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Week 17
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
http://www.phoenixfamilies.com/allieshirts.html
Sunday, Aug. 29th--Day Forty-Three
8:15pm--Its quiet here in our room right now. Andrew is at the movie with two of his buddies, mom is out to dinner with a friend, Frances, Jim and Amie are at our house in Allen, leaving just me and Allie here in the hospital. Not that I mind though. I went to this movies this afternoon myself (with my student Kaylie Peska and her wonderful mom Karen). Allie is asleep for now, and I'm shifting through e-mails and the MSN board.
We did end up staying at home last night. I spoke to both mom and Karen again and they both reported that Allie's fever had broke and she was simply looking around, watching Baby Einstein. We decided to remain at home. Guilt kicked in around 11 for me and I just couldn't shake it. Guilt turned to grief as I looked around my house, wishing that my baby was there with me. I cried for Allie and the things I wished for her.
We woke up this morning around 9 (took a tylenol PM--I don't wake earlier than that when I do!) and had breakfast with the family. We arrived at the hospital just in time to visit with Dr. Goldman briefly before he headed home for the day. Her blood test didn't seem accurate this morning. Her white count was the same, but it was showing no blasts today and her hemoglobins (red cells) were considerably lower since yesterday. As much as I would like to believe there are truly no blasts in her blood, I don't. I know she still has cancer in there. Most likely, the technician didn't do a good job or overlooked putting that information in. We will see what tomorrow's results yield.
Wednesday or Thursday of this week should be very telling. The doctors are scheduling a bone marrow biopsy. With the sample they removed, they will be able to do several things--XY chromosome test to see how many donor cells are present in her body, flowcytometry to test the percentage of leukemia in her marrow (more accurate then her daily blood tests), and a test that will tell the percentage of her cells that have the chromosome related to her leukemia.
As for Allie, she is covered in a rash! Her face is beet red, and her back and stomach have turned into one solid rash. She was in a good mood this afternoon--very awake and alert. She talked and babbled most of the afternoon. She likes to "talk" to a ring toy of hers that she shoves into her mouth. She will yell, grunt, and growl while it is in her mouth. Its hilarious to listen to! She even went so far as to smile today!! We have witnesses--she can still smile! Hallelujah! I've missed that smile. She ate a little oatmeal twice and even gummed a bit of a popsicle through mesh feeder.
It was a good, easy, and relaxing day. I'm curious as to what her counts will be tomorrow morning. Oh, she just woke up--didn't you know my silence wouldn't last too long in this room. She's talking to her fist right now, so I best go and play!
I am working on posting a list of links to various projects in Allie's name or fundraisers for the Leukemia and Lyphoma Society. There have been several people who have felt called to use their talents to help raise money and awareness in Allie's name. I am truly honored that those people are doing that for our baby. What true generosity I am witnessing right now. Allie's assistant, aka Nana, is hard at work answering e-mails. What a task she has undertaken! She says that since she can't be with Allie here everyday, this is her contribution. Trust me, these grandmas have made enough contributions to last a lifetime!
Love, Jenny, Andrew, and the talker, Allie Saturday, Aug. 28th--Day Forty-Two
8:45pm--I'm sitting on my couch with my laptop on my desk. Andrew and I are here with Frances, Jim, and Amie, Andrew's sister. Amie came in town today to attend a wedding of her childhood best fried. Its parents weekend at Camp Murphy. Brandy is here eating a pig's ear, happy as can be to be with us. Only problem is that we may or may not stay. Last I heard, Allie was running her night fever. Karen called me, per my request, to tell me what's going on. She really feels its her nightly neupogen fever, fairly common for patients. We are going to call again in a little while to see if she has improved. If so, we will stay here for the night and let her be with her grandma. If not, its back up to Medical City. I hope that we have a chance to be home tonight. More because it means that Allie is comfortable and ok than because we need a night away (which we really do!)
Allie had a really rough night. She had a fever around 10pm of 101.7. We gave her some toradol, and she fell righ tto sleep. The screaming started around 3am. We couldn't figure out what was going on with her. We gave her a bolus of fentanyl and comforted her to get her to back to sleep. That lasted about thirty minutes. What in the world was going on? Turns out that the tubing to her versed, the sedative, had somehow gotten disconnected. She wasn't getting her medicine! We know that it was fine at 10, but we don't know when it went off. For her to be completely off her medication was too drastic of a change for her--extreme withdrawal.
This morning, she seemed to be doing much better. She was awake and loving on her daddy. By the afternoon, her pain was back--neupogen! She vomited when I tried to give her the gleevec, not getting any of it down her throat. I was able to get it down her a few hours later though.
