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Week 13
Sunday, Aug. 1st--Day Fifteen
10:35pm--We had a feast for dinner tonight. Dana, Annie and I pooled all our food together to create a huge spread for our families, the nurses, and Matt and Amy. We had PF Changs (delicious!), homemade flanksteak and corn casserole, three cheese chicken, and one of the best oriental salads I've ever had. We took shifts on who was with the baby and all had a wonderful meal. I got to play with darling little Emma Day after dinner. She is the cutest little thing! She is two and weighs the exact same as Allie.
White bloods are going mad in Allie's body. Yesterday, her cell count was 1,300. Today---11,000. That's right, 11,000!What in the heck is going on with our baby? Andrew and I freaked a little when we heard the news. We waiting anxiously for Dr. Goldman. He says that he believes it to be because of neupogen. This is a medicine that works to make your white blood cells regenerate. He was not concerned, though we are still leary. He ordered neupogen to be stopped to see what her body will produce on her own. The last time her white blood cell count was this high was when she had 50% leukemia. Surely that isn't it. God, please don't let it be it!!!
The XY chromosome test is tomorrow. We are hoping for 50-100% XY chromosomes in her blood. This would be the donor cells. Goldman says the only thing he would be shocked to see is 100% Allie chromosomes. That would be devastating. The test will be done at UT Southwestern, and we should have results by mid afternoon. Maybe I'll have to do an early post. Look for one around 5 or 6 tomorrow night. Please pray for us and that her results are good. We need good news!
The day itself went very well. Her blood pressure was much more controlled, giving us a considerably smaller amount of screaming fits. She smiled, played, and watched Baby Einstein. In total, she ate 7 tablespoons of oatmeal and a 1/4 can of peas today. Woo hoo!! They have stopped her lipids (fats) and are decreasing her TPN to help her with her appetite. Its drinking that is the biggest issue. I just don't know what else to try. Oh--and she slept three hours in her crib last night before coming to bed with me. Small steps, right?
On to Sammy--our poor friend is in so much pain. The mouth sores and mucusitis is reeking absolute havic on his system. He is on a fentanyl drip, but he still needs extra boots of it too. He cries out in pain. It hurts to see him. Please pray for him and for Dana and Dennis. Sam isn't expected to get much better until he has some white cell recovery in about two weeks.
Now for Jordan's family--as I have mentioned before, they have some financial difficulties. Tonight, my thinking is "What more could happen to this family?" Well, their house had a water main bust on Friday night and flooded the first floor of their home. They need new carpet (a cousin is coming tomorrow to look at it for them), new sheet rock, and several other things. My gosh.
Finally, Norma Katherine Scott, aka Sissy to Andrew's family, passed away early this afternoon. Her body held on for another week, but her mind has been ready. She told Andrew last week that she was ready to get up there to fight for Allie. Andrew was just telling Allie that one day she would meet Sissy---Andrew will do the introductions. Funeral arrangements are being made for Wed. Amie, Andrew's wonderful sister, will fly in from Utah on Tues., and she and Andrew will drive together to Houston for the funeral. Please pray for Andrew, Amie, his dad and stepmom, and his uncle and family. Pray that they have peace with her passing and that they are safe in their travels.
Hug someone harder tomorrow! Love, Jenny, Andrew, and Allie Kitty
Saturday, July 31st--Day Fourteen. Has it been two weeks already? Time flies when you're having....um, fun?
9:35pm--I spent an hour and a half tonight snuggling with my boyfriend Sam Eisenberg while his parents enjoyed a dinner celebrating Dennis' parent's 49th wedding anniversary. Andrew watched him first, and the two of them played with his trains. Andrew has become the master train builder for Sammy. Once Sam got a little fussier, Andrew figured it was time for a mother figure to come in and love on him a bit. Sam and I read books, talked about our dogs, and just snuggled without talking. It was so sweet. I have just fallen in love with that boy. Poor sweet little man is battling mucusitis bad. He just laid there and wanted to be held. He didn't talk up a storm like he normally does, but only offered one word answers to things.
