7:45 pm: Harvey simply amazes me. He is solution-minded and logical. He absolutely HATES taking numerous crushed pills orally every day because, without a doubt, they have a horrible taste! After a quick discussion with mom this morning, he learned that it’s possible to swallow them whole without tasting them. And that’s all he needed to know. As of today, he swallows his pills whole! This is going to help tremendously with all new oral meds coming soon. This has been a great day! (And it started off with a dead battery in our van, causing the twins to be late for school!)
3:30 pm: The phone call we’ve been both awaiting and fearing came this afternoon at 1:23 pm. Dr. Miller called to share the results of Harvey’s bone marrow samples taken Thursday last week. Here are actual excerpts from Dr. Miller combined into a meaningful summary:
“We look at several different tests. They’ve all come back at this point. We didn’t see any evidence of actual leukemia under the microscope. Then, we got the result back from the FISH testing, which is looking for this CRLF2 rearrangement in any of the cells of the bone marrow. We did not find any cells with this rearrangement. 0%. That’s 0 out of 800.”
“When they did the flow-based MRD at the lab in Seattle they found a tiny population: 0.19% of the cells that looked, in terms of the proteins on the surface, identical to Harvey’s initial leukemia. This is a very specific, sensitive test and it’s finding an extremely low level of disease that is still present. These are extremely good results. He’s not completely MRD negative by the MRD flow test, which would need to be 0.01%. But he’s very, very close. I just want to say congratulations! This is a really impressive amount of leukemia that has been cleared out.”
We expected to hear that Harvey would be MRD positive, and he is. This means he still has detectable leukemia and is not yet in remission. But today, we are thrilled to hear just how close he is to remission! Just 0.19% of the cells detected in his bone marrow are cancerous. This number needs to be 0.01% or less to be considered MRD negative. We’ve only been through the very first stage of cancer treatments (induction), and typically the results are not this promising for patients with Ph-like ALL like Harvey. The bone marrow for Ph-like ALL patients often doesn’t respond well, if at all, to this first treatment. I am cautiously optimistic that, even though we do not have a true MRD negative result, remission is within reach and that this leads to a better prognosis. Harvey will begin his next round of treatment, called consolidation, late this week or early next week.
With awareness of the long path ahead for Harvey and our family, we take this moment to celebrate with you! We are on the road to getting our happy and healthy boy back. We could not ask for or want anything more.