Her white cell count is still only at 300. She started neupogen on Tuesday, but we have not yet seen an increase in her white blood cells. She has a pretty red rash on her belly, palms, feet, and back. Her cheeks are bright red. Her blasts are now at 9%. Dr. Goldman warned us not to worry just yet. Daily CBC's are hand counted, so the difference between 8 and 9% is minor. His concerned is that we don't know for sure what is going on in her bone marrow. The bone marrow is the factory for the cells. Leukemia can be stored in the marrow before it is released into the blood, thus making us unable to detect her percentage of cells in her daily CBCs. Next step is for Allie to have a bone marrow biopsy middle of next week to find out what is going on in her marrow. If she is full of blasts, we will have to reconsider the current treatment. If her marrow looks even stable and not full of blasts, we will continue our current course of treatment with the gleevec. OK, so I have four or five days where I will worry about her results. Nothing surprises me anymore. I wouldn't be at all surprised if she is full of leukemia. Devastated, yes, but not surprised.
Changing Allie's diaper is becoming a harder task. As soon as she hears the zelcro rip off her, she begins to cry. When we lift her to remove the old diaper and put on the new, she screams. It takes a few minutes to relax her afterwards. We all hate to change her diaper. What worries me is what is causing her the discomfort and pain. Is it the neupogen or the leukemia? When she was first diagnosed, she screamed for diaper changes because the leukemia was hurting her so badly. Cell growth can also cause bone pain and body aching.
Please keep your prayers going for Allie. Pray for some relief to her pain, for her white cells to grow (and be healthy, not leukemia cells!), for her fevers not to be an infection, and for her blast percentage to stay down or go lower. My poor baby.
As for Andrew and me, we are just tired. I had a pretty large break down last night. I couldn't contain my crying and tears. Lots of fears. I want to be this child's mommy for many years to come. I don't want to see my child hurt. Though she didn't have a bad day, she didn't have a great one either. All we want for her is many great days to come. I want her to smile again! She's not smiling anymore. I want to see her have a big smile on her face with her mouth wide open and her eyes dancing.
Thank you all for your kind words and thoughts. Jenny, Andrew, and sweet Allie
Friday, Aug. 27th--Day Forty-one
9:00pm--Andrew and I are watching the movie Return to Me with Minnie Driver. She just dropped a letter into the mailbox expressing her gratitude for her heart transplant (if you haven't seen the movie, I didn't just give anything away-watch it, its good). I couldn't help thinking what a great thing it will be to drop a letter in to the family that helped give Allie new life. I think its after a year or two that you are able to contact the family through the agency. How do you express such gratitude and thankfulness?
Its was a good day today. Allie babbled so loudly that the nurses were wondering what she was up to in here! She barely cried at all.
For once, I'm not much in the mood to talk or write. I'm not upset, sad, grumpy, or anything else. I'm simply wanting to spend my Friday night relaxing with my husband. I think I will write more in the morning.
Thanks, Murray family, for the EXCELLENT dinner tonight--I had two helpings of the veggies, and that's not like me. I'm usually more of a two helpings on the dessert kind of girl.
Have a good night, Jenny, Andrew, and talking baby Allie Thursday, Aug. 26th--Day Forty!?! Seriously? My goodness
8:45pm--We are now forty days post transplant. Forty days since I watched the blood go through the tube and enter my baby's body. We have almost been here for a solid four months, with only a five day stint at home. I don't remember much about life outside of this place anymore.
Dr. Goldman and I were talking about the redness on her palms and the bottoms of her feet. Her back is bright red and covered in a rash. That indicates to me that there is some GVHD (Graft vs. host disease) going on. Dr. Goldman feels confident that we still have G, aka donor cells. I doubt that we will do an XY test any time soon to see the percentage of donor cells and Allie cells, but lets just hope that the donor is fighting in her body to take hold.
Allie had a much better day! For the past several hours, she has been awake and talking to everything and everyone in the room. She took a three and a half hour nap this afternoon while I relaxed and watched 50 First Dates. She is now sitting with my mom, holding a rattle and making raspberries at it. I love her raspberries. I wish you could hear her as she does them. Comes with a loud "Aaahh, bbbzzzz!" In order to help her achiness, Goldman and I came to the consensus to give her toradol, IV pain medicine, two hours prior to her neupogen. From what I saw today, we made the right choice. Our only other option would have been to take her off the neupogen, thus risking the white cells from being able to grow.
What a pleasure our daughter is. She has won over the hearts of many. There are several nurses here that visit Allie every time they work, even if Allie isn't their patient. Many nurses call her "my baby" when they talk about her. She is the floor's baby. Dr. Goldman cuddled up with her in his lap today while we talked. As he was trying to listen to her lungs, she was trying to rip the stethoscope out of his ears. I think he lingered a little longer just because she was being so good with him. The respiratory therapists that come every four hours giggle at her because she holds their hands or reaches for their equipment every time they work on her. Patients that are able to leave their rooms to walk look through our window to catch a glimpse of our chubby little girl.