Allie had an okay night. She woke up around 5:30 with my mom and played on the bed until 7:30 before falling back asleep. Before we arrived, she had a bit of a meltdown. Her blood pressure was through the roof...again. Poor baby. It causes her so much pain. She took a three hour nap this afternoon and woke up with a big smile. She and I played until she got fussy again around 5:30, so she napped for another hour. After 6, we couldn't figure out what was bothering her. She got atavin and fentanyl (just pushed into her IV since she isn't on the drip anymore).
I think I found the other cause of her discomfort--the arrival of her second tooth! I felt it for the first time tonight. Poor baby. Not only does she have to deal with the discomfort and pain of being a baby post transplant, but she also has to deal with the normal growing pains of just being a baby.
Her counts are up to 1.3 white blood cells. She has an ANC of 1053. The "Mask Required" sign has been taken off the door. Maybe that was what was freaking her out--she saw everyone's full face for the first time in two months! Dr. Goldman is still very pleased. One solution for her hypertension and high blood pressure is to switch her cyclosporine (anti-rejection) to being an oral medication. It is a very small dose, but it does not cause as many blood pressure problems. We are about to give her the first oral dose in a few minutes. We'll see how that goes.
Andrew is spending the night with us here in the hospital. He and Frances cleaned and organized the room with new bins. Dana, the organization goddess, will be so proud! They even cleaned out the crib. Within the next week, my goal is to get her to sleep in her crib at least part of the night. That would be nice! She and I have shared a bed for over two months. I am able to turn over in the night once a week--when I go home on Friday nights!
Specific prayer requests for tomorrow and the next upcoming days--
Sammy--please pray for pain management, little reaction to methotraxate (it is a chemo drug that he is taking instead of cyclosporine), and minimal discomfort. Pray for happy moments where he can enjoy being a three and a half year boy. Pray for Dana and Dennis as they have to watch their son be in pain. I can't tell you how hard it is to sit and watch idly without the power to fix it. And please don't forget about Ethan, Sam's twin!
Allie--We need blood pressure prayers. Pray for better results with the oral cyclosporine and reduction of steroids. Pray that her white cells in her body are NOT LEUKEMIA!! We have a test on Monday or Tuesday that will tell a percentage of XY chromosomes in her blood. We need this number to be high--that would mean the donor is taking over her body. Please pray for a little Graft Vs. Host Disease so that it can kill off any remaining leukemia. Pray for her eating. She will not allow a bottle or sippy cup near her mouth. Pray that she will sleep in her crib at least a little to give me a bit of a break.
Fieldon--(the four month old with the immune deficiency disease "Bubble Boy")--for his chemo to go smoothly without many complications. For his body to gain some weight and for him to drink from a bottle. For his two yr old sister, Emma Day, and for his parents Annie and Jack.
Jordan--He has been fever free for two days. Please pray that his fever stays away and he can return home Monday or Tuesday. Good news for Jordan--they did a bone marrow biopsy and found ZERO leukemia in his marrow! Thank God for that. Please pray for Amy and Matt as they are dealing with some financial difficulties.
Thank you all for your continued support. I am going to quote Dana from her last night's post: "I could go on forever just thanking the countless number of people who send their well wishes. You keep me strong. You give me hope. You reassure me that what I'm doing is the right thing for Sam. I thank you from the bottom of my heart and my soul for your words of wisdom and encouragement." I couldn't say it any better. Your encouragement keeps us going.
Love, Jenny, Andrew, and a little fussy baby Allie
Two new pictures for tonight--what do you mean this isn't how all babies watch TV?
Friday, July 30th--Day Thirteen
8:45pm--I'm typing from home listening to Andrew play with Brandy. My awesome mother is staying the night with the baby, and we have Brandy visitation for the night. Only one of our girls here at home, but it won't be too long before we have both our baby girls here at home. Andrew and I had dinner outside while the dog played and barked at the neighbors. My surprise for the night was that Andrew had our Katy Tartakoff pictures framed and mounted on our wall. Six 5X5 or 5X7's (three of each) in a long row down our hallway. On the opposite side is the big picture of the three of us (Allie looking straight, I'm kissing Allie's head, and Andrew is kissing the top of mine). We are now referring to it as Allie's Alley! How perfect. What a gift for me to see that tonight. What a man I married!
