|
|
|
|
     |
|||||||||||||||
 |
 |
||||||||||||||
|
|
Week 12 **Meals needed--if you are interested in providing a meal to the hospital for our family (and we share with our amazing nurse staff!), please e-mail me at jscott665@hotmail.com. The kindest of our friends and family in regards to meal delivery is so helpful and we are very grateful. Thanks!**
Sunday, July 25th--Day 8 9:15pm--Welcome to the new and improved Scotthousehold.com!! My husband is the most incredible man. He has been working on this site for over a week now trying to get it to look just right. I think it is beautiful, honey, thank you. The first time I saw the banner of Allie pictures at the top of this page, it took my breath away. I love it!
Today has been another good day for Allie. She has been a bit more tired, taking longer and more frequent naps, but she has for the most part been amiable. Dr. Lenarsky didn't call her Blimpie again, just a "Budha baby." I can't argue with that one because I call her that all the time. She needed both red and platelet transfusions today.
Let me explain again about platelets. For leukemia patients, platelets are essential. They are the last to recover, thus requiring many transfusions. Allie gets platelets at least every other day right now. When her counts begin to show some cells, her body will still be without platelets. Even once we go home, they expect for her to have transfusions ever week to every other week, hospitalizing her just until her transfusion is complete. They only have a shelf life of five days, so we are constantly in need. It takes about two hours for platelets to be donated, but if you are able, please consider this for Allie. You can donate as often as every two weeks. July is the worst month for shortages at the blood banks. Even if your platelets don't go to Allie, I can guarantee someone will get them. Without these transfusions, we would have lost Allie three months ago.
I had some great visitors today. I was very anti being in the hospital room. Luckily, I had several family members able to stay with Allie while I escaped to the waiting room for a while. Andrew stayed at home getting the house organized and filing all the mounds of paperwork.
Our other daughter, aka Brandy the golden retriever, is at Camp Murphy again. The Murphy family has been keeping Brandy now for about a week. From what I hear, she is having a blast! Cheryl and Sean have reported that she swam in the pool this weekend. That's a first. She has two best friends, Rocky and Penne, who keep her very entertained and playing all day long. What kindness it is that they are keeping our girl. It makes such a difference for Andrew not to have to worry about her at home. Takes away our guilt too that she isn't being loved enough at our house. The Murphys will keep her for a while (they even made her a special "guest tag" for her collar with their phone number!). We are going to try to go there for visitation sometime soon. Cheryl, please give me a call when you get the chance. I miss my big girl!
Allie is asleep on my chest holding a hunk of my hair as I am typing. Surprisingly, she made it all the way through the night last night with only waking up once. It was probably my fault too. I came to bed at 12:30, and I think I was louder than I had intended trying to scramble over to my sliver of the bed. She opened her eyes and we played for forty five minutes before she crashed again until 8 this morning. She was up for thirty minutes before we crashed again for another forty five minutes. Playing takes us so much energy for her. Without the red blood (red blood cells carry the oxygen through the body), she is even more tired. Lucky me that the transfusion of red cells hasn't happened yet. Watch her wake up in a few hours rip roaring and ready to go!
Have a wonderful night. Please take a moment to post to Andrew and let him know what you think of the post. He really worked hard on it!
Thanks! Jenny, Andrew, and Allie
I'm calling this series of pictures "sleeping and steroids!" Her cheeks are a bit more poofed up due to the steroids.
Saturday, July 24th--Day 7--One Week Completed! 9:45pm--Just a quick post to let you know that Allie is doing well and to share a few pictures. She had another great day. She didn't nap at all today but for forty five minutes, and she has now been asleep since 7pm. I don't know what my night will look like. She may sleep all the way through the night. With all that has happened, her energy level is not the same. She requires a lot more sleep at night. Karen said to prepare ourselves for her energy to go way down, even during the day. The steroids can also make her very irritable. When she cries now, she arches her back and stiffens her body. That's something I've never seen her do before.
