Thursday

Anna's still on low-fat diet. We are having some issues with her bowel and getting things straightened out. Some doctors think we should change meds, some think we should leave them the same, some think we should decrease them...All a guessing game.

The last two days have been very busy at the hospital with everything going on - I've spent the night at home, but feel as if I am playing catch-up all day.

What we know:

1. The PEG-Asp is giving Anna the pancreatitis - chemically induced. Still not sure how to treat this - did I already write about this? I'm thinking I did, oh well, I'm repeating myself a lot lately. Anyway, we can either let the pancreatitis continue and try to treat it upfront or we can change the chemo - neither are great options.

2. Anna's hair is rapidly falling out. Extremely rapidly. As in, she scratches her head and hair is entwined in her fingers. She rolls over and hair is on the pillow. We touch her hair to wash it and come up with multiple long strands. Brushing her hair is the worst, literally clumps of hair come out in the brush. On Wednesday we told Anna what was going to happen as it was becoming apparent that she was eating hair with every bite and it was falling off all around her. She started crying and hid under her blanket. We had a little cry with her but tried to be positive. It was utterly, undeniably, heartbreaking. This poor little sassy princess of her a girl, broken down in heartrending sobs, "I don't want my hair to fall out. I don't want to lose my hair." She looked at us and I will never ever forever forget, with the saddest look on her face, utterly dejected for the first time since we've begun this journey. This precious little girl that will sit for an hour to get her hair done in braids and pigtails and bows and ribbons and flowers and whatever she can dream up, fireworks in her hair :) and said, "I don't want to lose my hair. My hair won't be beautiful anymore."

I know it is just hair and it will grow back, but to her, it is such an important part of her daily routine and she plans hairstyles the night before so we can do them in the morning - I honestly think, a teeny tiny part of her spirit was crushed by this. She cried. For a long time and she hid under her blanket and refused to speak with us. She knows it will grow back and I know she has such an amazing spirit and brightness to her that she will be happy - but that teeny tiny piece, I don't think we can ever replace that. I don't think I've ever seen her cry that much for really anything, even being injured - even having cancer, even her sister telling her that she doesn't look cute - nothing quite this devastating to her person. A deep-down all the way inside nothing can touch sadness.

3. We have, irrefuteable, genetic proof, that, as Sam's Grandma Mary always said, his Mom's side of the family has 'good blood'. Truly, Sam and I had a good laugh about this. When we signed up for the clinical trial there was one small thing that could get us kicked out of the trial. There is a certain gene pattern that automatically makes you ultra high risk and even with ALL you are bumped to a different protocol and have different chemo, plan for marrow transplants - not a good scenario, however, this is pretty statistically insignificant. It warrants a mention in the trial literature but Cori told us that we don't really even discuss it because it never happens. There is also the opposite end of the spectrum, also statistically insignificant. The other pattern means you have better than normal odds to beat this leukemia. Guess which one Anna has - yep. The good one. So, because she presented as High Risk when she first arrived they can't downgrade her, but this does make her treatment, hopefully, a little better in the long term. How crazy lucky is that?!?!?

4. More on the clinical trial: When Sam and I signed Anna up for the trial we knew there could be some unknowns, some possible risks - but nothing we felt would be too great of a risk to Anna. There are four arms to the study and Sam and I discussed and discussed to sign her up or to not sign her up. The night we signed the paperwork Sam told me, "We are going to sign her up and all of this will be for nothing. She's going to get the traditional protocol." He was totally right. The trial has been running since 2000(?) 2004(?) Long enough that we felt comfortable with Anna in it and that nothing bad was going to happen to her. They had made two major changes during the study because the results were not good. Two groups of kids were removed - not that it really matters for us, but kids over the age of 10 and kids with Down Syndrome. *evidently, kids with Down Syndrome have higher incidences of leukemia* Neither of which applies to our daughter.

So...on Wednesday afternoon Cori came in to give us the results of the genetics testing and also to speak with us about the trial. We had signed the paperwork at night and she said literally the next morning an email came into her inbox. The protocol was changing and she wasn't to sign up any more participants until they had re-written everything. Well, evidently, they found out that one version of giving methotrexate is MUCH BETTER for leukemia results than another version. It is harder on the kids in the short term but with statistically significant better long-term results. This time, they changed the study for a good reason! It does mean that we will spend at least one extra week in the hospital in Feb. or March to give the dosage she needs, but it has better overall outcomes. If we weren't in the study, Anna would miss the window to get the new protocol before it is re-written.

