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Week 18
MEAL DELIVERY--- If you are interested in bringing a meal for the Scott Family either for lunch or dinner, please e-mail Frances at NanaFrances1@yahoo.com. We thank every person who has brought us a meal thus far.
***UPDATED INFORMATION FOR DONATIONS*** Light the Night National Team Coordinator--Lois Whittaker Contact Lois if you have any questions lbish2@hotmail.com
Fundraisers for Allie--
http://www.browgriffiths.com/Allies_Magnets.html
Sunday, Sept. 5th--Day Fifty
4:00pm--I realize that reading day fifty doesn't seem too bad. Keep in mind, that isn't fifty days since we started this; its fifty days since July 17th, transplant day. We have been here over 4 months now. I don't remember things like grocery shopping, getting gas, or driving to work. I can't tell you the last time I went to church or took the dog for a long walk. Normal things like that seem so foreign to me now.
It was another hard night. My back is hurting, so it is difficult to stay in that position on the bed with her for long. Andrew and I switched places every two hours through the night. Poor baby. Not only was she unable, she was refusing the pacifier. We are so used to that being such a comfort for her. She wailed every time it came near her mouth. Her mouth is so dry. The only way she will allow the paci to come near her even for a second is if it has been dipped in water. We increased her fentanyl again tonight, finally allowing her to sleep.
I woke up this morning and went out to the nurses station. The first thing I asked to see was a printout of her lab sheet. Disappointed doesn't describe how I felt when I looked. White cells--300, back down. Red cells-9, dropping but not in need of a transfusion. Platelets--9,000, no surprise, she'll be getting a transfusion later today. Blasts--31%, more than doubled since yesterday.
Not good. Leukemia is on the rise again. I sat on the couch in the dark this morning while my two loves slept in the bed together. Andrew looked up at me to say good morning. I handed him the printout. His immediate response was, "Its not working." Doesn't look that way to me. Doesn't mean we are going to stop though. We are continuing with the gleevec. It did do something a few weeks ago. Looking for that miracle...anyone have it in their pockets? While you're at it, check for the cure for leukemia!
I hate this disease. It will more than likely kill my baby. I'm a ball of emotions. I alternate between wanting to beg her not to leave us, and wanting to let her know its ok to go if she is ready. Andrew reminded me, through our tears, that it isn't our choice. It isn't even Allie's choice. This leukemia is more powerful than anything else in her body. I don't want her to suffer. I don't want her to live a life that is filled with pain and discomfort. That isn't a life.
I'm not giving up. I will hope for my daughter until the last breath, mine that is. Pessimism is getting the better of me though. I really need a good night's sleep. My mom has graciously offered to give us a night away. A big bed and a tylenol PM is needed. Much as I don't want to be away from Allie, I know that I need to be. I want be any good to her if I can't function. The general comment to me today, "oh, you look tired." Of course, that's polite for "you look like crap!"
Allie has been wonderful today. She was awake from 10:30-3. She raspberried us, watched Baby Einstein (World Animals, of course), and stroked my face. Both grandmas are here playing Scrabble together while Allie is napping. The stoned look is back, but it keeps the screaming at bay. The skin on her back is starting to be normal again. Her legs and feet are beginning to peel as well. We've had so much bad news this week that I forgot to mention something good--Allie's eyebrows and eyelashes are growing! She lost her eyelashes in a matter of days in early July. I was so sad as it was one of my favorite features. Though they aren't long yet, they are coming in thick and dark. She is still teething, but none of the five teeth have pushed through yet.
An update on Sammy--he is here in the hospital on 6D. I called Dana's cell as soon as I finished my post last night. She told me they were on 6 and she would call me back. She knew exactly what would happen when she hung up the phone. I marched myself over to building D to go and see them get settled. Poor Sam was laying on the bed. I went to him and caressed his head. He looked at me and said, "I feel BAAAD." It breaks your heart to see a child hurt. Please check out Dana's post to get all the details on Sam. We just want a room to open up here so that we can get him up here with us. We need to be here together supporting each other.
There is so much love present in this room. I don't know what tomorrow will bring, but I know it will be filled with love. I just realized its Labor Day weekend. Spend your holiday weekend with those you love and give them extra attention. Even if it means you have to let the grass get a little longer before you cut it or let the dishes sit a bit longer. Trust me, every minute counts. Make it a weekend filled with love, just as we intend to do here.