Today was another good day. A little more fussy because we have weaned her off fentanyl. She can still have some if she seems to be in pain, but she is no longer on a continuous drip. The plan is to begin to get her off most of her medications and get her to take others orally. He lowered her steroid level again with the hope that she gets a little (manageable amount) of GVHD to help kill off any lingering leukemia that is hiding. He took her off one of her anti-biotics, and reduced the amount of fats and sugar she is getting. She has eaten three times already today. She had half a jar of peas, and a big bowl of oatmeal that she ate over a period of about two hours. She eats like a little bird, opening her mouth and moving her head around. Its adorable. We tried some apple juice in a sippy cup, but she wanted nothing to do with it.
Her ANC is right at 500 today. She had 700 white blood cells, down only by one hundred from yesterday. This is not uncommon for it to drop a little day by day. In fact, it is considered to be quite normal for the counts to fluctuate a little from one day to the next. Her differential came back with a new category that read "Other cell types." What does that mean? Dr. Goldman explained that for the first time, he is seeing her blood making new red blood cells on its own. The "other cell types" is actually baby red blood cells. White blood cells come first (as they started to a few days ago), then come red, and last are the platelets. Platelets can take months. The record is Day 30 before seeing any kind of platelet recovery. Goldman spent time in the lab this morning with another doctor, Dr. Taylor, examining Allie's blood. As of now, he does not see any blasts. Allie's leukemia blasts, he says, are very distinct. What he sees is totally normal cells doing totally normal things. That's great news! Please pray that it continues following this pattern.
This afternoon, we had a reporter, Jacqueline Floyd, from the Dallas Morning News come to visit us. She had heard about us by an e-mail and was very interested in our story. She described it as one that "writes itself." Right as she started interviewing Andrew and me, Annie and Dana came into the waiting room too. They joined us in the interview. The thing is--our story is no longer just about Allie. It is that, but it is also about Sam, Jordan, Fieldon, our friends, family, and the countless strangers who have helped us. We tried to detail all the specifics of the generosity that has been shown to our families. We told her stories of people coming to see us, recognizing us places (Dana was "spotted" at a Mi Cocina once!), donations of money, blood, and food, and the gifts that get sent to us on a daily basis. She asked us if we ever felt exposed or bothered by having our life on the internet. No, because it was a conscious decision that we made. I don't think about the hundreds (possibly thousands?) of people who are reading on a daily basis. I write as if I am having a conversation with one of my closest friends. If I thought about the people, I might be a little bit more inhibited to express myself. She asked Andrew how he copes with daily life and handles everything so well. What other choice do we have--that's our baby. Allie needs us and we will do anything right now that is in our power to help her.
Jacqueline could also see the connection we have amongst each other. After Andrew left and Annie went in with Fieldon, she interviewed just Dana and me. Funny how there were times where we could finish each other's sentences. I have developed such a connection with these women, especially Dana. She has become like a sister to me, a confidant and good friend.
The interview lasted almost two hours. That what happens when you ask three moms how they feel about their beloved children. We can go on and on. With our permission, she is coming back with a photographer to take some pictures of us and the kids. I believe the story will run late next week or the following, but I will keep you updated.
The rest of the day was much of the same. For the most part, Allie was in good spirits. She is always a little more cranky when being weaned off fentanyl. Heck, I would be too--that's a strong narcotic. Just glad its not me with her tonight (sorry, Mom--I love you!). Frances goes back to work on Monday in Ft. Worth. She had taken the whole week off and has been staying in a hotel close by. It has been so nice seeing her and having someone else during the day. At one time, I had thought that I didn't want anyone coming during the day since I had people around at night. I take that back. It's nice having company during the day. Maybe my mom will be able to take some days (hint, hint, Mom) and spend some time with just Allie and me. That would be nice.
We are going to relax and watch a movie. Please continue your prayers. If all goes well for Jordan (fever free for 72 hours), he can go home on Monday. Fieldon starts his chemo conditioning Monday, and Sam is starting to get a little pain with mucusitis and mouth sores. These are to be expected, but they are still no walk in the park.
