MRD is .45%

I am very sad today as I write this entry. We did not get the news that we were all praying for on the minimal residual disease. We were hoping that the MRD would be less than .1% and she would follow the "regular" course of treatment. This did not happen. Her MRD was actually at .45%. I knew when Dr. Broxson walked into the room that he was going to tell us this. I could tell because he was carrying his giant post it note sheets of paper to post on the wall and several books and binders. I knew we were in for a new medical lecture.

So what does this mean? First of all, it is confusing. I read and research about leukemia all the time, and it is even confusing for Jerad and I. Basically, how quickly the leukemia cells disappear after treatment starts is a factor in her prognosis. If there is zero blasts in the bone marrow after 14 days, the child is considered a early rapid responder. Remember Day 14? The euphoria we felt because she did in fact meet that criteria. She was clinically in remission at that point. But now scientists are using special biochemical techniques to measure the residual leukemia....this test is 1,000 times more sensitive than the one that measured her at zero blasts. And she does have that .45% of residual disease.

For Ally, this means a change in her treatment plan. Instead of having 7 months of very intense weekly chemo, she will now have 11 months. Towards the end of the 11 months she will also have to undergo 6-8 doses of cranial (head) radiation. This will be done in Cincinnati. All of this is done in an effort to keep her survivability rate at 80%. Children with the MRD do have a lower chance of survival because of the increased chance of relapse. We are hoping that the research studies and the more intense treatment brings her percentage up. Even in the 90's, children with this MRD did not fare as well. Dr Broxson showed us a chart on this and I really wish I never saw it. But he also reminded us that they have made progress, even since the 90's, with every new clinical trial that occurs. We won't know how her clinical trial fares until years from now, but he said they always improve upon the one before it. And she's a girl, and she's less than 10, all good things.

Here is the real kicker. The statement that pretty much knocked me (and my husband) out of the chair. They have never had a case where a child was 0% on the Flow Cytometery test (the one they did locally) but showed a positive MRD when sent out. Never. Maybe somewhere in the US, but not in their experience. So here it goes...my bad luck...whenever there seems to be a very small chance of something happening, well it happens to us. Ask my sister or my Dad about that. We dealt with that all the time with Mom.

Ally really doesn't understand much. She was there as the doctor told us everything, but I can't imagine that she grasped too much of it. She knows she is going to have to have more medicine and it is going to take longer. I did break my "no sorrow" rule and cried in front of her today. In my opinion, today was even worse than when she was originally diagnosed. Jerad and I are pretty much devastated. We will eventually build up the resolve and the strength to guide her through this, but today we are down. We are sad. Who wouldn't be? I feel bad even posting this and bringing down the army.

On a brighter note...is this brighter? i don't know...her ANC was over 2000 today. Which means that she can begin the consolidation phase of her treatment in the morning. She will have another spinal and a 30 minute dose of cyclophosphamide followed by four hours of fluids. She will also start two doses of daily chemo. One is Cytarabine, given through her port, and we will have home health nurses come to our house to administer this. She will also take Mercaptopurine chemotherapy by mouth for the next 14 days. We will spend the fourth of july day off of work down at Children's. He told us plan for eight hours. I am anxious about starting a new phase and will have to learn how all of these new drugs affect her. I hate the side effects.

But since her ANC was over 2000, she was allowed to go anywhere today. That isn't going to happen all that much so we felt we had to take advantage. So Jerad took Ally, Madison, and Evan to the Hannah Montana movie this afternoon. A little diversion before we start back up.


Sorry to disappoint so many followers on this day......