Day 53 – May 10, 2022

3:45 pm: We’ve arrived back home! Today certainly lived up to all the hype. Ugh! Harvey had and continues having mild reactions to the 100 ml of pegaspargase he received. Nausea and rashes have certainly been problematic, but thankfully didn’t prevent him from receiving today’s full dose. He will receive one more round weeks from now (and we are also dreading that day). But for now, we’re back home and monitoring Harvey closely for more side effects and reactions. I’m not going to declare victory over this day yet – but it feels within reach!

Back home monitoring rashes: Right arm at 3:40 pm.
Signs of reaction to pegaspargase today.

1:00 pm: After an eventful morning, we welcome a quiet afternoon thus far. Harvey is nearing 3/4 (75 of 100 ml) of his pegaspargase administered and is resting comfortably in his warrior wagon watching his iPad.

A much more relaxed Harvey.

10:45 am: Moments after starting his pegaspargase IV, everything in his stomach came up. His care team immediately stopped his IV, we cleaned him up, gave him some medication to manage nausea, and have cautiously restarted his IV again. It’s been a rough morning for Harvey. 🙁

9:55 am: Harvey has received nearly all his pre-medications in preparation for his dose of pegaspargase, which will be administered shortly. Let it be known that he’s ready to go home!

Harvey is not happy that we can’t leave yet.

7:50 am: We’ve arrived at the clinic. I’ll provide updates as Harvey receives his pegaspargase likely sometime around 9:30 am.

Harvey’s medical menu for today.
Playing Ms. Pac-man while waiting in the lobby.

1:00 am: Happy belated Mother’s Day! Although Sunday wasn’t likely the Mother’s Day Lindsey ever envisioned (or wanted), it was unquestionably more meaningful than others. Lindsey and Harvey shared a few hours together at home while I escorted Hattie & Henry to their very first tee-ball game. Absent from our kitchen counter this year was a vase full of Mother’s Day flowers. Cancer patients and those immunocompromised are at higher risk of infection from the spores produced by flowering plants. In place of flowers was something even better: One of Harvey’s first cards with the word “mom” in his own writing! I’ve since laminated his creation to be saved and cherished forever. ❤️

Harvey’s hand-drawn Mother’s Day card – His first time writing “mom” by himself.

These early morning updates come naturally when sleep does not. Harvey has a big day ahead with his typical weekly procedure (spinal tap with chemotherapy intrathecally) with one caveat: He will receive his second dose of pegaspargase. Just as a reminder, we are absolutely dreading this medicine today. Here are the details from a previous May 3rd post:

…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.

I hope I can look back 10 hours from now and laugh at how worried I was over nothing. We anticipate that he’ll also need a blood transfusion today. I’ll post timely updates today on the outcome of Harvey’s procedure scheduled to begin around 8 am.

During our last physical therapy appointment, we learned that Harvey’s body has no response to reflex testing. A reflex hammer to his knee brought no response or movement. Neuropathy, or nerve damage/dysfunction, is a side effect that many cancer patients have after chemotherapy. We’re hoping that his nerve damage is and remains minimal, but is something else we’re worried about and will monitor closely. Thankfully, he’s not complaining of any pain and is getting around without too much trouble, even if short of breath and tired. His appetite has greatly diminished, but he continues to eat small portions regularly and we don’t have any nutrition or dietary concerns at this juncture.

Thank you for continuing to check in with us even after a hiatus from updates! We enjoyed our past week together, spending much needed time outside in warmer weather (and we even managed to get a few things accomplished around the house!). Later today, I’ll post a few videos of Harvey’s responses to comments left by his classmates and teacher (thank you so much for writing to him – he loves it!!) For now, here’s a short video glimpse of what the first week of May 2022 looked like from our perspective.

Love, The Goldades

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