All our love, Jenny, Andrew, camper Brandy (home from Camp Murphy for a night!) and our narcotic-free angel Allie
Thurs. July 29th--Day Twelve
9:30pm--Busy day today. I got up, showered, and left by 9:15 to head off to the dentist. Quick filling, teeth cleaning, and I was off again. The hygenist was running a bit behind, so they asked me to sit in their consult room and wait. I sat and read an entire magazine in silence! No beeping, no crying, no nurses (don't get me wrong, I LOVE our nurses, but it was still nice), no OT, PT, or any other interruptions. Pure bliss.
I got to go to Camp Murphy and visit everyone's favorite camper--my gorgeous Brandy! Oh, I just wanted to love on her forever. She went totally spasdic when she saw me, and we played around each other for a few minutes before settling in on the couch. Brandy attempted to settle on the couch with me, but that would not work at Camp (though admittedly, she does go on our couch--remember--first baby!). The Murphy family has taken such care of our girl. She plays all day with Rocky and Penne, and also finds time to wrestle around with the three boys too. We are so very grateful to the Murphys for what they have done for our family. As Andrew reminded me tonight, being in this situation is showing us the best of people. They are truly the best! Thanks, Cheryl and Sean, for a wonderful visit!
Dr. Goldman told us yesterday that the record for a child to get an ANC over 500 post cord blood transplant is either thirteen or fourteen days. Today is Day Twelve, and Allie's ANC is 688!!! She has 800 white blood cells, with 86 segs and bands. Andrew and I naturally went to the worst case scenario--is this leukemia or good cells? Dr. Goldman says that there is no way that it could be the leukemia coming back. Its way too early. Doesn't mean that it can't come back, but he feels confident that this is not what we are seeing. He said he couldn't be more pleased with how she looks. He took her steroid level down from nine to eight, slowing trying to wean her off. If her white blood cells go over 2,000 by Monday, he will do a special blood test that will tell us the number of specific chromosomes found in her blood. If she has more XY chromosomes, we are good to go. XY chromosomes are male--her cord blood was from a male donor, so this would tell us that engraftment is taking place. Please pray for your cells harder than ever! We should have results from that test within 12-24 hours.
Goldman came back this afternoon to check on his "campers at Camp Cancer." His words, not mine. When he is in the room, you just can't help but smile. He is the kindest man I have ever met. He went straight for Allie, taking her up into his arms. He can't get over how big she is. I don't know how many times he has asked me, "How do you hold her with one hand? She's so heavy!" I just smile and laugh. Talent, pure talent.
Giraffe hat update--several people took the challenge with such spirit. Tanya, from my Babycenter birth club online, e-mailed Gymboree.com. The managers were so touched by Allie's store that they made it their personal mission to find the hat. After almost giving up, I hear they found it in Georgia. They would not let Tanya pay for it, but instead offered to send it to us as a gift. What a sweet gesture! Thanks for all that looked. I also heard that Kellie Mayhew, Frances' assistant and valued friend, sent her husband on the mission too. He too found the hat at a Gymboree in Ft. Worth. That's ok, we'll have to share one with Fielden next door. All babies need a cute giraffe hat!
Everyone else at "Camp Cancer" is doing very well. Sammy isn't eating now but is getting his nutrition through TPN and lipids. Jordan had his central line removed in hopes that was the cause of his fevers. He is still spiking fevers, so they think it was a source of some kind of infection. They implanted a new line in his arms. Hopefully, he will do better. Fielden begins his chemo conditioning on Monday, and his transplant will be ten days afterwards.
Have a good night! Jenny, Andrew, and one of the "campers" Allie
Here are my girls. You see pictures of Allie all the time, so Brandy needs some attention too!
Wed. July 28th--Day Eleven
8:30pm--If I were to rate today on a scale from one to ten, I think it would have been an eight. Good day. We took a three hour nap together, she played with both her grandmas, and we had lots of smiles. Her blood pressure was down for most of the day, but it did come up again this evening. She is getting vasotec, the new IV blood pressure medication right now.