I don't know how much I've mentioned specifically my husband in my last few posts. Andrew went back to work on Wednesday of this week. When we got the bad news of only 7% donor cells, Andrew moved in here with me and Allie. He has been living on the couch. Having my whole family together has made the stress of what's been going on a little easier to handle. Andrew is my rock. Everyone thinks I am so strong because it is my words they are reading. I wouldn't be so strong if it wasn't for that man. His strength pulls me up when I get down. I love you, Andrew, and I will love you forever. I always want you to know that.
Thank you to all the people who have responded to our plea for meals. We appreciate those meals more than you may know. The nurses say they have eaten very well in the past few months. I like when we are able to share with them. Its the least we can do for them. Every day, they give their 110% to helping my child. They have never given up on Allie. Feeding them seems like such a trite way to say thank you, but it does make me happy to know I am able to do something for them. Wish I could do more.
Thank you, 12th South Nurses, I dedicate this post to you. Andrew and I can't thank you all enough for what you do for Allie. Thank you for the love you give our daughter and the dedication you have for your job.
--Jenny, Andrew, and our buzzing baby Allie
Wednesday, Aug. 25th--Day Thirty-Nine
9:00pm--What a day. Neupogen makes Allie feel terrible. It can give a patient flu-like symptoms--body ache, fever, chills, diarrhea, etc. Allie ran a fever all day; she cried and slept. Her body aches. She arches her back in pain. Several times today, she has required extra pain medication. She screams when touched. Once you get in a comfortable position with her, you aren't moving for a long while. I sat in the rocking chair with her for three solid hours this morning unable to move. If I even shifted positions, she cried. She didn't want anyone else but me this afternoon. We napped together on the bed, holding hands. I let go of my hand on accident and she about lost it. She looks swollen and uncomfortable Poor thing.
Allie's blasts are now at 6%. We continue to go in the right direction! Her white cells are also still coming down. Today, they are 200. A normal amount is between 4,000 and 11,000. The goal of the neupogen is to help her donor cells grow more cells. We don't want it to affect the blasts, or leukemia cells. The concern is that if her whites continue on this trend, she won't have anymore left. That would wipe out her donor cells from the cord blood transplant too. If those all die, they won't be able to come back. Her last round of chemo was so powerful that it killed off her ability to produce whites on her own (hence the need for the tranpslant). So, the prayer is that she can start making some white cells. She can't have GVHD fight the leukemia without the main ingredient--the G. That's the graft, aka the donor. No VHD without it! The lympocytes, a part of the cell, in the graft recognize themselves to be in something foreign and attack. They are hopefully working with the gleevec to fight off the leukemia.
A short Q & A from the last few days....
Has Allie's Angels become a national team for Light the Night? Amazingly enough, yes. If you register for a walk in your area for Light the Night, you will most likely find an Allie's Angels team. The Plano team is called 12 South Angels (be sure to register--we have 96 participants registered, but we want more--if you are in our area, please join us), but it too is linked to Allie's Angels national team. At the end of the year, we will be able to find out a grand total of how much money is raised. I want to hear that our team raise more than most corporate teams! Wouldn't that be the greatest? To prove that we as a community of people are stronger than a company is raising awareness and spreading our love for a child? Would definitely make a statement.
How long will Allie be on the gleevec? Gleevec is different than chemotherapy. It is much less toxic. She can potentially take this everyday for several YEARS. Once her body adjusts to the medicine, she should be able to sustain normal counts on her own. She may require transfusions of platelets a little longer, but that should be it.
Will Allie be considered to be in remission if she gets less than 5% blasts again? I mentioned this last night, but she can't be considered to be in remission unless she has less than 5% AND a normal white cell count. So, no, she won't be in a state of remission this week, even if they are less.
How long do the doctors project you will be in the hospital? At this time, that cannot be determined. We could be here for weeks or many months. Allie may see her first birthday here. We don't know. We just hope that she is still with us on her first birthday, no matter where she is.
OK, if I think of more, I'll write more later. I know its a lot to understand. I am learning as I go, so my explanations may not always be the best. You are welcome to ask a question if you are confused. However, please watch the nature of your comments and/or questions. If you are trying to understand her current treatment or the nature of what is going on, that is one thing. We have had a few things that I have felt have crossed the line. I won't go into to detail, but I will say to be careful how you word things. We need to stay positive. We ask you to keep anything remotely negative in your own head. Thank you.