Before coming to the hospital this morning, we stopped off at our church to visit. One of my former students, Lindsey Barlow, coordinated with the church (and she isn't a member of our church) to have a car wash in Allie's honor today. As we were pulling up, I saw several of my kids. I rolled down the window and said hi. They all ran in to see us, washed our car, and visited for a few minutes. They had been out there for several hours (and it was hot today!) and it seemed to be a success. Thank you so much, Lindsey. I'm so proud of you for doing that. What a beautiful young woman you are! Thanks to all who came and worked today. It was great to see all of you! Her blood pressure is still the biggest issue right now. They give her blood pressure medicine and it goes down without minutes. However, it is back up a little over an hour or two later. Not that much help. She is also having a reaction to the medicine. Her face, arms, legs and belly all get extremely red. It gets reduced with benadryl. The doctor asked the nurse, "well, is she itching? If not, then its fine." She doesn't know how to itch! She does get more irritable until the benadryl kicks in. I will talk to Dr. Lenarsky about it tomorrow and see what he says. That's it for tonight. Please continue your prayers for this week. Oh, if you have e-mailed me in the past three days and haven't gotten a response, I'm sorry. I have been negligent about reading e-mails this week, and I promise to try to play catch up tomorrow in the afternoon when she naps. Thanks, Jenny, Andrew, and little miss blood pressure herself, Allie
10:45am--Andrew and I are discussing how strange it is that people actually care if I do or don't post each day. Three months ago, our lives were so different. We have always been happy with a good set of friends. In high school, I hung around my close friends, got along with everyone in class, but I was by no means a popular person. When I started teaching, it was strange for me to become one of the "popular" teachers, one that the kids really liked. I once told Andrew that I sometimes felt out of my element in that sense. Now? This is a whole new ball park. Let me explain why I didn't post last night--(Dana you would be quite proud and somewhat shocked at your "good Christian friend!")--I went home with Andrew. We hung out with Mike, Angela and the boys, and I had a little too much to drink. I told Andrew I was going to post last night. He asked me what I would say, so I told him I would type: I'm home. I'm drunk. Allie's good. Goodnight.
Andrew said that wouldn't work. He gave me a tylenol PM and I fell right to sleep. Feel fine this morning. I think the last time I had a little too much was about two years ago, or possibly longer than that, so I guess I'm entitled. We had a fun night.
Allie is doing great. She slept with my mom last night. Mom said this morning that she woke up at 4 am, picked up her Sophie (she knows how to make the giraffe squeak now) and began flailing her arms. She did this until 5 and then fell back asleep. She has been pretty happy (thank you, fentanyl) all week. Her counts are still rock bottom with no white blood cells. She had a platelet transfusion yesterday, so she doesn't need any blood products today. I expect by tomorrow or Monday that she will need another transfusion.
The steroids have made her a little bloated. As if she wasn't big enough, right? She now weighs over 24 pounds. Dr. Lenarsky is still trying to get her to pee off some of her fluids, but she hasn't had much of a result with the lasix. Yesterday morning, he greeted Allie with, "Hi, Blimpie!" Hey now, I know my kid is chubby, but BLIMPIE? That's really low. The steroid is also making her blood pressure through the roof. She has a standing order for blood pressure medicine if her top number goes over 150 or her bottom number goes over 85. As of this morning, her blood pressure is 148/75. That's very high for a baby. It could be causing headaches for her, but of course, we don't know. We tell her she just needs to use her words and tell us what's going on, but she hasn't followed our advice yet.
This upcoming week is a biggie. We are hoping that she doesn't have too many complications, but she may. GVHD may start to appear when when her donor cells start trying to grow. Diarrhea, vomiting, bleeding, all might occur. They will watch her levels of everything through her daily CBC's. They modify doses as needed. She is starting to have mouth sores which could be going all the way down her GI tract. The fentanyl drip helps reduce that pain. She has lots of anti-meds to keep her from getting anything (fungual, bacterial, viral, rejection). I remember when medication for our baby was so much simpler. We laugh at how naive as first time parents we were. She was such a gassy baby, so we gave her mylecon at every bottle. I remember calling the pediatrician's office worrying that we were giving her too much. Please. Mylecon is nothing. She's had some of the most toxic drugs you can give a person.
