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.

Papers conveying the summary of genetic testing and presence of Ph-like ALL.
Our exhausted little guy.

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.

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I am a husband, father of 3 amazing kiddos, two-time Emmy award winning solution architect & meteorologist, and I love to continuously create & learn new things.

2 Comments

  1. Lisa Goldade Reply

    Too cute! Love to see your little guy smile 🙂 We miss you Harvey, love you !

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  2. Rhonda LeSage Reply

    Thanks for the video, Joe! His appetite is unbelievable ! Are they expecting him to gain weight? I suppose his body needs a lot more nutrients to counteract the treatments.

    Dear Harvey,

    Today we learned about seasons. Do you know how many seasons there are? I will give you a hint. How old are you? Well, that’s how many seasons there are! Can you name any of them? Even though spring started last week, it still feels like winter here in Minnesota. Our friends are still wearing their snow pants outside for recess even though all the snow melted. Which season is your favorite? If there was a 5th season, what would it be? I wouldn’t mind a longer summer and a shorter winter.

    We started reading The Little Engine that Could today. Have you ever read that book? I know you would appreciate the different trains in it. There’s even a roundhouse similar to the one Thomas, Percy, &
    Gordon go to.

    We got a new solar system puzzle, and I wish we could build it together.

    Joke of the Day: What is Sonic the Hedgehog’s favorite season?

    Spring

    Love,
    Ms. Rhonda

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