Friday, July 10, 2009

Day 42?

Is it Day 42? I can't remember anymore. I think it is. Poor Ally had another LONG day at the hospital. Just when I thought it might be quick, yep, she needed more blood. Her hemoglobin was 8.2, which after 8 hours NPO (no food or drink) was actually probably even lower. So she had another spinal tap, followed by a quick dose of ARA-C chemo, and then we waited and waited for the blood. First they have to do a cross match. Every time they check her for blood type etc...which I am not sure why they do that each time, I need to ask. Then we wait and wait for the blood bank to send it up. Then it takes 3-4 hours to transfuse. And by the way, for all of you special Army people who have been offering to donate blood for her, they don't really allow it. I asked today. You can go donate blood in her "name" to replenish the supply that she used, but we cannot have a one-for-one blood donation. But thank you to all those kind souls that offered (the Martins, Joey, Kim Jaros, guys are great) Her blood type is AB+ (which I think is different than what I wrote before) but she can get A, B or O blood because her type is positive (whereas negative you cannot).

Her best buddy and cousin Bella and her Aunt Tara came to the hospital today. Having Bella there really helped her to pass the time. She is getting bored and tired of it all. You can only play Uno and Monopoly so many times. They even started hooking up some of Ally's extra wires to her Bobo (the white seal seen in every picture) and laughing and then I heard Ally say something about putting numbing cream on his port. Awwwwww.

We had the third partner in the hemoc group of doctors today. His name is Dr Dole. (that is pronounced Dol-ay). We had only met him briefly on one of our in-patient stays. He talked to us at length about her MRD being .45%, which is above the acceptable threshold of .1%. He suggested that we talk to Dr Broxson about getting a repeat MRD at the 3-6 month mark. This would be outside of the study that she is in. If she was still high at this point, he thought we could then consider an alternative and more intense treatment. So I am thinking what is more intense than what we are already doing? And he mentioned the dreaded words: bone marrow transplant. But then we have to consider that even with the higher MRD, about half the kids will be cured anyway. But half won't and will have to do something else. It is all too much to think about. Jerad and I both have the same accounting brain...numbers make us happy/sad/confident/not confident, etc. It is all so hard that I just want to push it out of my brain anyway. I can't even go there. I can't. It is in god's hands.

Which leaves me to the prayer above all prayers. Please pray that she will be cured just like everyone else that we have met that has gone down this road. Please pray that a bone marrow transplant will not even need to be in the realm of possibility for us. Enough is enough.


  1. I am praying. Praying Ally will be healed . . . cured. Your army is behind all of you-- all the way. Ally is strong and so are you. She WILL beat this.

    QBD by Amanda

  2. Janel, I just met a guy from Xenia today whose 3 year old son is in treatment for ALL at Dayton Children's. I asked him to keep an eye out for a beautiful 7 year old girl named Ally, and I said I'd tell you about his son Adam Lewis, who has been in treatment for 10 months now and doing really well. Love to all.

  3. With the uncertainty as to which treatment, how long, bone marrow transplant or brings to mind a really appropriate prayer for you and your family today:

    The Serenity Prayer
    God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

    For all your worry, stress, pain, and concern for Ally, there are things you can change and things you cannot change and what will happen 6 months from now is totally out of your hands.
    Think about today - tomorrow will take care of itself.

  4. Just a note from our personal experience, I have found that Dr. Dole can be a bit pessimistic when it comes to communicating with families. We like Dr. Dole just fine, but he is different than the other doctors in this regard. Andy and I have found much comfort with talking with our primary oncologist (Dr. French) as you probably do with Dr. Broxson. Whoever your primary doctor is, they seem to know best about your child's situation. I hope this might put you a bit at ease.

    Living with cancer has its highs and lows, as you very well know and we pray for more highs in the future.

  5. As a Haem/Onc nurse in Australia, I can tell you that a cross match is needed with every transfusion to check if any antibodies have developed with exposure from the previous blood transfusion, so that she doesn't have any reactions.
    Best wishes for Ally, you & your family.