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!

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! ❤️