Dr. Goldman says Allie looks absolutely perfect! She has 500 white blood cells, and he says there is no reason why she won't have more tomorrow. He has ordered for her CBC's to include a differential starting tomorrow. The differential shows the breakdown of the white blood cells. We are looking first for monocytes which arrive before the segs and bands, or neutrophils. Please pray for your cells. Of course, the fear is that these cells are leukemic cells, not the new donor cells. It will be a while before we will test her for leukemia. Right now, please just pray that healthy cells begin to grow in Allie's body.
We will begin watching more vigilantly for GVHD. This can manifest itself in severe diarrhea, rashes on the hands and feet, as well as a slew of other things. We want to have a little bit so that it can kill off her AML, but we don't want too much that it could prove to be fatal to her. The steroids are supposed to help control that. Dr. Goldman took her steroid level down from ten to nine. He will slowly over the next few weeks wean her off those--yeah, no more steroid face!
Dr. Weinthal came up this afternoon for a social visit on the floor. We had a nice conversation out in the hallway. He told me a little more about the Coblt conference study that he attended. The study was conducted over 5 or 6 years. It included 14 children, mainly infants, who did not receive TBI, Total Body Irradiation (what Sam got). Out of those children, there are several still leading healthy, normal lives. Now, 14 over 6 years is not a significant number, but it does give a little hope here. You have to understand, Allie's illness is very rare in babies her age. They said that less than one percent of all the children with any type of cancer will be Allie's age with Allie's disease. Lucky us to be apart of that one percent!
Allie showed signs of progress by eating a little bit of oatmeal and taking formula off the spoon! We were very excited to see her do that.
I'm closing early tonight. I'm going to relax and read since Allie is already asleep. Hope everyone is doing well. All our love, Jenny, Andrew, and Allie
Tuesday, July 27th--Day 10 (Only 90 more days left to count!)
11:30pm--I apologize for my tardiness. Allie is just now falling asleep and I've been out of the room for several hours visiting with Dana and Annie.
Yesterday was rough. Every once in a while, you have to cleanse your eyes with tears so that you are able to see a little more clearly. We were in a bad place yesterday. I frequent that place less often than you would think living in this situation.
We have a few other situations that stocked piled on me yesterday to add to those emotions that I didn't mention. Yesterday would have been my first day back at work. It was schedule pick-ups an the PAL students always help out. Any other year, I would have spent the day running around with the PALs helping with 6th grade tours, sorting papers, and eating pizza for lunch. Instead, I was contemplating the life of my child.
Andrew's grandmother, aka Sissy, is coming to the close of her life. We were told she will pass within the next night or two. We just pray that she goes with peace. Please say an extra prayer for her and Andrew's entire family. No death is easy. One thing Andrew feels at peace at is the knowledge of his grandmother's life. She is 83 yrs old. She has lived a full life. We can only wish that for our sweet Allie. Our life now changes our perspective on so many issues.
My cousin, Amy, is also very sick. Amy has lived a life in and out of the hospital. She was born with a rare disease that left her with no functioning kidneys. She has endured two kidney transplants and a serious of other health issues to beat the odds. She is now 21 yrs old and I love her dearly. Since Sat., Amy has been having severe seizures. They are unsure what is wrong, but they have discovered a mass on her brain stem. I am so scared for her and her family. My Uncle Mike is the closest person I have to my father. I look at him and see my dad. My heart is here with Allie, but it is longing to be in Indianapolis with Mike, Amy, Aunt Janice, and my other cousin Katy.
Please pray for our families as I know you will.
I believe your prayers helped me today. It was a different feel from yesterday. My two amazing mothers, Sharon (my real mom) and Frances (mother in law) spent the day with Allie and me. If they hadn't, my journal today would have been very different. They bring me a lot of comfort. I feel more security in their presence. Having both here means a lot. We joke about when one grandma leaves the room to let the other go in (usually because I have escaped into the waiting room resisting going back in). We call it "the changing of the grandmas!" Allie loves them both so intensely. Besides Andrew and I, they are the only two who can get Allie to calm down and relax enough to fall into a deep sleep.