All our love, Jenny, Andrew, and Allie
Saturday, Sept. 4th--Day Forty-Nine
10:15pm--Exhaustion has set it. We had a horrible night's sleep last night. Can I even call it sleep? No, it wasn't that until about 6am. I knew we were going to have trouble even before we tried. She was fussing unless she was asleep on me. I tried about 10:45 to put her down only to pick her back up at 11:15 to sit with me at the computer. She woke up, or didn't sleep at all, every hour. Andrew and I kept switching spots all through the night in an attempt to let the other parent get some sleep.
Today, no nap for me. I tried, but with the beeping, the baby's restlessness, and people coming in and out, I wasn't able to sleep. Allie had a hard day, but not quite as bad as the night. With toradol, she was able to calm down and play with her toys a little. She ran a temperature this morning for the first time in three days. In general, she's just miserable. We upped her fentanyl again this afternoon, and Marsha is upping it again right now. Andrew and I are afraid of increasing her versed too much because it just leaves her heavily sedated. The scare for us is how she got so junky with her lungs the last time. We are afraid that will be too much on her. Seriously, how much can one little body endure?
Tonight, Andrew and I had a wonderful meal with Dana, Dennis (Sam's parents), Annie and Jack (Fieldon's parents) at a little Italian restaurant on Forrest Lane. Allie stayed here with her grandmas. They took care of her and played Scrabble. We had hoped to possibly go home tonight, but we don't feel comfortable. We don't want to leave her. As we were walking in tonight, we joked that if the grandmas said she had a great time without any problems, we were just going to turn around and say, "See ya!" Well, she had a pretty major meltdown. We just don't feel ok with leaving her, though we know she would be well taken care of. I wouldn't be able to relax at home if we went because I would be worrying about Allie too much.
Sam is probably on his way up to the hospital as we speak. All through dinner, Dana's brother Alex called, per Dana's request, every thirty minutes to give report on Sam. He wasn't feeling well, but was simply running a temperature of 99. 101.5 is the magic number that gives you an admittance ticket to the hospital. After coming back tonight, I called Dana to check on him. She had just finished packing a bag. While we were talking, she decided to check one his temp one more time--101.6. We hung up for her to call Dr. Lenarsky. I don't know whether or not he will be coming, but I think it is the most likely scenario.
I'm scared for Sam. First thought is always leukemia, but I feel in my gut that it isn't that. Though we don't want him to have an infection, it is much more treatable. 12th South is packed, no room open for little Sammy. He will go to 6D instead. Not where they want to go. 6D is capable and competent, but it isn't "home." Please say an extra prayer for Sammy, Dana, Dennis, and Ethan. We don't want him up here for long. Please pray it is not leukemia causing him problems, that nothing will grow in his blood cultures, and that he is able to return quickly to his home and his family.
I'm closing now to go and call Dana again. Thank you for your comments and continued support. As I've said before, I miss contact with the outside world. I'm such a "social butterfly." Being in here for months is taking its toll on me. Please, if you are someone that knows our family personally, PLEASE send me a quick note. Even if you have signed this guestbook several times before. Just seeing familiar friendly names makes me feel as if I haven't lost touch with the outside world completely. Even if you just tell us a quick hello and update on how things are going.
Love, Jenny, Andrew, and fussy Allie
Friday, Sept. 3rd--Day Forty-Eight
10:00pm--Like a lizard, Allie is shedding her skin. Everything from the thigh up is peeling. This is a result of the GVHD rash. We try to keep her pretty lathered with protopic, a special cream for GVHD, but it doesn't seem to help that much. Dead skin is on everything--the pillows, our shirts, her dress, the sheets, everything! And we aren't making the situation better given that we are picking at her skin like a bunch of gorillas!!
For the first time since starting neupogen, her white cell count has increased. It went from 300 yesterday to 700 today. When asked if this was a good thing, Dr. Lenarsky replied, "its not insignificant." In others words, yes, its good. We want it to go up further, but we want it to be healthy cells, not leukemia! Luckily, her blast count is the same, holding at 13%, same as yesterday (keep in mind that there is more leukemia in her bone marrow then there is in her bloodstream). I worry every day what the next day's counts will show with regards to the number of blasts in her body. There were no medicine adjustments or additions today. As Lenarsky emphasizes often to us, Allie still has some good things going for her--her heart, liver, lungs, kidneys, and spleen are all functioning considerably well given what her body as gone through. No problems as of yet.
