Day 46 – May 3, 2022

11:00 pm: Harvey’s procedure went well today. He was put to sleep (thanks, propofol!) and had chemotherapy administered intrathecally at 8:30 am. Typically, he’s only asleep for about 15-30 minutes, but wakes up with another battle wound on his back. This afternoon was the first time he’s complained of back pain and he now has medication onboard for pain management. Hopefully this won’t be a persistent side effect for the many more spinal taps and bone marrow samples to come. The familiar routines of clinical procedures and appointments have made each trip a little more pleasant for Harvey. There’s certainly some level of comfort in knowing what’s to come. He still can’t wait to leave, though!

Today’s medical menu.

There’s something peculiar that I wasn’t aware of prior to this medical journey. Many people who receive their medication via port can experience a sensation of taste when getting medications/liquids pushed into them. Today, as Harvey was receiving his propofol via injection, he started screaming at me to “make the bad taste stop!” I can’t fathom this experience. He was happily watching his iPad, completely unaware that he was receiving propofol. He immediately had a look on his face indicative of having tasted freshly squeezed lemon juice, screamed for the taste to go away, then drifted off to sleep moments later. It’s disturbing to watch and is unpredictable – it happens a lot, but not every time.

I haven’t fully addressed another major focus point for us currently: Harvey’s need for physical therapy. He now has physical therapy appointments at the clinic regularly to help regain his strength. A typical appointment is a half hour long and generally serves to assess his needs, measure his progress, and assign new physical homework for Harvey (implemented by mom and dad). The first round of cancer treatment, induction, really did a number on him. His leg muscles are most impacted. He now has a completely different gait and becomes very winded with even light walking. The 28 doses of steroids he received during his first month of treatment has likely caused atrophy of muscle fibers in his legs. Today, as I watched him struggle to get off the floor from a sitting position without using his hands, the realization of how weak he really is hit me hard. This is another item (on an already lengthy list) that a leukemia patient must address/overcome.

We’re often reminded by Harvey’s care team of how awesome he is doing with treatment. A lot of the ugliness I’ve described since March 18th is really just considered typical side effects and expectations of cancer treatment for a typical case of acute lymphoblastic leukemia. If this is what good looks like, I can’t imagine bad. Next Tuesday, Harvey will receive another dose of pegaspargase. This is often referred to as “the dreaded second dose.” In roughly a third of patients, anaphylaxis occurs within the first minute of receiving the medication. This is why pegaspargase and EpiPens go hand-in-hand. If Harvey does have a reaction to this medication, he’ll then switch over to a series of weekly intramuscular injections of a different medication (asparaginase erwinia chrysanthemi). Concisely, he’ll have 3 very painful shots into his muscles each week. We dread the upcoming possibility of this occurring.

Harvey’s latest blood draw this morning revealed that his ANC (immune system) has been cut in half over the past week (as expected) and he’s not yet needing a blood transfusion. That’ll likely be on the agenda for next week. He will also stop taking amlodipine, which was needed to lower his high blood pressure caused by steroids. We anticipate no longer needing this medication. Two less pills per day! Horray!

In summary, today’s procedure was very normal for Harvey. I only share the fine details with you in hopes of defining what “normal” looks like for us currently. Our next appointment isn’t until Friday and we are hoping for a quiet week at home with plenty of time spent outside as warmer weather (for Minnesota) moves in! I’ll check back in every few days during our quiet times, and vow to post updates immediately when we have any new medical information to share. Remember: Less frequent updates indicate all is quiet (as it can be) on our side. 🙂 Thank you so much for checking in on Harvey & our family! ❤️

Obligatory on-our-way-to-the-clinic photo.
Asleep moments after his spinal infusion of chemotherapy.
He said “Uno!” while posing for this photo.


  1. Joe, just leaving a note to say that you, Harvey, and your family are in our prayers. I’m following along with your updates and I hope they become less and less frequent for good reason. Warm thoughts to you all.

  2. I don’t think I have ever read a more enlightening, honest, and heart wrenching journal of the horrific journey of a leukemia patient and the family that love him, written in a straightforward way. It is one thing to write the details of watching your beloved child have to undergo this treatment, it is another to be totally honest about the emotions, fears and heartache. We have such admiration for our brave son, Joe, his equally heroic wife, Lindsey, and the sweet and wonderful Goldade children that live this every day. We love you all💕.

  3. Part of my reply was lost….bravest and most heroic of all is the little boy who continues to amaze us with his sense of humor, playful nature and adorable ways. We love you Harvey💕💕💕

  4. Hi Harvey G I MISS YOU AT SCHOOL. THIS IS Gabriel. Hope you are having one of your good days. Ok
    Love ya dude

  5. Lindsey, “Happy Mother’s Day” rings hollow, considering what your child is enduring. How can one be happy in this situation? It’s hard to imagine finding the strength to get out of bed each day, but you get up for “work” every day because your children need you. You don’t get a bonus or a raise for all the extra hours efforts you have put in since March 18. I acknowledge you for your patience, grace, love, and courage. You are an inspiration to every mother. I remember the first time I met you, Joe, and Harvey in my classroom. I appreciated how you both talked to Harvey, the questions you asked me, and how you shared Harvey’s excitement about starting school. Seems like a lifetime ago because so much has changed. Harvey is missed at school more than I can put into words. His light shown so brightly, and he was so easy to teach because he LOVES to learn, and that is because of your mothering and Joe’s fathering. You have done a phenomenal job raising him and Hattie & Henry. Joe is a tremendous writer and recorder of Harvey’s journey, and you are the quiet, behind-the-scenes person. My wish for you today and every day is to find joy in the smallest things and that that joy gives you the strength to carry on. Thank you for all you do!!!

    Joe, thank you for keeping us so informed. As difficult as it is to watch, Harvey’s treatment is having positive results.

    Harvey, we are doing a unit on dinosaurs. Since dinosaurs are extinct, the only way we can learn about them is through the fossils that we find. What are fossils? Did you know that there are at least 3 categories of fossils that help scientists learn about extinct animals like dinosaurs? Impression fossils like footprints (My family visited a place in Colorado where we saw dinosaur footprints.), trace fossils like coprolites (that’s poop), and replacement fossils (ammonites, orthoceras) are found all over the earth. Have you ever found a fossil? There’s a place called Lilydale Regional Park in St. Paul that is full of fossilized sea creatures, but you need a fossil hunting permit to look for fossils there. I’m going to bring some specimens that I found there 20 years ago and put out a fossil cleaning work for the kids to do.

    Joke of the Day:
    Q: What do you call a fossil that just lies there?
    A: Lazy Bones!!

    I miss you Harvey G!


    Ms. Rhonda


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