Dr. Goldman is rounding this week. He was very worried about how I was doing. We discussed my thoughts and feelings. He told me that I need to talk to Dr. Weinthal. Weinthal went to a conference last week about cord blood transplants, and he discussed Allie's case with many doctors from all over the US. All of them agreed with her treatment. Turns out, the recent Cobalt study has shown that out of 14 infants with AML, 4 have survived without a single complication post transplant (roughly about a 30% range). Goldman was unsure of the other 10, but I am led to believe that they passed away. Dr. Weinthal had come in yesterday to see Allie, but we were both napping so he just looked at her for a minute and left. I'm curious to hear what he has to say. That's all I know about the study, but I will share more once I talk to Dr. Weinthal.
Sweet little Ethan Eisenberg gave his brother the gift of life this morning. Sam's bone marrow arrived post op around 10:30 this morning. I had the pleasure of being in the waiting room with Dennis' parents when Dana showed us the bag. At Sam's request, Dennis' father went to the cafeteria to retrieve Sam's second donut of the day. Lucky me that I got to take it to him. I opened his door, but did not enter the room. Sam was standing on the bed holding the transplant bag while Dennis was filming. As I closed the door, I heard Sam say, "Thank you, Desan (Ethan), you're the BEST!" I just stood there for a minute with tears flowing down my cheeks. Please, God, let this work for our babies. Thank you for Ethan and for the gift he gave Sammy today. When they are fighting at 16, Ethan will have this to hang over Sam's head, "Yeah, well, I saved your life so I should get the car tonight!" Can't you just see it?
Karen just told me that Sammy has declared that Allie and I are his girlfriends and Andrew is his boyfriend. Everyone is in love with this child. I hate that it will be several weeks before I get to play with him in the halls again. He won't be able to come our for a while.
Allie has 300 white blood cells today. We are hoping to see more and more begin to grow and that ingraftment is taking place. The steroids and nupagen are designed to help her speed up the process. Dr. Goldman says she looks great for being at Day 10. Her blood pressure is still the biggest concern and the thing that seems to be causing her the most problems. When it is high, she cries out in such pain. I hate to see her hurt so badly. He prescribed a new blood pressure medication that he believes will be more effective, but it takes a few days for it to really show signs of improvement. Until then, we just give her extra boosts of fentanyl to calm her down. She played quite a bit today with several big smiles. She would be sitting in someone's lap without any fussing, just holding that person. As soon as her Daddy's face came in to her view--BIG SMILES! No mistaking it--that girl is a daddy's baby.
Jody Royse--you are wonderful! Thank you so much for the wonderful meal and gifts for Allie and Sammy. I am so sorry that I was unable to see you tonight. I was fast asleep with Allie when you came. I would have loved to have seen you. Jody got Allie the cutest dolly. It is outfitted with a giraffe onsie and THE HAT from Gymboree in the preemie version (the one we were hoping to find in Allie's size). Andrew and I are putting out an APB--Someone find that hat! I walked in tonight to see her in Andrew's arms with the preemie sized hat on her head. Andrew called it her giraffe yamica (I'm sure, Dana, I have just slaughtered the spelling of that word, but you get the point).
I must apologize again to those people that have e-mailed me this week. My hope is that sometime tomorrow, I will respond to those. Please do not think I am ignoring you. It will take me several hours to go through them all, and I just haven't found the time and energy. With Frances here tomorrow, maybe I will force myself to sit down and get it done.
Allie's blood pressure is back up and she is starting to fuss. I am going to go to her now. Please pray that we see some ingraftment of the donor cells this week.
Love, Jenny, Andrew, and Allie Cat (who so desperately needs that giraffe hat!)
Monday, July 26th--Day 9
9:30pm--Today has been really emotional. Allison woke up screaming every ten to fifteen minutes from 6:30-9:30. She would fall back asleep, so long as I whispered in her ear and laid with my face up near the side of her face. I tried to move once, and she cried. At 9:30, we got up and rocked in the chair.
Dr. Lenarsky came in for rounds around 10. He is still worried about her blood pressure and her not eating. She didn't need any transfusions, just IVIG, which is a boost for her blood. She will get this every ten days or so for the next few months. After that, she will get it once a month for at least a year.