Allie's mood was overall not happy today. Her morning wasn't so bad. She and I rocked and watched Dawson's Creek on TBS (pathetic I know, but I won't sellout my husband and say what show he was watching--just mention that it involves Mr. T!). She stared at Dr. Lenarsky allowed him to hold her. It was so adorable--he held out his arms to her, and without a thought, she held out her arms to him. It was a sweet moment. After about noon, things went downhill. This correlates to the time her neupogen started. She cried and arched her back all through the afternoon. She could not settle and calm down. Toradol, the magic pain reliever, helped her take the edge off. She still isn't happy, but she isn't screaming, so we're happier. These walls close in on you quickly when you've spent your day with a screaming infant. Thank goodness for the fact that she is calmly sleeping on my chest as I'm writing now. Screaming wears you down!
Last night, Dana wrote a beautiful post last night describing a conversation we had yesterday. I was in a bad spot then, and she helped me. Our closeness allows us to say things to each other that I may not say to someone else. It lets her ask the tough questions without me getting offended or upset. I know that she has asked herself those very same questions. I've reread her post several times today. I had wanted to write about it, but couldn't find the words. Thank you, Dana, for finding the words for me. That is not a conversation I want to forget. It was hard and emotional, but cleansing at the same time. Now, for something weird--here's how in touch with each other we are--Dana just called me to ask how I felt about her posting last night, and I just wrote this paragraph. What I love about our friendship is how pure and honest it is. I would tell her anything and we keep nothing secret, not even in our journals. And I don't mind that.
I just hung up with Sam. I swear, he's three in a thirty-five yr old's body! The first thing he said to me was, "oh, Jenny, poor Allie, she is really sick, huh?" I was nothing but honest with him when I confirmed that yes, she was very sick, and her cancer came back. "Oh," he said. He too had a rough day today. As Dana describes, he just feels puny. His belly and legs hurt. Parents of children with leukemia immediately jump to the relapse scenario when hearing about leg pain, or fevers. Allie's legs hurt right now so bad that she won't put any pressure on them. Most likely, Sam is fine, but the fear is there, and it is real. That fear will follow all of us through the rest of our lives. Sam will be fifteen and complain that his leg hurts or run a fever and they will allow their minds to go there. I think we will always be on our guard with Allie and our future children. Please say a quick prayer for Sammy. I love this child so much and don't want to see him return to the 12 floor for any reason besides a social visit.
Our fundraising efforts for Light the Night in Plano continue to climb. We are now at $19,000!!! When Dana first mentioned the goal of $25,000, I thought, "no way." Surely we couldn't raise that much money. Now, the reality is that YES WE CAN!! And we can probably do even more! For those people walking with us, please start your fundraising. As I said before, set yourself a personal goal and see if you can beat it. When I walked with LTN a few years ago, I set my goal for only $100. I was surprised that my e-mail asking for contributions helped me raise over $300. Its always worth asking. What a good cause.
That's it for tonight. Go and hug your loved ones tight! --Jenny, Andrew, and our lizardgirl Allie
These pictures just don't do her justice.
Thursday, Sept. 2nd--Day Forty-Seven
8:45pm--On top of everything else Allie is going through, we discovered tonight that she is cutting not one, but FIVE teeth! Good thing for fentanyl. More than likely, she doesn't feel it one bit. Last night, we increased the dose of her continuous fentnayl drip. Seemed to make a difference. We had a much better night, and an even better day. She's totally wasted, but it helps her feel a little better. She may be the youngest person to check in to the Betty Ford clinic if she survives this, but I don't mind. Is there a Bitty Betty anywhere?
For the first time in a long time, we woke up to her talking, not screaming. It amazes me that she continues to do new things. Her newest things involve human contact. She craves it. At night, she holds us, our faces or our hands (I say our because Andrew and I alternate sleeping with her or on the couch all throughout the night). Andrew had the morning shift. He said he woke up to her stroking his face and talking to him. When you go to hold her, she raises her arms in response. Her raspberrying is at an all time high. Yesterday, Dr. Lenarsky looked at her and said hello. She responded by looking right at him, sticking out her tongue, and making a huge raspberry. What a character she is.
There is so much spirit in my daughter. Knowing that, it makes it that much harder for me to think about the possibility of letting go. And yes, that is a big possibility. We understand there is little chance for her. Not that I don't hope, but I understand her odds. Still, if you look at her, you see that she is still here and wanting to be.
