a doctor! All without making her cry at all. I'm sure when he listened to her heart he was amazed. She has the biggest, kindest heart of anyone I know. Who else would take time out of caring for her sick grandbaby to go and babysit another sick "grandbaby?" She adores Sam, as we all do. If only everyone's hearts were as big as my moms.
Speaking of my mother's generosity--she opened her home for the next three nights to my new friend Summer and her three children. Summer is a member of my birth club who felt an immediate connection to Allie. On the day I posted about Allie's diagnosis, Summer felt compelled to help. She created Allie's Angels, www.rallieforallie.com. Unfortunately, the site is under construction right now after a huge loss of her files, but it will be up and running again eventually. Through Allie's Angels, we have had numerous donations. She has helped raise awareness for Allie. Since May, we have talked on the phone many times, often for more than forty five minutes at a time. Summer drove from Vancouver, Washington (right across from Portland, Oregon) with another woman Kyla with her two boys, baby girl, and Kyla's baby. They arrived late last night and will stay in Dallas with my mom until Monday before going to Austin for a while to visit Summer's family there. Summer came up tonight and got to meet Allie in person for the first time. As soon as she saw her, Summer burst into tears. Andrew said he felt an immediate connection to Summer and it was like consoling an old friend. Our sweet baby is so in tune with people's emotions that she cried a little too. Seeing others upset really gets to her.
Before ending, I would like to bring up the Light the Night Walk again. The Leukemia and Lymphona Society is helping fund some cutting edge research to find cures to these diseases. Light the Night is a simple two-mile walk where participants carry a balloon in honor or memory of a person that has battled leukemia, lymphona, or myeloma. Of course, in our case it would be in honor because our girl is and WILL BE living!! Light the Night walks are all over the United States. If you live in the DFW area, we invite you to join us in walking in honor of Allie, Sam, Jordan, Ted, and our other friends here on the floor such as Jimmy Williams and John Dispaquali (both have ALL) on Sat. Oct. 23rd at the Shops at Willow Bend in Plano. There is a link on the home page that go straight to the registration page. Our team name is 12th South Angels, and the team captain is Shay Sides. Shay works with Andrew at Reunion Title and she kindly offered to be the captain and organize it for me. It would mean a lot to Andrew, me and our families if you would be a part of this with us. I believe the registration amount to be minimal, but the more you can raise, the better. Our goal is to raise $5,000 for our team! If anyone is able to make a nice logo with the words 12th South Angels on it, please send it to me. I am looking to have t-shirts available for people to order. I think this would need to be done quickly so that people have enough time to order their shirts. Just thought it would be neat for us all to be uniform.
As always, we thank you for your support. We wouldn't be able to stay so positive without it. Having a child ill is the worst kind of pain. Knowing that there are other people helping carry the burden for us does make a difference. Andrew said tonight that he doesn't think we can call Allie "our baby" anymore unless the "our" includes all of you. The many faces I will never meet but who I will hold in my heart forever.
One more day before the blood gets sent off for testing. Please pray for those cells. Pick our your good cells and pray for their victory in this war.
Love you all, Jenny, Andrew, and our "brown baby" Allie
To give you a better idea of our day----
Friday, Aug. 6th--Day Twenty Post Transplant 10:25pm--Here's today--lots of screaming, lots of sleeping. Tons of fun! We don't know what's going on. She is showing signs of a rash. We are praying that is a sign that the graft is starting to fight the leukemia in her body. We just hope it isn't the leukemia hurting her and taking over her body. She was, for the most part, unhappy today. Now what is she doing? Playing in her Hop n Pop happy as can be.
She needed a red blood cell transfusion and will have a platelet transfusion tomorrow. We are now over 50 transfusions. Her white blood cells are down. Dr. Weinthal described this as a "semi-guarded, cautiously possible good thing." Leukemia is a cancer of the white blood cells. It is much better for the white cell count to be dropping than for it to be increasing. Then we would be in ever more trouble.
I am going to keep this short tonight. After today, I'm just worn out. Dana and Annie provided some much needed entertainment. The three of us camped out in the nurse's break room laughing and telling stories. We all need to get away for a little while. These walls start to get to you. What would I do without my sisters up here? I'd be very lost.
