5:00 pm: Speaking honestly, it’s been a really hard day. We met with Dr. Miller and nurse practitioner Julie late this morning and learned that Harvey’s initial genetic testing results arrived. I’m going to be as concise and (hopefully) accurate as possible with the overwhelming amount of information we received. Indications are that Harvey has Philadelphia-like acute lymphoblastic leukemia (Ph-like ALL). His cancer will likely be more difficult to treat. It will likely be more difficult to get him into remission. Recurrence rates are higher long-term. Prognosis rates have only recently increased in the past years and are a little better in younger patients than adults. He will likely need more specialized treatments for his type of acute lymphoblastic leukemia. The more detailed, complex genetic testing results (expected to arrive weeks from now) will determine what his next round of treatments will be.
All this in mind, none of this new information would change the first round of treatment he’s receiving now. It will only change his future treatments. I’m angry. Broken. Completely unsure of what his/our future holds. It honestly felt hard to breathe at times today. But we are here for Harvey. Strong for him, yet devastated behind the scenes. One day at a time.
Harvey had a rough day with rounds of vomiting, much more pain when doing simple activities, and he was not pleased with physical therapy time. He did not want to be touched. Yet, he still makes me laugh. He now wants privacy when going to the bathroom (don’t we all?). He figured out today that I’m still keeping an eye on him through the small opening of the bathroom door. He growled loudly at me, roared actually, and said “I’ll stop growling at you when you stop looking at me!” These are the steroids growling at me, I know. But the wit of his explanation was purely Harvey. I turned away and laughed.
But, laughter aside, let it be known that today, March 29th, 2022, was a terrible, horrible, no good, very bad day.
9:00 am: It’s been a while since we’ve had time to record a video update, so that’s how we’ll begin our Tuesday. Harvey had very little sleep last night and will likely be napping frequently today.