Dr. Lenarsky called us this afternoon with results from the XY test. He told me that it is interesting news, but nothing to get my hopes up on. As he puts it, "Its is what it is." The main problem with the test is that there wasn't enough cells to get an accurate assessment. They could only count 11 cells from the bone marrow biopsy with which to use for the test. With that, four of the cells were XX (female--Allie cells), 7 were XY (male donor cells). From the Trisome (sp?) chromosome test, 9 cells were normal without the chromosome and 2 had the chromosome (Allie's leukemia chromosome). From Lenarsky's explanation, this information simply quantifies the bone marrow biopsy. That is roughly 20% leukemia according to this test. It was 25% from the flow, more accurate. So, basically, the test isn't going to make a difference in how we proceed, it is simply "interesting."
Her blood today showed 300 white blood cells, with now 13% blasts in the blood. Her bone marrow is beginning to release the blasts back into her blood. I don't know what this means. Is the leukemia going to take over her body again? I don't know. Her rash, the GVHD sunburn, is now peeling all over. We had to change sheets twice because she had dead skin everywhere. Her face, ears, head, neck, back, and belly are all peeling like crazy. And everyone is picking on her! Its driving us all nuts. We have some topical cream that we use, but it only seems to last an hour or so.
She needed a platelet transfusion again today. I just asked Karen to total up her transfusions thus far. 62. 19 red cell transfusions and 43 platelets. Sixty-two people have helped save my daughter's life. She can't live without blood transfusions.
I don't know why my baby is sick. I don't know why you are reading about her. I don't know why we don't know about all the other children that are sick and why they aren't getting the same attention. I do know that Allie is teaching us. I hope you have learned a few things from our daughter. The things I have learned include:
*Love is stronger than any cancer. The love we feel for each other means more than any blood count or percentage of leukemia. Nothing will separate our hearts. No matter how long we will have this baby in our arms, we will always have her in our hearts. This will NOT break Andrew and me. We will be husband and wife and our love will continue.
*There is still goodness in people. We live in a world that is dangerous, unpredictable, and often full of sadness. But there are still people out there who care about others without worrying about what's in it for them.
*Doing things, even little things like sending a note, making a meal, donating blood, or starting a website make a difference.
*A human's spirit is often stronger than one's body. This child has more spirit than any of the rest of us.
*It is still possible to celebrate someone else's good fortune even when your own isn't going as well. Even though Allie isn't doing well, I am so happy to hear how well Jordan, Sammy, and Fieldon are doing. A little girl, Teresa, had her transplant this week from her older sister. So far so good. Fieldon's precautions were lifted and he got to play with his 2 yr old sister. Now, how can I be upset about those successes? Sure, I want those successes for Allie, but I will not place a shadow over their happiness. I will celebrate with them and continue to hope for those good things for Allie.
Not to mention the countless amount of facts about blood, medicine, and cancer that I've learned.
I'm ending tonight with lyrics to a song. Natalie Merchant, former lead singer of 10,000 Maniacs, sang the song, "Wonder." Find it, listen to it. It's my daughter. She's our wonder.
Night, Jenny, Andrew, and wondrous Allie
"Wonder"
Wednesday, Sept 1st--Day Forty-Six
9:15pm--"God doesn't give you more than you can handle." I don't know about that anymore. I'm having trouble handling this right now. I'm watching my baby deteriorate before my eyes. Its excruciating. I don't want to hear people tell me about God's will right now or how much he is giving us to handle. Those comments will only make me resent and hate God. I don't want to believe that God made my baby sick, and I don't. I don't want to believe that he isn't healing her because it isn't part of his plan for her life. I have never had a resentful or hateful heart, and I don't want to start now. Hating God doesn't help. I question God right now. I don't understand what is happening, but I don't want to hate Him. Dr. Lenarsky said that if God does have a plan, "He's got some 'splaining to do!" I agree.
Allie had a hard night. She tossed and turned and ran a fever. Andrew and I took turns every two hours or so with her. It gets uncomfortable after a while because you can't roll over and really adjust your position. Around 5am, she decided it was playtime. We did a shift change at 5:45 or so and she played with me until 7. Then she woke up screaming at 8. And that was our day. She would scream and cry, sleep, then play a little. I took a little nap with her. I just don't like to leave her side much. Its as if I'm memorizing her features.
Not much news in the way of medical stuff. We still haven't heard any results from the XY test, though Dr. Lenarsky told us its not a test that he is hanging on. It will be "interesting" news, but it wouldn't change anything. He offered to have her neupogen administer over a longer period of time, instead of the large quick dose she was getting. He ordered her to have toradol whenever she needs it, and ordered a red cell transfusion.
I'm tired and not in the mood to type. I'll end for now.
