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Week 4
Sunday Night, May 30th--I'm typing from home! 11:05pm--That's right, Andrew and I are home. No, Allie isn't with us. My mom came back to the hospital this afternoon after a long nap and insisted on staying the night. She knows that this will probably be my last night to get a full night's sleep in a while. So, she is under strict orders to call me right away in case of problems, and she is spending time with the baby. I don't get to tell her enough, but she is an amazing mother. It's hard for me to tell her that sometimes because I choke up too much, and I am trying to avoid those really choked up moments as much as possible. It's hard too because she is my only parent alive now. She is my rock. She has gone through a lot in her life, but she has never failed to be there for either Jeremy or me. I can't begin to say how much I love her. Maybe this is my way of thanking her. Since I struggle with doing it in person, I can say it to thousands of people--Mom, you are the best mother I could ever ask for. Thank you so much for what you have done for us. Allie is lucky to have you for her grandma, just as I am lucky that you are my mother. OK, now that that is said, I can continue with my nightly post. My house is spotless right now! Kim Skaggs, a friend from church, had asked what they could do to help us. My suggestion? Get a team of people to come and clean our house! She truly took my suggestion to heart. There were 13 people (including two guys!) to deep clean the house. They mopped, dusted, scrubbed, organized, vaccuumed, etc until there wasn't a thing left to clean. It looks incredible! I don't think our house has ever looked so good. They took a picture of themselves have taken to calling themselves the "Merry Maids!" Thank you so much, Kim and everyone else. Y'all (can you tell we live in Texas?) did an awesome job! Thank goodness I decided over a year ago to start going back to church. Without their support, this experience would be even harder. Please do me a favor, if you get the chance to sign the Allie's Angels website, please let Summer Morris know how incredible she is. She has done such a great job with the site, maintaining the donations, and working with Christine Caselo on E-bay auctions (don't forget to bid and/or sell items, please!). I don't know that I would have reacted in the same manner if I had been in her situation. To give up my time and energy to someone who besides seeing posts from on the internet was a complete stranger? That is a person to be admired. Since then, Summer and I have had the chance to talk on the phone several times. It was as if we were made to friends. You think I talk a lot? Wait till you hear Summer and me on the phone! We have talked for more than an hour on numerous occasions. Tonight, I had a very special friend come visit me in the waiting room. This person makes me smile faster than most, and I was immediately happy at the sight of her. Leslie and Patti, your visit tonight was just what I needed. Thank you. Wow, this is becoming the "thank you" post tonight. Here's a bit about Allie--- Allie ate today!!! She managed to drink 15 ounces and eat three tablespoons of rice cereal. This is such a positive. Barring all major problems, we should be feeding her in a high chair come Tuesday night. Maybe we can even try something new like sweet potatoes. To finish for the night (since I am heading off to MY bed, not a hospital bed), I just want to ask you to continue signing the guestbook. Even if you have signed it several times before, right Alex M.? Reading those posts make me so happy. There are times that your words bring tears, and other posts bring hysterical laughter--God bless you Heather! We read each and every post that you send. There is not a message that I wouldn't want to receive. It makes me feel good knowing you are out there thinking of us even though we aren't allowed to see you. No pictures of Allie tonight. The camera is sitting in the hospital room. I promise to post some tomorrow. We need a good Memorial Day picture! Good night everyone. Love, Jenny