We had a wonderful meal brought to us tonight. I knew that Lori and Leah Watkins were on the list for dinner tonight. Leah is a former student that I was very close to during her two years with me and have remained in close contact. My mom came in to tell they had arrived, and I immediately jumped up to go greet them (anything to get out of the room!!). The waiting room was empty. I looked around and found no one. I checked the family room only to find the best sight--a real table, including a table cloth, napkins, REAL PLATES!!, a bottle of wine, and a French meal perfect for me! What a treat! We wouldn't allow them to leave without joining us for the meal. We had two hours of great food and conversation. My mom joined us long enough for the meal since Allie was sleeping (thank you to ever invented a baby monitor!), but went back in to be with the baby afterwards. Having that meal was a special treat for me. I think the moment I won't forget from tonight is when we were sitting down. "I'll sit down next to Jenny," Leah says. Excuse me? Did you just call me JENNY? "I know, sorry, Madame, it felt wrong to me too!"
Leah is from my group of students that I was very close to. There were 92 of them that went through 7th and 8th grade with me, spread over three classes. All three classes were great, but she was in my BEST class I've ever taught--4th period 8th grade from that year. Not always the best students on the academic scale, though I had several bright students, but the most enthusiastic group of kids. I didn't have one behavior problem in that class. Every class, I always started off with "Bonjour tout le monde." Now, most class periods grudgingly respond with "Bonjour, Madame," under their breath. Not this class. They would darn near shout it! They were in the middle of my day, always making me happy. Can't believe that group started the tenth grade this year. How the time flies--yikes!
Allie is awake again for only the second stretch of the day. She is irritable and running another fever of 100.9. I just hope the whites start climbing soon. The sooner they do, the sooner we can take her off the neupogen.
Thanks to all who have signed the guestbook in the past few days. When I started to feel a little down today, I went and read your comments. Helped me get through the day without getting upset and cry.
Have a good night, Jenny, Andrew, and our irritable baby girl, Allie
Tuesday, Aug. 24th--Day Thirty-Eight
8:00pm--This should be week 17, but I don't know how to create a new page. Andrew is playing softball tonight, so I'll try to get him to do it later today or tomorrow.
Today has been a fairly uneventful day for us. Allie has been perfect. Not much crying at all. Her white cells are down again to 300, and her blasts are now at 8%. Dr. Goldman is concerned about the number of white cells she has. She is very neutropenic and vulnerable to infections.
Normal white cell counts should be between 4,000 and
11,000. Remission is less than 5%; however, that is once the body is at
a normal white cell level. This means, that if her blasts go less than
5% this week or next, she isn't technically in remission. If her white
cells come up and they are all good and healthy, and she still has less
than 5%, THEN she is in remission.
Monday, Aug. 23rd--Day Thirty-Seven
8:35pm--We're starting our day the same way it ended--with a temperature. We woke up this morning to her temp being 102.7. The normal drill went into effect--blood drawn for cultures, doctor called, antibiotics ordered, toradol given. Hopefully, nothing will grow in her cultures. We don't want her to have an infection.
So, we thought this set the tone for the rest of the day. Anne walks in with Allie's daily counts. Ready? Yesterday, her whites were 400, next to nothing, and her blasts were 24%. OK--today's whites were 400. Her blasts were....
TEN PERCENT!!!!!!!!!
We asked Weinthal if he attributed it to gleevec or GVHD, and he answered, "yes." In other words, it could be both. But, to quote Dr. Goldman this afternoon, "Who cares?" Something is working and that's all that matters.
Allie had a pretty good day. Once the toradol kicked in, she felt alright, alright enough to go on the floor to play on the mat! Last Tuesday, I didn't know if I would ever see my little girl do this again. I didn't know when she would be awake again. No, Allie has not won the war against leukemia yet. She is not even close, but she is giving leukemia a run for its money. She is proving that she is as tough as her leukemia cells. Let's just pray that she is tougher!
She is now starting to spike a fever again. Its currently at 100.6, but it is climbing.
Prayers for these next few days (I don't remember giving specific prayer requests lately): pray for Fieldon's results from his XY test tomorrow. We want him to have girl blood! (he had a cord blood transplant from a female donor born one month before Fieldon). Pray for Allie's fever to go down and that it is not any type of infection. An infection right now is very serious and extremely dangerous. Pray for Sammy. Dana told me today that he has a rash that looks like GVHD. He comes in tomorrow to the clinic for a six hour infusion of IVIG. Please pray that is the only amount of time he spends in the hospital. We don't want him to have to return to the 12th floor.
Thank you for your prayers and kind words. Andrew got a temporary guestbook up and running. We love to hear from people from all over. However, we especially love to hear from people that we know. If you know us personally, please please take the time to write us a quick note. I don't care if its just, "We're thinking of you." To see a name that we recognize means a lot (not saying that those stranger comments aren't welcome because they are).
Thanks, Jenny, Andrew, and Allie with 10% blasts but 110% spirit
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