Do you remember how you took a cell to pray for right before the bone marrow biopsy? Well, if all went according to plans, your cell is dead. Gone. Killed off through chemotherapy, never to return again. Now, I need you to take a new cell. A new one from the donor to grow in Allie's bone marrow. Pray that they are powerful enough to kill any lingering leukemia cells, that they grow in Allie's body, and that they do not cause her too much GVHD (graft vs. host disease). Pray that these new cells will never need to be killed off with any chemotherapy. Pray that these cells grow so well that we can watch our baby learn to walk, go to kindergarten, go to prom, graduate high school and college, get married, have babies, etc. That these cells give her a long a fulfilling life.
Andrew and I would like to thank everyone who has done something for our family. We've had gifts for Allie, gift certificates for restaurants, blood donations in Allie's name, meals, so many things from so many wonderful people. I wish I could send every single person a thank-you note, but I know this is impossible. Please know that if you have done something for us, we are very grateful. We now understand that Allie is not just our baby, but she is everyone's baby. She is your baby too because you have come to love her. You have prayed for her (thank you, thank you), worried about her, celebrated her successes, and cried for her pain. You have become apart of our lives just as we have become a part of yours. Thank you all so much. We're heading back to hold "our baby." I pray that our day continues with happiness.
All our love, Jenny, Andrew, and the chubby (but not blimpie) baby Allie
Thursday, July 22nd--Day Five 8:45pm--I'm gearing up for a long night, so I am going to make this a super quick post. She slept until 8 this morning and has had three hours of naptime! It could be ugly.
Dr. Lenarsky says that Allie couldn't look any better right now. He is very pleased with her progress as of now. Starting today, she is getting double the dosage of steroids, which is according to their plan. Some children do not tolerate that much steroids, so they will watch her carefully. Her blood pressure will increase, but it can be decreased with medicine. She didn't require any blood transfusions. She has been needing at least one of either red or platelets, usually platelets, on average every other day. I think she has had over 45 transfusions so far.
I've been very BORED today. Just stir crazy. Andrew went out for a little bit tonight. He did come by before and after though because he hates to be away. I think I'm having an I hate the hospital moment. Just wanting to be home. With as good as she looks, I have fleeting thoughts of unhooking her and making a run for it. Any more tickets to Xanadu, Dana? I might join you and Sam. I have something in the pit of my stomach (anxiety, fear, ache for my girl) anticipating something bad. I know this isn't a healthy thing, but if you had sat in the "doom and gloom" meeting with Dr. Goldman, you would be on guard too.
On a more positive note, Allie and I have done nothing but played or watched TV (I insisted on Mama TV time too--Andrew and I are Big Brother addicts!). She has been nothing but sweet. No crying, fussing, or even many frowns. What a baby she is!
Goodnight all, Jenny, Andrew, and Allie
Wednesday, July 21st--Day Four 11:30pm--I don't remember the last time I had this much fun on a girl's night out. I just walked back in from the most entertaining, hilarious, heartfelt, wonderful dinner with 11 awesome women. Dana invited my mom Sharon, my mother in law Frances, and me to dinner with some of her friends and her family. Her Aunt Sue, aka Aunt Shoe from the boys, and cousin Jill were in town visiting. We have been looking forward to this dinner for a couple of weeks now. Jill and Sue are my daily source of entertainment. I read their postings on Dana's guestbook and just smile from ear to ear. Cordial hellos and hand shakings would not work to meet these ladies. We embraced like family. I thought they were great women before--now I know they are phenomenal! What a pleasure it was to spend an evening talking with everyone at the table. Kristen, Dana's good friend and mother of two (including "Jake the Giant Baby," Sam's biggest competition for Allie) sat next to me. I so enjoyed talking with her about funny, whimsical topics, as well as serious topics about the baby and life. What a kind person she is.