Sunday, May 30th--I missed a day! 9:00 am--Sorry about not posting last night. Since the isolation restriction was lifted, my mom stayed with the baby last night. She got to experience firsthand the crying fits in the middle of the night. She doesn't even open her eyes, but she cries so much, you have to get up to comfort her. I think Mom is tired this morning! Oh well, I got sleep! I woke up to a kiss from Andrew on the cheek at 7:45, not screams at 5. How blissful. Yesterday was a good day. My friend from college, Resha Barber, and her husband, Patrick, came in from Houston. They are visiting Patrick's parents in Paris, TX, but they drove in to Dallas on Sat. without their babies. They have two little ones under two years (yep, the babies are 12 months apart!). Their oldest, Aaron, was born at 25 weeks gestation at 1 lb 15 oz. He is such a beautiful little boy! Their daughter, Ainsley, is gorgeous too. It was nice to see them. Dr. Lenarsky recommended that we don't hug people often (that stinks because I love to hug people!) to avoid coming in contact with too many germs. Not an easy task for me. Here I am seeing a friend that I haven't seen since the summer and I can't even hug her! Allie's white count yesterday was 4,200. Dr. Lenarsky didn't seem worried that it was a bit higher than the day before. Her ANC was still zero. Today, we actually have an ANC. Her white count is back down to 3,100 and she had one seg, so her ANC is 31 (Remember to figure out ANC--Absolute Neutrophil Count, or the amount of "fight" she has against infection--you multiply the white blood count by the amount of segs and bands and divide by 100). Granted, doctors consider an ANC to be low when it is less than 500, so 31 isn't that much, but it is in the right direction. Dr. Lenarsky just did his morning check-up with us. He said he wouldn't be surprised if her segs again go away. The big positive of today is that her monocytes, what appear before the segs and bands, are up to 14. This is the highest they have ever been. Her hemoglobins (red blood cells) and platelets are again stable. This indicates that her bone marrow is functioning properly. If her bone marrow wasn't working, it wouldn't continue to produce platelets and hemoglobins and we would again be having more transfusions. The hard part is knowing that we are building everything back up to a healthier level this week only to knock it all back down with chemotherapy the following week. That just stinks. Dana Eisenberg told me that the second round is almost harder than the first because this time we have the knowledge of how sick chemo makes them. On the eating front--not much success. She has been taken off of TPN completely with only saline going through her lines right now. His plan is to reduce the saline today too. Eating rice cereal is still a good indication, but the bottles are still a battle. This morning, she got very excited when she saw the bottle, but as soon as she tasted the formula, she made a sour face and stopped. We have tried using our old bottles. Didn't work--the formula came out too fast and she choked. Andrew is going home this afternoon, so he is bringing back her normal Parent's Choice (Wal-mart brand) formula. We don't know if it will make a difference, but it is at least worth a try. For the most part, she is off all medications. She still gets bactrum, an antibiotic, on Mon, Tues, and Wed. They are wanting to send us home with an oral prescription of it too. That should be interesting given the fact that she vomits every time you try to give her oral medication. The plan remains for us to go home on Tues. after rounds. We have a cute going home dress--thanks Aunt Peggy!--for her to wear. We are getting so sick of the gowns. It was cute the first time she wore one, but they get real old, real fast. Andrew refers to the gown as "So big" because that is what it says under the whales and elephants. So, we are looking forward to getting rid of So Big for a week and wearing normal clothes! I may not post again today, depends on my mood tonight. If not, let me wish you all a great Sunday and Memorial Day tomorrow. Thank you for your continued prayers. If you didn't read about it yet, check out the information about the garage and bake sale Sat., June 5th by clicking here. Thanks!