Be on the look out for the article in the Dallas Morning News. It didn't run today, but I heard it will be online starting tonight at midnight (that would technically be Sat., I guess). Thank you, Jacqueline and Tom, for coming and doing a story on us.
Please pray for our upcoming days. The BIG TEST is on Monday to see if the donor cells have grown more than their puney 7% from last week. We will also have a flow test down to see what percentage of leukemia they see in her blood. From there, we will decide our next course of action.
All our love, Jenny, Andrew, and the screamer, Allie Oh--Andy Crawford--I got your e-mail but haven't responded. I miss you! Please come see me! Thursday, Aug. 5th--Day Nineteen
10:15pm--I've had my moments of shear depression today. I broke down this afternoon sobbing to Andrew. My heart is breaking. My poor baby. Then, I look at my girl and it is hard to be sad. She gets upset more when she sees us cry. It agitates her. Her body may be having problems, but there is NOTHING wrong with her spirit or her soul. What a big heart in my little girl.
Leukemia blasts were found in Allie's blood today. No GVHD yet. If it doesn't happen soon, the leukemia may take over again. No, please, no! The 7% cells that is the donor need the chance to thrive in her body. Its like David and Goliath right now.
Dr. Weinthal spent a lot of time with us this morning. My mom, Andrew's mom, Andrew's sister, and us were all in the room. Andrew and I questioned him on his opinions of alternative medicines, myelotarg treatment, herbal therapy, etc. He was very honest and gave good answers (many of which I can't remember anymore)Dr. Weinthal is the lab and research guy. He told Dana that he has stayed up late for the past few nights about Allie. He said to us that he has several different options that he has looked into and would like to discuss with us next week. The thing I can see is that even though they are not optimistic about her chances, Dr Weinthal, Goldman, and Lenarsky are not willing to give up on Allie just yet.
We have had more e-mails in the past few days than the last three months combined. A question that has come up several times has been about our thoughts about St. Judes. St. Judes follow much of the same treatment as our team. In fact, Dr. Weinthal discussed Allie's case with a St. Judes doctor who agreed with her treatment. If we lived near that area, we would definitely be considering going there. However, our support system is here in Dallas. We would not be able to do this without our moms. My mom has been everything from my laundress to our babysitter. We need our friends and family too much. Our docs are willing to consider anything that we show to them. Weinthal told us today that if we print up research, he would be willing to take a look at it. I really do trust these docs.
Allie has had some very good moments. She is playing Zelda with Andrew right now. He had the controller up near her face. I burst out laughing when I saw her strain up over the controller to see the TV. The only place she wants to nap is on someone's chest. We are all humoring her. Today, she napped on me, Andrew, Frances, and my mom Sharon. At 5:30, it was just Andrew and me in the room with her. I was struggling in a depressed state and Allie was feeling that stress. She was crying in Andrew's arms. She would be okay so long as the paci was in her mouth. Only problem is that the little stinker has learned to pull out her paci by herself. So, she would pull it out, scream, then put it back in again. This vicious cycle lasted for thirty minutes!
Her weight is down. Her arms and neck are losing the chunk that I love so much. Less rolls. I love my fat baby! Without her TPN, she isn't getting as many calories. She stays well hydrated with her sugar water, but she is only eating eating oatmeal. Oatmeal is coming out the child's ears now. We're on our fifth or sixth bowl of the day. She gets frustrated that it doesn't come fast enough, so I have to alternate between spoonfuls and the paci. She takes a bites then takes the paci. Its quite a site to see.
As for other 12th floor news--I forgot to mention that Jordan went home on Tuesday! He has a clinic appointment tomorrow, and hopefully all is well. Sam was a bit wired today. Lourdes came into the nurse's station announcing that she had a dressing change done by Dr. Sam Eisenberg. He even told her to come back on Monday so that it can be changed out (dressings of central lines get changed every Mon and Thurs--Allie had hers done tonight). We are praying that Sam's mucositis can get some relief with an appearance of white blood cells. Baby Fieldon has been a handful for Annie today. He is seeing his first bit of mucositis. His cord blood transplant is scheduled for this coming Wed. Aug. 11th. Please pray for our friends and their children.