At the end of our conversation, I asked (my mistake) Dr. Lenarsky, "Do you think Allie has a good chance that this worked?" And I quote, "No, I don't." He said that most likely, she has a 10-20% chance to live through this without any further complications. While he hopes that she will survive, he really believes that the leukemia will come back. He isn't even sure the leukemia is gone in her body. As he reminded me, they are still treating her like she has a 100% chance. Talk about a crushing blow.
I called Andrew and bawled on the phone. He went to his boss and said he had to go and was here in ten minutes. We talked and cried. This is a reality that we were aware of, but it is scary to hear it verbalized so clearly. And no, I am not upset with Dr. Lenarsky having said that. Nor am I offended. I asked an honest question, and I got a very honest answer. Unfortunately, it just wasn't the answer I wanted to hear.
I went to Dana and Sam's room to talk to Dana and have a shoulder to cry on. It's good to talk to Dana because she is a mom "who knows." She knows the fear and anxiety. Sam has better chances than Allie, but it doesn't make it any less difficult. He's still her baby. We hugged and cried in the hallway, then she asked if we could get out of the building and go to Luna de Noche for lunch. Andrew watched Allie and a nurse watched Sammy while the two of us walked to the corner where the restaurant is. It felt nice to get out and walk. We had a really good conversation, ranging from our kids to teaching to family in general. By the time I got back from lunch, I was starting to feel a bit better. Thank you, Dana. I needed that more than you may know. Allie was awake and smiling with Andrew. The two of them had done thirty minutes of floor time on the mat and watched Baby Einstein.
Andrew left to go back to work and Allie started to get a little tired. Cindy, our nurse, came in a visited with me for over an hour. The two of us sat and cried for Allie and talked about the fears I was having. Today, Cindy was more than just a nurse for my baby. She was a friend, a counselor, and a nurse. We hugged and cried, talking about all the things in life I wanted for Allie. I confessed to her that even though I am happy for the other children on the floor and their progress, I am jealous. I'm jealous that my baby isn't doing as well. I hate this for my child. I'm angry. Since meeting Andrew, I've always known we would be parents together. A year and a half ago, this baby was just a thought, a hope. We were just beginning to discuss getting pregnant. We were still content to be just the two of us with Brandy by our side. Now, the idea of going back to being just the two of us scares me. I'm scared to live my life without her. I'm scared to think of having any other children. Either way, I don't know that I ever want to get pregnant again. I don't think I could go through it again. I remember someone telling me when I was pregnant that you love your child so badly that it hurts. Yes, it hurts. It hurts so damn bad I can't even breath. It hurts to look at her at times. It hurts to know that she hurts. WHY??? WHY OUR BABY??
Please do not think that we are giving up on Allie. We will NEVER give up on the hope of our baby's life. Never. We know that she is not a statistic. However, reality does scare us and we all have our moments. Today has been our moment. I walked out of the room a little while ago and came back to see Andrew and Allie on the bed talking. Andrew had big tears in his eyes. I asked what was going on and he said they were talking about all the things they would do when she gets bigger. Like what, I asked? "Oh, that's between us, isn't it, Allie?" I couldn't keep in the tears. Andrew and I just held each other and cried.
The rest of the day has been with Allie either crying or asleep. She is so tired. Her blood pressure didn't respond to the medicine, so I think they may consider something new starting tomorrow. Andrew is staying here tonight with us. He doesn't want to leave our side, nor do we want him gone. I think I am going to curl up with him for a few minutes on the couch before I go down for the night. I'm exhausted.
Please say extra prayers for us tonight. Oh--and pray for Sam and Ethan. Tomorrow is their BIG DAY! Ethan goes in to surgery first thing in the morning to harvest his bone marrow. Sam's bone marrow transplant should be sometime in the morning. Pray for Dana and Dennis. Not only do they have to worry about Sam and his transplant, they have to worry about the pain for Ethan. Please stop by their site tonight if you get a chance. There is a link to their site right on the front page.
Thank you everyone for your comments to Andrew in the guestbook. As always, I am the loudmouth spokeswoman for our family, but he is the backbone. He is the one that holds us together. I thank God for him and Allie every night.
All our love, Jenny |
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