Friday, May 28th-- 6:45pm--We have now been in the hospital for 25 days. It feels like so much longer at times, and I know that we will be here even longer still. Amazing how much you learn in 25 days. You become an expert very quickly and the lingo of it all sort of becomes second nature. Allie is waking up with screams in the morning. During the night, she woke up a few times crying, but she was able to put herself back to sleep. At five, she woke up with uncontrollable screaming. I got up several times to attempt to sooth her and give her the pacifier. As soon as I crawled back in bed, she would startle and scream again. So, at 5:15am, I was bringing her to bed with me. I've never been a fan of the family bed, but I didn't want to get up and down all morning either. I was able to get her to fall back asleep until 7, then she went back down at 8 for an hour. It was very fitful sleep. I just don't know what causes that for her. She doesn't scream the rest of the day, just going to bed and waking up. I guess I have been spoiled--she has never had sleep problems before. All new to me. We are contemplating putting her crib or pack and play back in our room for sleeping. I don't want to be crossing the house at all hours of the night all night long! I had a burst of energy last night, so I stayed up until 1:30 in the morning fiddling on the computer. Needless to say, I'm tired today. Andrew's company is hosting a garage and bake sale next Sat., June 5th. We are asking, maybe begging, for your help with this endeavor. It is a major undertaking for them, and we hope it will be successful. To find out more, please check out the donation information page. These people are sacrificing their time and energy for us. We are very grateful! Thank you so much, Angie McClure, for coordinating this. I really enjoyed talking with you today. Not taking bottles yet. Since they have lowered the amount of TPN she is getting, they are really wanting to see an increase in appetite. She doesn't have to be eating as much as she was before she was ill, but she does have to do better than what she did today (one and a half ounces of formula and two tablespoons of rice cereal, that's it). That is our prayer right now. Her blood count was steady and stable again today at 3,000. She didn't require a transfusion, but he is expecting at least one over the weekend before we head home. Her ANC is back to zero because the segs we saw the other day disappeared. According to Dr. Lenarsky, this is fairly common. He said they will appear, disappear again, and then they will come back and begin to double quickly. Kochumol was our nurse again today. Allie opened her eyes this morning, stared at Kochomol for a half second, and broke into a huge smile. Even though she hasn't been our nurse in a week, Allie has not forgotten her. We won't see her other favorite nurse, Marlene, until we return for our next round of chemo (knock on wood because that means we haven't had any complications at home). What we like about these women is that they treat Allie with such care. Marlene says she her philosophy of nursing is to treat each patient as if he/she were her baby, sister, brother, or parent because she knows that that person is someone's baby, sister, brother, or parent. I like that. I haven't posted any new pictures in a few days, so here are some to start off the weekend. If you have the chance, please donate for the garage sale and get out there next weekend. It means a lot to us! Thanks!
Thursday, May 27th-- 9:25pm--Another uneventful day. The most exhausting thing about this entire process is the monotony of the day. We wake up, see our oncologist, nap, take her temperature several times a day, etc. I usually nap with her in the afternoon because I get tired from the boredom. I have books to read and movies to watch, but my attention span is too short to be able to focus. That's okay, I don't need to be watching too much TV. I need to be spending my time and attention on that gorgeous girl. We got very positive responses from the TV segment last night. If you haven't noticed, there is a link on our front page where you can watch the piece. You have to sit through a benadryl commercial before it begins, so don't get too frustrated. I even got a post on the guest book that the kids in Europe watched it (without sound, but they got the general idea!) I miss them, but I'm so glad to hear that they are having a wonderful trip. Of course, they are complaining about the walking they are doing--funny that I warned them of that in September, but do I actually kid myself that much that they actually listened to me? Yeah, right. Good news! Dr. Lenarsky gave us an actual date on returning home. He said that we should be able to go home on Tuesday, June 1st!! So long as everything continues to go smoothly this weekend, we will be released after morning rounds on Tuesday. We will return to the hospital on Friday for a check on our blood counts and see if she needs a blood transfusion. After four solid weeks of living in the hospital, we are going to be more than ready to