That's it for tonight. We gave Allie some atavin to help her sleep and her little eyes are drooping. She will be out soon. Thanks for the support. We need it! Goodnight, Jenny, Andrew, and our oatmeal princess Allie
Wednesday, Aug. 4th--Day Eighteen
10:00pm--My beautiful daughter is waving her arms in the air while playing her her "Hop N Pop." Apparently, no one told Allie the news from yesterday. This child is the most incredible person I've ever met. She has strength that is immeasurable. She is so vibrant and full of life. How could I live my life without her?
Today was better than yesterday. I have had several breakdowns, but I have also had moments of pure joy with my girl. We took a nap chest to chest for about two hours. We played, ate oatmeal and green beans, and even took pictures with a photographer. The story for the Dallas Morning News will include some pictures of us. The photographer--Tom was his name, I believe--was so kind. He said he got some really good shots and Allie and me. I just wish Andrew had been a part of it (though Andrew is just fine with having missed it!--he hates to have pictures taken). Tom said the article should most likely run in either tomorrow or Friday, most likely Friday, Metropolitan section. Keep your eye out for it.
I have to take a moment to talk to you about my birth club on Babycenter.com. I found out about this site from another pregnant teacher when I was only 9 weeks pregnant. Since then, I have been a daily member. Sometimes, I would just read the posts without commenting. Other times, I would offer my thoughts and opinions. After our babies were born in December, I think our board was even better. We shared pictures of our little ones, discussed various issues involving our babies, and supported each other through issues. Andrew used to tease me when he saw the Babycenter screen up on our computer. I was addicted!
Let me tell you what these ladies have done? I posted about Allie on May 6th, two days after diagnosis, to let them know our situation. Since then, they have been avid followers of our story. Today, I visited our board. The normal posts of "So and so did this (ie crawled, ate baby food, etc) was mainly missing. Andrew and I just shifted through about 75 threads on the board. I would say 75% of them involve our baby. They have done things from e-mailing talk shows to having a giraffe at the Dallas Zoo adopted in Allie's name. The support is awesome. We can't thank you all enough. Its hard for me to realize that my little girl is the center of so much activity, yet I feel so much love and comfort knowing all the people that are praying for us.
Being off the steroids and cyclosporine has improved her blood pressure. She is now showing normal readings. Lowest I've ever seen on her, in fact. It is the hope that she gets some GVHD to let the 7% graft donor take hold in her body. Strange as this sounds, we are praying to see a rash on her hands, feet, and legs tomorrow. Please pray for a rash! This would indicate GVHD. We will test her XY chromosomes again on Monday with results again on Tuesday. Our next option is to begin myelotarg. Myelotarg is a targeted therapy treatment. We did this for her in June, but this time would be at three times higher of a dosage. It is designed to go straight for leukemia cells CD-33 and blow them up. It would not kill the donor cells as they do not have leukemia.
Please keep your prayers going for our baby. Allie is not gone yet. Andrew and I have our moments of desperation, but we are still holding on to hope. We hope and pray to God that our little girl can be that miracle we are hoping for. We need her in our lives. I wanted to be two things when I "grew up"--a teacher and a mommy. I have lost one of those things. Today was the first day of school. Funny that the pain of that didn't cross my mind much. It didn't hurt me like I thought it would. Being a mommy is something I want to do for a long time. Being a mommy to Allie is the best profession in the world. She is my love, my gift. She gives us such love. We will love her all the days of our life. I don't know what our future holds for us. I don't know how long we will be blessed with our daughter, but I know that today was a blessing. Yesterday was a blessing. The past 7 1/2 months have been a blessing because they have been spent with Allie. What an angel.
Andrew is back now from the funeral. He is planning on living here in the hospital with us from now on. Andrew says that living in the hospital reminds him of dorm life in college. We wash our bowls in the sink. We go to a community fridge and knock on each others doors when we want to visit. I would not have made it through yesterday and today without Dana and Annie. They are my support system and my family. I love them dearly and know that I will love them for years to come. I just pray that our babies will be right there with us through every one of those years.