We went the The Mercury Grill on Forrest Lane and Preston Rd. Excellent, excellent food! I'm stuffed! We laughed, talking over each other at most times. We told stories, and met new people. Odie, Dana's friend, came with yellow wristbands in support of Lance Armstrong. All proceeds go to research for childhood cancer. We all passed the bracelets around, with Dana and I joking that they were the "my child has leukemia party favors!" I know, bad humor, but what can I say. It was after the wine started flowing. It was hard to drag ourselves away. Too much fun. Andrew had been expecting me back around 9. At 9, I called him to say I thought dinner would be served soon (the dinner started at 7!). Dana and I hugged and walked arm in arm all the way back up to our penthouse suite. When we arrived, we got the report that mine was asleep while hers was still awake. Dana promptly hooked her arm in mine, turned around and said we would be back in a few hours! Don't think we would have gotten away with that! Oh? Did you want to hear about the baby?
Well, let's start with our adventure last night. If you recall, I finished my post so that we could play. We played, and played, and played! It was 11pm when I finally pronounced playtime over and time for bed. Yeah, right. If you know Allie, you know that Allie doesn't do anything Allie doesn't want to. When I picked her up, she exploded poop! Diaper change quickly in order. I cleaned her rear and took her diaper off for a split second. With Allie, that is a serious risk. I lost that one. Pee was up in the air in a flash. I called Michelle at the nurse's station. Over the intercom, she asked, "May I help you?" I responded, "Yes please!" Michelle and I got Allie all tidied up, and we expected her to crash. We didn't know how wrong we were. At 11:40, I called Andrew laughing that she was in bed, feet in the air, squealing. At 12:15, the humor of it all started to fad, and I was ready for her to sleep. Michelle gave her some atavin, anti-nausea medicine that usually makes her sleepy. Nope! At 1, I rolled over and said I was going to bed. Michelle came in right after to find Allie with her pulse ox monitor in her hands (should be around her big toe) and her sock nowhere to be found. Allie was so proud of herself. Michelle and Allie rocked together in the rocking chair while I slept. They rocked for an hour with Allie just playing with her hands. She gave her two fentanyl "boosts," but still no effect on the energizer baby. At 2, she came back to bed and was screeching and squealing with delight at her feet then kicking me in the tummy as hard and fast as she could. Playtime was not so fun any more. I was getting near my wits end, begging Allie to go to sleep. Michelle and I joke that Allie has a switch that only she has control of. All of a sudden, she flipped her switch off, crashed at 3 and slept until 9:30.
Today, she has been awesome. Frances came at 11 to spend the day. We had lunch brought in, visited with friends, and even got Allie's favorite daytime diversion--Daddy on lunchbreak! She didn't nap by two times for only forty-five minutes. Wouldn't you know it that the little stinker has been asleep for Andrew since 8 tonight? AAHHH!! What a turkey! I told Andrew if she wakes up at 1am wanting to play, I am NOT going to be so receptive. If only her ANC was higher than zero (it will be zero for a few more weeks too), or I would have just sent her out to the nurse's station with Michelle. Wouldn't be the first time! I digress--back to Allie's day--she played with Jacob and Linda, rocked with her Nana and stayed very content all day. She never fussed once. This child is truly Super Baby! Well children don't do as well in a day as Allie does most times.
On to the technical stuff--Dr. Lenarsky is very pleased with how she is doing. They have to play around with her dosage at first to make sure they have the right amount for her. He increased her vancomycin (antibiotic), and cyclosporine (anti-rejection make Allie crazy medicine). Her blood pressure was up again, so she needed medication for that. They say that is very normal for someone post transplant. The vancomycin gives her "red man syndrome" where her cheeks, arms, and legs redden up. A little benadryl fixes that up right away.
That's it for tonight. I may have to give Allie a boost of fentanyl just to keep her sleeping through the night. She needs the sleep to have another great day tomorrow.
