Friday, June 26, 2009

Day 28

Day 28 seems to be a pivotal date in the world of ALL leukemia. It is the date that the doctors kept holding out there as when the "final" bone marrow test will be done in order to check the marrow for minimal residual disease. I am feeling fairly optimistic that Ally's MRD will be below the threshold and she will indeed move forward into the next phase of her treatment. Dr. French confirmed my optimism today by saying that he also thinks she will be moving out of the induction phase. Of course, there is always a chance it will come back differently. We find out on Thursday morning.

After getting to the hospital at 8:30, they finally did the bone marrow at Noon, followed immediately by the spinal tap. I was pretty annoyed that we had to wait so long, although I know that emergencies do come up. I was just feeling really sorry for Ally because she is not allowed to eat or drink before the procedure. She was crying a lot and begging for a drink and food. So that just made me feel terrible. She was still in EXTREME belly pain today. I think she cried more today than I have ever seen her cry. In her whole life. And that was after being up all night again last night. We just have to get this resolved. We are trying. We are definitely trying.

So my general feeling for Day 28 is that we have hit rock bottom. Which is kinda how I think it is supposed to be, but it just stinks now that we are in the trenches of it. The doctor said to Ally "well you made it through the first month" And I think he was saying it in the sense that it is quite a hurdle that she/we have passed. I do think if we get this constipation issue resolved, she may end up feeling okay later in the week. They kept telling us today that this upcoming week was her "break" because she did not get much chemo today. Just the methotrexate into her spine. That does not sound like an easy thing, but I guess in reality it is a "break"

I hear her crying again, I best go. There is not much I can do except scratch her back and give her a hug. I rubbed her head and sang to her for about 30 minutes tonight just to get her to fall asleep initially. And believe me when I say I am a horrible singer, but I am digging into the bottom of my bag of tricks to try to comfort her. I feel so helpless.


  1. Oh my Ally, I'm sorry it was such a bad day. I wish I could do something too to take away the pain. Maybe try some mineral oil? I want to be able to give you the answer. Hopefully she at least got some chinese that she wanted. Way to go everyone on getting through that first hard month.

  2. Remember how you said your mom was so good to you--doing everything for you while growing up? Sounds like her wonderful motherly instinct has continued on through you. You are a good mom and Ally is lucky to have you. Praying her belly feels better TODAY and she can regain some strength this week.

  3. Janel- thanks for the post, even though it was a rough day. I, like everyone who is reading your post, wish there was something that I could do too for Ally's stomach. I'm proud of all of you for making it successfully to day 28. Hang in there.

  4. Day 28 - a milestone. I feel so sad for Ally - no child should have to endure that pain. You are doing everything that can be done - and then some. Hang in there as best you can - and try (I know - is seems impossible) but try to get a little down time for yourself - just a little time to lean back and let the weight slide off your shoulders for 1/2 hour or so - it will help you immensely.

  5. Janel...

    My thoughts are with you every single day...but I pray today for Ally's resilience...I pray that when she's better she will be gifted with two things...great empathy...and amnesia...i hope she forgets some of the pain and heartache when she's stronger...I hope you know most of all that while none of us around you feel adequate enough when there feels like theres nothing we can do to take her misery away...we are all here waiting to help...all here praying daily and all here with you. Fight Ally....fight fight fight....cause your doing it....and you Janel are doing everything more positive thoughts your way!!!!!!!! Jill

  6. Hugs tonight for you, Janel. It sounds like you need them.