5. Ella is so sad for her sister, sad for herself, but I think more sad for Anna. She told me tonight, she never feels mad that Anna has cancer, just sad. Today she finally met the Child Life Specialist, I had her paged to meet and speak to Ella. I told Julie that Ella is feeling a bit jealous about Anna having presents and cards and balloons. Ella piped up and said, "Not anymore. I don't feel jealous anymore Mom." Julie and I both reassured her that it was fine for her to feel jealous and that a lot of kids do when their brother or sister is sick. "No, I don't feel jealous, I am doing too many fun things to feel jealous." So - thank you, AGAIN! to all of our amazing family and friends for the care and keeping of Ella - we honestly could not do this without all of the help and support we have been receiving.

6. Today Ella and I bought Anna an adorable little hat, they just happened to be selling them outside the gift shop - there are always local vendors that are allowed to set up in Children's. It is a little pink knit cap with tons of pink flowers on it and the flowers have jeweled centers - totally Anna-riffic. :)

7. Also today Sam got his first teaching on how to give Anna IV meds at home. I was going to try but I just can.not. do it yet. Tomorrow they are coming back for another teach and a test - prepping us to hopefully go home on Saturday. SO Scary! But, I guess at least now he gets to worry he'll do something wrong too ;)

- I feel like there should be ten but this is really long and I am so tired - I need to leave it unfinished.

Oh Oh OH! My randomness, might get me to 10 yet.

8. I am reading a pretty good book for parents of cancer patients, Anna's Social Worker gave it to us our first week (I think it was her social worker). While it is a good read, I really would not recommend getting it. One of the things it says is that most parents get sick a week or two after their child's diagnosis. I guess that explains the cold I've had for the last week and a half! There are a lot of good take-aways from this book and one of the funniest things I've read is from a parent - posted on a bulletin board in an Oncology wing.
How do I feel? Don't ask!...aside from nervousness, irritability,
exhaustion, faintness, dizziness, tremors, cold sweats, depression,
insomnia, muscle pains, mental confusion, internal trembling,
numbness, indecisiveness, crying spells, unsocial, asocial, and
anti-social behavior...I feel fine...Thank you.

Now, I don't feel that bad and I really don't mind when people ask me how I feel, but it is funny.

9. Anna has chemo-brain. I've read about this, the chemo makes them fuzzy and foggy. Add to that the sleeplessness, the sleepiness, the pain, the pain meds, the chemo, the anesthesia, the uncertainty - plus all the side effects of all the different meds and cancer patients have it pretty rough. I was not quite prepared for it to happen and happen so quickly - as with most things lately - they are happening much more quickly than I expect. Anna has experienced a lot of side effects but mostly treatable thus far and actually quite mild except for the jaw pain. Today after her biopsy she was waking up - so not only the anesthesia but also her generalized haziness lately and she asked for graham fish and gold crackers. Tonight she was trying and trying to remember a place that she loves to go and couldn't remember the name. I also read that a lot of kids have trouble learning and retaining information, possibly for life, after undergoing treatment. :(

10. Lastly, mostly because I was so close I had to finish it out. This should probably go with the Ella section but whatever. Oh, Ella had a great report card - that's good news too! I think her teacher likes her more now, I'm sure it has nothing to do with Ella's work. :) Anyway, the book also talks about bringing gifts or cards to the sick child and that some families instituted a rule that a gift for all children or no children. That is not happening at our house and we've discussed reasons why and that different kids need different things at different times and that we'll do our best to see that everyone gets what they need but that it won't always happen but we all have to try our best. But, a good take-away from the sibling perspective portion of the book was to ask the healthy child, "How are you doing? How are you feeling?" Basically to recognize the healthy kid and to not just always ask about how their sister is feeling - now, we have been incredibly fortunate with EVERYONE and taking care of and looking out for Ella. This was a good reminder to me to make sure that she and I have conversations that don't just discuss Anna and her treatment and hospital stays. To let her to be silly even when I am so not in the mood to listen for the 1100th time about the singing bathtub that sings pop songs. :)