The MRD is only one factor that may predict a child's prognosis. The other factors feel like they are already stacked against us: age and her chromosome translocation. I was so very hopeful on the MRD results.
Monday's CBC result was extremely promising; I teared up when I told Susie.
WBC: 1.59
Hgb: 10.1
Hct: 31.1
Platelets: 264
ANC: 1081 (Over 1,000 is considered normal, and as you may recall the ANC is what we use to judge how strong her immune system is.)
Her labs are normalizing, and as her doctor Elaine put it, "That's what happens when the kid goes into remission." So we went home Monday night with a light heart full of optimism. Also Abigail tolerated the LP and BM better than when she had those procedures at UW. She had no spinal headache whatsoever. I did have to be demanding (read: bitchy) about the pre-bolus. And after I talked to the anesthesiologist and explained what happened before, he reassured me that he felt this would not happen again.
It's hard to trust. Especially when you don't feel heard.
She was able to lie flat for a little over an hour post-procedure, she got some tylenol and a caffeine tablet. Our plan was to go to the Ronald McDonald House Monday night, but she felt so well, we decided to just go home.
Yesterday we were told her MRD, unfortunately, was positive. I had a small breakdown, fear crept in. Abigail was sitting at the dining room table with her tutor doing college algebra lessons, and I was on the couch feeling myself fall into the dark hole. I started hearing that voice -- you know the voice, the one that's always there being negative. The voice you don't even realize you hear sometimes. The voice you have to fight to be louder than. "What is the point of anything."
After a pretty lengthy discussion with both Elaine and Maureen, I felt this news was less dreadful than I initially did. Her MRD result was 0.036%, which I'm told is still extremely low, but also definitely positive. This means she is in a very high risk category for disease relapse. Elaine told me at this point we should not be worried about Abigail beating this cancer, but about it coming back. She reassured us we are already in the very high risk category because of her age and her genetic report, so our plan does not change. We continue with consolidation (the next phase) which lasts about 2 months. At the end of the consolidation phase we will re-test the BM and hope for a negative MRD at that time.
I tried not to ask, and I tried not to want to know. But I asked anyway.
What if the MRD is positive again?
We will consider transplant.
But I'm perpetually working on living in the moment. And in this moment Abigail is doing college algebra with her tutor. She has minimal pain, good blood counts, acceptable energy level. She is smiling and laughing. She has friends who love her and she is planning on going to homecoming in a few weeks.
In this moment we needed to decide whether or not to stay on study or go off. I wanted to go off study. Elaine gave us her HOME NUMBER to call her last night if we had any questions about the study at all. Who does that? I'm extremely impressed with her. We presented the options to Abigail, after explaining best we could what her MRD results meant.
We are staying on study. Today or tomorrow we will know the results of the randomization and will know which arm she has chosen (which treatment plan). The study for those readers who are so inclined to want to know such a detail is called AALL 1131.
Monday if her counts are still good, she will have her port placed, and we will start Day 1 of consolidation which consists of a very, very long chemo day. (Here is a website that explains what a port is. Right now she has a PICC line.) Here we go, another beginning. Another Day 1.
Her labs are normalizing, and as her doctor Elaine put it, "That's what happens when the kid goes into remission." So we went home Monday night with a light heart full of optimism. Also Abigail tolerated the LP and BM better than when she had those procedures at UW. She had no spinal headache whatsoever. I did have to be demanding (read: bitchy) about the pre-bolus. And after I talked to the anesthesiologist and explained what happened before, he reassured me that he felt this would not happen again.
It's hard to trust. Especially when you don't feel heard.
She was able to lie flat for a little over an hour post-procedure, she got some tylenol and a caffeine tablet. Our plan was to go to the Ronald McDonald House Monday night, but she felt so well, we decided to just go home.
Yesterday we were told her MRD, unfortunately, was positive. I had a small breakdown, fear crept in. Abigail was sitting at the dining room table with her tutor doing college algebra lessons, and I was on the couch feeling myself fall into the dark hole. I started hearing that voice -- you know the voice, the one that's always there being negative. The voice you don't even realize you hear sometimes. The voice you have to fight to be louder than. "What is the point of anything."
After a pretty lengthy discussion with both Elaine and Maureen, I felt this news was less dreadful than I initially did. Her MRD result was 0.036%, which I'm told is still extremely low, but also definitely positive. This means she is in a very high risk category for disease relapse. Elaine told me at this point we should not be worried about Abigail beating this cancer, but about it coming back. She reassured us we are already in the very high risk category because of her age and her genetic report, so our plan does not change. We continue with consolidation (the next phase) which lasts about 2 months. At the end of the consolidation phase we will re-test the BM and hope for a negative MRD at that time.
I tried not to ask, and I tried not to want to know. But I asked anyway.
What if the MRD is positive again?
We will consider transplant.
But I'm perpetually working on living in the moment. And in this moment Abigail is doing college algebra with her tutor. She has minimal pain, good blood counts, acceptable energy level. She is smiling and laughing. She has friends who love her and she is planning on going to homecoming in a few weeks.
In this moment we needed to decide whether or not to stay on study or go off. I wanted to go off study. Elaine gave us her HOME NUMBER to call her last night if we had any questions about the study at all. Who does that? I'm extremely impressed with her. We presented the options to Abigail, after explaining best we could what her MRD results meant.
We are staying on study. Today or tomorrow we will know the results of the randomization and will know which arm she has chosen (which treatment plan). The study for those readers who are so inclined to want to know such a detail is called AALL 1131.
Monday if her counts are still good, she will have her port placed, and we will start Day 1 of consolidation which consists of a very, very long chemo day. (Here is a website that explains what a port is. Right now she has a PICC line.) Here we go, another beginning. Another Day 1.
"Be brave my darling.
You have faced dark times before
and you're still here now."
C.T.L.