I just re-read my posting. If you didn't know better, you might think I'm tipsy. No, only one glass of wine about three hours ago. Just hyper and happy. Now, Dana on the other hand.....hmm, I'll leave that for her post. I'm still laughing from tonight. Everyone needs nights like that every once in a while. Its been too long.
To the wonderful women from tonight---Thank you!!!! It was such a pleasure. Jenny, Andrew, and Super Baby! I'm such a picture freak! Here are the latest:
Tuesday, July 20th--Day Three 10:00pm--Allie is playing on her tummy on the mat right now while I am typing. Beth is on the floor with her playing (even though Michelle is her nurse--Allie had both of them in here playing with her a few minutes ago). She is trying so hard to crawl. She sticks her butt in the air and stretches out her arms, but she can't figure out why she isn't going forward. What strength this child has. If I was in the hospital with leukemia, you better believe I would be in bed complaining, not up trying to learn to do new things. That's the thing with Allie--she doesn't know she's sick. She gets cranky, but she has no comprehension of what is going on with her. She won't remember this later in life. That is one of the reasons I so diligently write this journal. One day, my sweet darling, you will read this and know what Mama and Daddy and everyone who loves you so did for you.
We've had a much better day. Just a few fussy moments, like when the tech came in to do a chest x-ray and woke her up too early. That didn't make her happy. Not too many smiles, but much more content. She has played on the floor with her blocks for several hours today. Her temperature has not gone over 98, and her blood pressure is a bit more stable. We feel it is safe to say it is due to medication, not an infection, but they are still culturing her blood to be sure. Sam started his first day of TBI-Total Body Irradiation. He has to be sedated twice a day for four days to have this. You can read Dana's whole description of it on their site www.caringbridge.org/tx/sameisenberg. I know this is hard for all of them to be going through. At the same time, I am thankful that radiation is one thing that Allie doesn't have to experience. Sam was out tonight at the nurse's station entertaining us all. That child is so smart! He knows everyone's names, the names of his medications and when he gets them (ie Bactrim is Mon, Tues., Wed.) and where things are located in the nurses station. Matt, Jordan's dad, asked me how Allie was doing and Sammy responded, "Good." No need for me to respond, Dr. Eisenberg already gave his diagnoses! It was too cute. Jordan came out into the hallway tonight. He really looks good. They now believe what he has is GVHD. They are treating him and hoping he will be better soon. It was nice to see him out in the halls. From what I heard, Fielden is doing well too. Annie's sister, Robin, was watching him while Annie got to go home and be with the rest of her family. They seem to have a lot of support, which is so very important up here.
Food is everywhere!! We've had so much food brought up that the nurses don't even worry about bringing dinner. Thank you so much to all who have brought up a dish or have signed up to bring something in the future. We currently have meals lined up until the end of Aug., but we are now scheduling lunches too. I can't tell you how much of a hassle it is to worry about dinner for everyone while up here. Having it brought to us makes such a difference. Allie is still playing, and I feel like I'm missing out. I'm going to cut this journal short. Time spent with Allie is the best time there is.
Have a good evening, Jenny, Andrew, and the drool machine (these darn teeth!!) Allie
Monday, July 19th--Day Two 10:15pm--Not sure how, but I just lost my original post for the second time! What a talent I have. Let's see if I can remember most of what I said so eloquently about ten minutes ago.
Today has been a crazy day. Allie feel asleep last night at 7:30, and except for a bits of screaming, didn't wake up until noon. I was terrified. She started screaming out in pain starting out at 7 this morning. Her eyes would be closed, but she would be screaming. I called Cindy in at 10 and we took her temperature. It was 100.4. We were naturally concerned. I called Andrew, and he was able to make it here before Dr. Goldman entered the room. Dr. Goldman was concerned that her fever could potentially be an infection, so he ordered blood cultures to be run and immediate antibiotics. The philosophy up here is treat first, diagnose later. They don't want to wait until the next day before starting antibiotics for fear that something could be serious and life threatening.