go home. Keeping a bag packed will be important while home. If she spikes a fever over 101.5, we are on our way back to the hospital. Should all go well, we won't have to come back until Monday, June 7th. Dr. Lenarsky is still very pleased with her progress. We won't be able to have many visitors while at home. Being immuno compromised, she has to be sheltered. I would love to go to church, but I will probably wait until after the next round. I don't want to do anything that would put her at risk. She is being weaned from TPN now, so we are hoping to see an increase in her appetite. Angela and I fed her rice cereal again tonight. She was fussing a little bit, so we thought to try. She flat out refused the bottle. As soon as the spoon came into view, she began kicking her feet and leaning forward. It is so much fun to watch her eat. We just laughed and fed her. Sam is doing well at home. He will most likely require a blood transfusion tomorrow (oh, the many joys of AML!), but his routine is quickly coming back to normal. He is loving and fighting with his twin brother, Ethan, just as before. We are so happy for you, Dana and Dennis, that things are going well. Checking on Sam is something I do every night before going to bed. He is such a sweet little one. The nurses were commenting to me on how "mature" he is for a three year old, very kind and caring. The prospect of going home has my spirits high. Only five more nights than I get to fall asleep in my own bed! Speaking of bed, I think I will be heading that way soon. Night and love to all, Jenny
Wednesday, May 26th-- Allie's was on the news tonight! 6:55 pm--The morning started out normal. She will usually scream when she wakes up, I bring her to my bed and we snuggle. I can usually get her to go back to sleep for a few more hours if she is in my bed. Today was no exception. We woke up at 9:45 when Dr. Lenarsky came in to see her. He was very pleased at her progress and how well she looks. She was all smiles for him too! The good news from that visit is that today she had segs! Her ANC is now 93, so that means her body is beginning to produce the good cells. He has decided to take her off one of her antibiotics, and they will begin weaning her off TPN tomorrow. He thinks that will help her develop an appetite today (though he commented on the fact that even without much of an appetite she sure is a big size!) He thinks that she will be able to go home early to mid next week for a break. During that time, we still have to come to the clinic here at the hospital to check her counts, and she still will need to be in isolation a bit. We won't be able to have too many visitors even at home. What an anniversary present for Andrew and me to be able to be at home with our baby. I couldn't When Dr. Lenarsky left the room, I had a phone call from a woman who handles PR for the hospital. Janet St. James, the medical reporter for Channel 8 news, had contacted her wanting to do a story on Allie. With the upcoming Memorial Day weekend, they wanted to do a story from the angel of the necessity of giving blood and seeing a child in need. Apparently, Mrs. St. James had gotten four or five e-mails from different people telling her about Allie. One of the e-mails I know for sure was written by Amie, Andrew's sister, and written like it was from me. Turns out that Dana Eisenberg was another one of the people that sent something to her. Sorry, Dana, a little bird told on you!! I was more than happy to let them interview us. So, we got another call at 10:20 that they would be here in thirty minutes! I hadn't even taken a shower yet. So, Vivian, the technician, watched Allie for me while I quickly showered and got ready. Felt weird since I haven't even worn makeup in three weeks. The interview went really well. The cameraman just kept commenting on how beautiful and photogenic Allie is. They asked lots of questions about her and her prognosis, and then she spent time asking about blood donations. Marlene, our nurse, looked up statistics for us. In three weeks, Allison has had 17 transfusions--7 red blood and 10 platelets. 17 transfusions in only 22 days! That is astounding. The piece ran on the five o'clock news tonight. They had great shots of Allie smiling and playing with Linda, our Child Life Therapist, as well as pictures of Andrew and me with her. They talked about the importance of giving blood and showed me answering about what I thought about the blood donations she has already had. At one point, she had me in tears (wouldn't you know that is the part they finished her segment with). Andrew is going to try to get the interview onto the website tomorrow night after working on it on his work computer, so be watching for it! All is well here on 12 South so far today. Allie is happy and feeling good. She was a bit overstimulated with the cameras and such here in the room. Then again, so was I! I didn't mind being filmed because it means that more people will learn about the baby. Maybe it will influence a few more people to donate blood. --Jenny