I am going to bed now. Andrew is going to snuggle her for a while, but I will most likely take over if she gets fussy. He is exhausted from the drive, so I want him to be able to sleep.
Thank you all. Your prayers are our power! Jenny, Andrew, and Allie
Tuesday - Aug. 3 Day 17
I don't even know where to start. First of all, this is Amie (Andrew's sister) typing for Jenny. No one here really wants to be typing this post, but it needs to be done and I guess I'll try my best. We got the news back on Allie's XY test and the results are not good. We were hoping for the donor cells to be at 50-100%, but instead there are only 7% donor and 93% of Allie's cells. The cells that Allie is producing are also showing the chromosome that is linked to her leukemia. They are taking her off steroids and cyclosporine in hopes that her 7% will be able to take over. Dr. Weinthal says that most likely, it won't work. We will test again in a week. The hope we have now is that GVHD will take over those cells and that the donor cells will increase in number. It is not good news, but Allie is in good health right now. Andrew and Jenny said that she has been in the best mood today and I am witnessing that right now. She just woke from a little cat nap and her face is bright and she is smiling at her daddy. How gorgeous she is!!! Please pray for some GVHD and that we can have a little hope. Now her Nana is fully entertaining her with a crazy dance and this girl is loving it all! We are sad and upset about this news, but are enjoying every minute of this angel girl. Keep fighting! Thanks to everyone for your prayers and positive thoughts for us....we are indeed grateful. -Amie, representing Andrew, Jenny and Miss Queen-bee Allie
3:40pm--I am trying to muster up the energy to post right now. Amie did a great job, but I felt I should write myself too. Andrew and I are devastated. When Dr. Weinthal came in the room with his "team," we knew the news wasn't good. He told us very honestly that he is not optimistic about her chances, and that she will most likely die from this. Oh my God!! My darling baby! She slept through the entire meeting. I just held her and cried as I listened to the doctors words. Andrew was shaking at my side and I truly felt my heart break. This was the worst news we've ever heard in our lives. Even worse than the news that she had leukemia in the first place.
We discussed doing this option of taking her off steroids, but we were given a few other options as well. Taking her home today and getting her on hospice is one. We just aren't ready for that yet. Maybe if it doesn't work. Honestly, Andrew and I are discussing not wanting to take her home at all. We have thought about keeping her here and comfortable in the hospital. How do I live in a home where my baby has died? Don't think I can do it.
Chemotherapy really isn't much of an option. Weinthal thinks the toxicity in the chemo would do nothing more than "hasten her death." We could look at doing myleotarg again, but it could cause an infection and serious pain without many results. Do we want to put our baby through that?? A second transplant is usually not effective. He said that if we considered this, we would need to do TBI--Total Body Irradiation. This could cause severe mental retardation, and the results are very dismal.
I'm numb right now. I've been crying for the last three hours. I'm tired, and my eyes feel swollen. Andrew just kissed me goodbye so that he could drive to Houston for his grandmother's funeral. His mom is going to stay with me tonight, and he will drive back tomorrow after the funeral. He needs to be with his family and say goodbye to his grandmother. He needs this closure right now.
As for Allie, she looks fantastic. She has been in a great mood today. Her blood pressure is through the roof, but she is smiling like crazy.
The thought of losing my baby is killing me. How do I live my life without her? I haven't given up completely, but I have become more realistic. I don't know what tomorrow will look like. I don't know how long she will live.
I can't write more. I can't think.
Monday - Aug. 2 Day 16
Jenny is on the couch with Allie sleeping on top of her, so I get the pleasure of writing a quick post. The XY test has not come in and will not come in until tomorrow. It looks like there was a backup in the lab and they can't get to it till later. Allie has had a great day! I have been here all day and she has been fantastic, plenty of smiles and laughs. I'm not sure if Jenny is going to post more tonight or not, but we figured that everyone would want to know the results (sorry there are none).
-Andrew
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