Andrew left at noon, and my mom came in. I don't think I would have made it through my day without her. She kept me company, kept me sane, and loved on Allie. At noon, Allie woke up wanting to play a bit. I laid down on the bed, propped her up where her head and hands were on my stomach, and she played with her favorite blocks (Connor and Cindy--thank you for the giraffe toy with the blocks--she loves them!). She fell asleep on my chest about an hour and a half later and slept until 3. I couldn't move. I even ate my lunch laying like that on the floor. She was sleeping and not screaming, so I wasn't touching her!
Michelle is back as our nurse tonight. So nice to see a friendly and familiar face when you've had a long day. She and Cindy both told me that they do not believe Allie has an infection. They think it is cyclosporine, the anti-rejection medicine, and the steroid. Her blood pressure was also up today, which could be causing her headaches. Goldman ordered her blood pressure medication, and we saw an immediate response. She is just very cranky. However, if you notice when it is, she seems to be at her fussiest when cyclosporine is infusing into her body and at least until an hour after its done. She will be taking this medication for at least six months, so we'll be having lots of fun. And if she didn't have enough to bother her--her drool is at an all time high because she is cutting more teeth! Poor baby! Her cry has gotten so hoarse from all her screaming this morning. Its just the most pathetic and sad thing you've ever heard. What else happened on our floor today? Jordan waited for hours to have a CAT scan. They still don't know what is wrong with him. Amy is at her wits end. Sweet baby Fielden's central line came out (keep in mind that this is attached to his jugular vein!!), and he had to go to OR for surgery. Gave Annie and Jack, his parents, quite a scare. I really like Annie. She is quickly fitting in as part of our "group." The ringleader of the group made his triumphant return tonight--that's right, Sam Eisenberg is back on the floor!!! Yipee! I have missed them so. I heard Sam and Ethan coming out of the elevator, so I walked to greet them. Oh you should have seen them! This description doesn't do the moment justice--There are three shelf bins on rollers in front of the elevators. One of the bins broke, so Dennis is holding a roller. Dana is still in the elevator when it starts to close, so Dennis jumps in it to keep the door open. Sammy freaks out yelling, "Mommy!" at the top of his lungs, consequently blocking Dana from actually getting out of the elevator. Everyone is laughing. Dana said it was like the Griswald's Great Return! Dana, Dennis, and I laughed and hugged. It was so good to see them.
People were in much better spirits tonight. There is something about the Eisenberg clan that brings that out in all of us. No one wanted to stay in their rooms. Sam was out walking around, Allie was playing with my mom (happily, I might add!), and Dana and I were doing what we do best--loitering the halls. We hugged tightly. Sam came over as we were hugging and wrapped his arms around my legs and held on to both of us. It was a moment to cherish. This people up here are my family. I love them all--the parents, the patients, the nurses and doctors. Having Dana here is like having my family complete. She told me right as she was heading to bed that she couldn't make it through this without me. Nor could I, Dana. I feel the same about you! Love you dearly.
All in all, the day went alright. We still don't know if she has an infection, but we pray she doesn't. Her temperature is back below 98 and has been since this afternoon. Her blood pressure, heart rate, and oxygen levels look perfect. She is sleeping peacefully without even putting up a fight to fall asleep. She had some good moments. Andrew took her flying above his head around the room, she smiled at her giraffe friends on Baby Einstein World Animals, and she fell asleep happily. It is so unlike the time she had the infection. That time, we were unable to move her for days. Nothing we did brought a smile. At least today, she did have times where she felt better. As I said, it was periodioc. Off and on fussiness. Not constant. She may just be this way for a while until her body adjusts to the new medication. The thing for us to do is enjoy the good moments while they are happening because you never know when that bad moment will be. Sounds like a good plan for life in general though, doesn't it?
I think I'll end with that tonight. To all my family and friends--thank you. I don't tell you enough, but I really love you. I hope you know that.
Jenny |
||||||||||||||
 |
 |
 |
|||||||||||||