Tuesday, May 25th-- 8:30--Much better day. Much. I had a very needed meltdown yesterday, but I was able to pick myself up and move on for a better day today. Last night, Angela came to visit with the boys and Mike. She and I went outside to let me release a good cry. One thing she said that stuck with me was that if I ddn't take care of myself, I wouldn't be able to appreciate each daily blessing I have with Allie. I have to appreciate those blessings. After coming back upstairs and typing my journal, I remembered that statement. Before going to bed, Andrew and I listed all the things in our life that we are thankful for. Funny, they were the same things we were thankful for three weeks ago. Sure, our situation has changed, but the basics of our life have not--we still have a beautiful little girl, a loving marriage, caring family who love Allie and us very much, wonderful friends, and a sweet dog! Turns out that Dr. Lenarsky was out of town today working with sick kids in east Texas. We will see him tomorrow. These doctors are incredible. They work so hard, and you can tell that they truly care for their patients. I feel very confident in their care. I like having three different doctors. I don't feel the need for a second opinion because we actually have three! I told Goldman about my breakdown yesterday. The good thing that came out of telling him was him telling me to get out of the hospital today! I called my mom and asked her if it was possible for her to get off early. She came by 1:30 this afternoon and Andrew and I left the building! First, we went to Angela's house. As soon as we walked in, Joey jumped into my arms. Then, hard as it was, we went home. Every room in our house has something of the baby's. There are reminders of her in every corner. I tried to find a place in the house that didn't have Allie stuff, but I couldn't find one. There was even baby stuff in my closest! Isn't it amazing how one little person just takes over your life and home? And why is it that there stuff has to be so big? Seriously, the swing, the exersaucer, the high chair--those things are huge!! I spent quite a bit of time just loving on Brandy. She went crazy when I walked in the house. She was our first baby, so I know this is hard for her. Jeremy gives her so much attention, but it still must be hard for her to be without her parents. I've never been away from Brandy this long. We got Brandy at the end of my first year teaching, three years ago. I had been badgering Andrew for a puppy for a few months. He wanted one too, but he was a little more hesitant. I was up for Beginning Teacher of the Year for Plano ISD. I had one for my school and had become a top ten finalist for the whole city. Andrew told me that if I won we could get a puppy. I won on a Thursday night, and she came home on Sunday afternoon. She was the sweetest puppy. People comment on how hyper she is, but that is because she is a people dog. Once she gets over the initial excitement of having company over, she stops being a spazz. She has brought a lot of joy to our lives. So today, we let her hang out of the bed with us and played for about an hour. When Brandy gets excited to play with you, she makes sure she brings you a "present." Sure enough, while watching TV, and I rolled over to land on a half eaten bone. Brandy was sitting by me waiting for me to find it. At the house, we relaxed a bit and watched our favorite show, the Sopranos, on our Tivo (the greatest invention for TV junkies like me!). This has always been one of our favorite activities to do together. Doesn't matter how busy we are, we try to watch this show together. It was one of the best episodes of this season, so it gave us lots to talk about on the drive back to the hospital (helps take your mind off of your problems). All in all, today was a good day. Allison is back to being in a good mood. We haven't had to give her any pain medication today. She received a red blood transfusion in the afternoon, which included benadryl and tylenol. That helps her get a good nap in. Her white count was 3,100 and she was back up to 3 monocytes. Again, her ANC is zero. Dr. Goldman said that once we see some segs and bands, they will begin to double each day. With the building of the good cells, we will see a difference in her eating too. She has to be weaned off of TPN (Total Parenteral Nurtition) and taking bottles in order to go home. I just wanted to thank everyone for their concern after my breakdown last night. We all have our moments, and yesterday was definitely mine. Funny thing was that Dana Eisenberg next door said she was having the same kind of day. We talked for a bit last night about our feelings. I have really come to like Dana. I look forward to bumping into her while loitering the hallways. Marlene, our nurse today, said that Sam was asking about me and Allie this morning. He wanted to make sure that Allie's mommy wasn't still sad. It was so sweet. When I saw them tonight, he hugged me and then got a chance to see Allie in the window. They have finished their second round of chemotherapy and are heading back for recovery at home tomorrow. I will miss seeing Dana, but I hope they don't have to make a trip back up to 12th south, unless it is a social visit, until their next round. Continue to pray for Sammy. He is a sweet little boy and such a strong fighter, just like Allie. His web address is www.caringbridge.org/tx/sameisenberg. To finish off my post for the night, here are a few pictures:
Monday, May 24th-- 10:00pm--Today has been a hard day. Allie has had bouts of screaming since noon. We don't know if it is gas, coming off the fetanyl, or something else. Could be constipation too because of the rice cereal. She will be extremely happy and smiling, then out of nowhere, she will begin screaming. Instead of her normal wake up happy and cooing, she is waking up all through the night crying. She usually doesn't even have her eyes open; she just screams. To make matters worse, I am an emotional wreck today. Smiles have been few and far between from me today. Next to the days when she was first diagnosed, this has been the worst day for me. I have cried fairly consistently since about noon. Why was I crying? I think I finally had a meltdown. My students left today for Europe, I have been stuck in this room without much of a break for over eight days, I'm not getting much sleep, etc. I'm terrified at any moment that something will happen to Allie. I am terrified of the changes that are happening in our lives. Just three weeks ago, we just thought she had a very persistent cold. She woke up from her nap this afternoon screaming. I was so overwhelmed by that point that I couldn't even get up off the floor to go and get her. I was too busy crying for myself. I felt like such a terrible mother at that point because I couldn't even pick myself up off the floor to go take care of my child. I know the biggest stressor is being here by myself all day. I feel so alone sometimes. I feel trapped in this room. Andrew is going to stay here tonight with us and take the day off tomorrow. I think my breakdown today scared him. He hasn't been here as much because he has been running errands, working, and visiting with visitors in the waiting room. I don't blame him. If I could, I would be doing the same. We have Dr. Lenarsky starting tomorrow, so we are going to ask him about isolation. I still won't be able to have visitors here in the room, but at least I would be able to leave to walk to the pantry without putting on the "outfit." Andrew and I have been talking to our night nurse, Beth. The original reason for being in isolation like this was because they didn't know the origin of the rash. Since they have ruled out viral infection, I'm unsure of the need for isolation (and so is Beth). Hopefully, Dr. Lenarsky says it isn't necessary. That way, my mom can stay the night with her tomorrow night so I can go to the hotel with Andrew. I desperately need to get off this floor for more than twenty minutes!! Some moments, I can't believe this is my life. Andrew and I so looked forward to this baby being born. We would talk until late in the night about the baby, with our hands on our belly. She has been perfect since birth. She still is, but she now has this to overcome. It is heartbreaking to see your child in this situation. Makes me think I don't want to have any other children. I just don't think I can go through this again. I would be in constant worry, waiting for the bottom to drop out like it did this time. Today is the first day that I have actually felt anger. I am so mad! At one point today, I was throwing objects (things that wouldn't break and wouldn't bother the baby, of course). I'm not mad at anyone in particular, and I'm not mad at God. I'm just mad at the whole thing. It all just sucks! I called my students to wish them well on their trip before they boarded the plane. It was really a hard moment to hang up the phone. They passed the cell phone around to all the kids to talk to me. I asked them about what they were most excited about, and reminded the French students about some of the things we have learned in French class. Please keep them in your prayers that they have a safe trip and have a wonderful time full of great memories. I wish I was on the plane with them right now. That would mean that this nightmare wasn't really happening. I think the reason why this effected me so badly today is that it brought everything to a harsher reality. It made my situation true. I don't remember the last time I sounded so negative for such a long time. Andrew is trying to cheer me up right now by making up silly songs and making the baby dance. She fusses when he stops, so its working to make her happy. I think I just need a good night's sleep, and then I should be feeling better. I didn't really mention her condition today. All her counts are hovering around the same as before. She still has a ANC of zero and a white blood count of 3,500. They are hoping to see better results by the end the weekend. If they do, then they will consider sending us home. Please say an extra prayer for us tonight.
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