11:30 pm: A sleepless night is underway for Harvey with bouts of vomiting followed by acute, short-lived migraines in one to two hour intervals. After throwing up, he immediately grabs his head and cries from migraine pain for 10-20 seconds. (His care team believes this is due to blood pressure spikes while vomiting, enhanced by his low red blood cell count, causing painful short-lived migraines.) He received his 5th and 6th dose of rylaze this morning via a shot in each thigh. As unpleasant as intramuscular injections are, the side effects of rylaze have been much more unpleasant. It seems any form of asparaginase causes fevers and/or nausea (now with migraines), and rylaze is certainly no exception. His little body continues to be punished by the ever-changing regimen of medication and chemotherapy. More snuggles, backrubs, consoling, and laundry to come overnight.

Rocking with an exhausted Harvey this evening between rounds of vomiting.

Harvey’s latest complete blood count today shows his immune system continues to dwindle, now to the point where he’s again severely immunocompromised. His ANC is down to 0.070 and will need to rise to at least 0.750 before he can begin his next round of treatment. Next Friday, July 8th, he’ll have another bone marrow biopsy to test for any detectable cancer left in his body. We are longing for the day when we learn that our boy is in remission, a.k.a. minimal residual disease (MRD) negative. That day is hopefully just a week or two away. If, for some reason, detectable amounts of cancer remain present, a bone marrow transplant may be the next option for treatment. Uncertainty is the only thing we’re certain of at this juncture.

The upcoming weeks will bring big news that will determine the next rounds of treatment. For now, we sit and wait impatiently, comforting and loving up on our warrior every step of the way. As we continue to navigate the daily highs and lows of a pediatric cancer battle, we can’t thank you enough for your support and messages of love and encouragement! We read every word and take them to heart. ā¤ļø

Harvey gets a new toy after each round of rylaze shots.
Waiting for today’s rylaze shots and port access in his warrior wagon.
On the road back home after another tough day.

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

4 Comments

  1. I can’t imagine how difficult this is for you all. Hugs and prayers every day!

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  2. Kathy officer Reply

    My heart is so heavy for your little manand all all we can do is continue sending prayers your way. God Bless you all. Thank you for update.šŸ™šŸ™šŸ™šŸ™šŸ™ā¤

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  3. MaryLou Martin Reply

    Iā€™m fasting and praying for our Harvey! With an aching heart I pray for healing and complete remission!

    3

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