Tuesday, Aug. 31st--Day Forty-Five
9:45pm--Well, the roller coaster is on the move again. Yesterday, we got good news from Dr. Goldman. He was looking at a smear of her bone marrow under the microscope. Today, he got a chance to look at the biopsy piece and talk to UT Southwestern. Not good news. Allie's biopsy did show cells. 25% of those cells have leukemia. One out of every four cells have cancer. Damn this disease. Damn what it is doing to my daughter.
I'm trying to find the words to explain what's happening. Truth is, I don't know. There is still no leukemia detected in her peripheal blood, but her marrow is producing leukemia. We don't know how much the gleevec is working. Two weeks ago, she had 67% leukemia in her blood. I can only imagine that there was more than that in her bone marrow. Does this mean the gleevec is working? Andrew and I do think that without the gleevec and the GVHD, she most likely would not be sitting in this room right now playing peek-a-boo with her daddy.
Andrew told me tonight that it is imperative that we don't fall apart. I'm falling. I've barely spoken to anyone today. I only respond to questions with half answers and head nods. In my head, I'm screaming, but I can't get the words out.
Allie's other issue is that her white cells still are at a standstill. There is a possibility that they have no chance for recovery, thus giving her something called aplastic anemia. This means a body is dependent on blood transfusions to survive, and normally require a transplant. Well, now there's a dilemma. This morning when we were under the impression that she didn't have anymore cancer, this was a more likely possibility. Dr. Goldman even discussed with us the option of doing a half match transplant from either Andrew or me by getting rid of her T-cells (through an immuno-suppressant called ATG) and then give her the stem cells. No chemotherapy needed. Right now, her body is too weak for chemotherapy. That is no longer an option with her still having cancer.
I don't know what will happen next. We have increased her dosage of gleevec and neupogen in hopes to continue with progress.
Andrew and I walked across the street to have a quick dinner at Black-Eyed Pea. Poor waiter didn't know what was coming when he asked, "Are you alright, ma'am?" Poor guy. I burst into tears. Will I ever be alright? I've been at this place before. She gets crushing news and looks horrible. Then, miraculously, she improves. Only to get more crushing news! I keep waiting for our miracle to happen, but maybe it won't. Maybe, she IS my miracle. Just her being with us right now is the miracle. She is the greatest thing that has ever happened in our life. Andrew said to me tonight, "You know, we are really blessed." Thank you, honey, for reminding me of that.
Allie is awake and playing with her toys on the bed. Andrew is playing with her, and I'm missing out. I need to join them.
--Jenny, Andrew, and our miracle Allie
Monday, Aug. 30th--Day Forty-Four
5:45pm--Allie had a bone marrow biopsy TODAY!!!!! Again, her CBC results came back showing no blasts (leukemia cells). Wondering what was going on in her body, Dr. Goldman made the executive decision to call and see if we could schedule the anethesiologist Dr. Davis for this afternoon. Why wait until Wed. or Thurs. when we could get it done today, right? That was our thinking.
So, this morning was slow and fussy. Allie was running a low grade fever and very irritated by her rash. I had to give her a bolus of fentanyl twice to keep her comfortable and let her sleep.
OK, are you just dying to hear some news about the biopsy? I guess I should throw you a little bone here.....
Dr. Goldman said it was difficult to get much liquid out, almost as if her marrow is dried up (not exactly a good thing because it means it isn't producing good cells). He was able to get a pretty decent chunk for the biopsy though. Those will be sent to UT Southwestern for a battery of tests, and we should hear some of those results by late tomorrow afternoon or Wed. morning. After leaving us, Goldman took her smear and looked at it under the microscope. We got a call about thirty minutes later.
He can't see any blasts at all in her smear! This is awesome news! Only problem is that he also can't see any good cells either. We are still wanting to see what the tests results are. For now, we'll take this good news. Music to my ears.
We aren't out of the woods yet. We aren't even close. Right now, here are the things that we are battling:
*Keeping those blasts out of her body!!! NO MORE LEUKEMIA! *Getting her to have good cell growth to avoid further complications *Relief from her swelling and GVHD without losing the graft *Blood pressure being too high *Bone pain and discomfort from neupogen *Getting her body to produce urine without the need of lasix *Eating and not needing TPN (Total Parenteral Nutrition) or lipids
We are now coming up on the four month mark of our leukemia battle. Its seems like so much longer than that.
Thank you all for your love and support. Your words mean so much to us. The fact that you care for our child and you take time out of your day to check on our baby means a lot to us.
OK, now for some pictures.....
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