8:30 pm: Harvey continues to lose his energy and strength (as planned) as the effects of his treatment are in full force. He wakes up and is active for a few minutes at a time, then asks to return to bed shortly thereafter. The next big treatment for him will occur on Friday, March 25th. I will post updates as we approach these major milestones of treatment and explain the process, how it affects him, and what outcomes we hope to achieve.
Before I type another word, I need to take a moment and call out the amazing care providers and staff that have kept our baby alive at Children’s Minnesota Hospital. I’ll preface what I’m about to say with this: No matter where you receive health care, you always need to be the biggest advocate for your child’s health. As a parent, I’ve taken notice that Children’s Minnesota Hospital is here to support not just the physical needs of their little patients, but also invest in the resources needed to support their emotional, social, and mental health. What a huge difference this has made. Case in point from yesterday: We were given books, stuffed animals, play medical equipment, and a deep discussion of how we can explain to Harvey what’s going on in a way that he’ll understand, how to explain to his siblings what’s happening, and how to set expectations for dealing with the unknowns, fear, and pain that comes with cancer treatment. There are no less than 10 different hospitals we could transfer to within an hour drive from where I sit and type this update. We’ve done our research and have soul searched about moving to a different hospital because, again: We are the biggest advocate for our Harvey’s health care. Our experience here has raised the bar of what we should expect from in-patient hospital care for pediatric patients. We are in awe and are so thankful to be here at Children’s Minnesota.
Before I close the laptop tonight, I’ll leave you with a few pictures that capture the essence of our day 4. These are only a few pictures showing off some of the generous gifts Harvey received today. Goodnight, and thank you so much! 🙂
3:10 pm: Our boy is awake and ravenous. A welcome surprise! 🙂
1:50 pm: The complete dose of pegaspargase has been administered and no side effects were observed – so thankful for this! Harvey continues to rest in bed, completely covered by his blanket (to hide from “all the doctors”). Julie, a wonderful nurse practitioner, shared that Harvey’s blasts (young, immature cells that help leukemia cells grow and accumulate) have decreased from 87% 4 days ago to 3% as of this morning, and white blood cells went from 210,300 to just 8,700. His cancerous cells are dying and his immune system is weak, which is part of the master plan for treating his type of acute leukemia. We are right on schedule. As a parent of a child with acute cancer, it’s nothing short of a miracle that we have treatments to kill cancer cells at all. At the same time, watching your child being treated feels like consenting to poisoning them. I know we are not the first to be on this same journey, and unfortunately we won’t be the last. The very hospital room we occupy has seen the same trials and tribulations by countless other families with children who’ve experienced many different outcomes. I’m blessed to report that we’re trending toward positive outcomes at this moment in time.
12:34 pm: The last 90% of the pegaspargase dose is now being administered.
11:35 am: His injection of pegaspargase has started. 10% dose for 1 hour, then the last 90% for 1 hour. This is a medication that sometimes causes anaphylaxis, so the team is monitoring him closely.
11:15 am: It’s been a fun morning with Harv filled with matchbox cars, trains, Candy Land, and going for walks. Today is the first time we’re really starting to notice his lack of strength along with tiredness. He has returned to bed and is now sleeping peacefully. Our health care team is currently giving him the pre-medications (notably Benadryl, Tylenol, and an additional steroid) that will hopefully help keep the side effects minimal or non-existent during his injection of pegaspargase.
9:00 am: Harvey had a fairly restful night with lots of bathroom breaks due to all the fluids he’s receiving. We introduced him to the cupcakes he requested yesterday. Ironically, we’re now missing a cupcake – so if you happen to see a cupcake sitting around somewhere, please let Harvey know. 😉 Today will be full of challenging new medications and we’ll need to monitor him for signs of allergic reaction. His current medication regimen continues to make him very irritable and upset, especially when vital signs need to be taken every few hours. We are heading into day 4 still on a high from the good news we received yesterday, yet mentally preparing ourselves knowing that every day won’t be as great.
Last evening, Harvey’s pre-k teacher, Ms. Rhonda, sent the class’ lessons for Monday. We shared this with Harvey and he’s so happy to know what his classmates are working on, and led to a great discussion about planets, their moons, and outer space. ❤️
Lindsey and I are overwhelmed at the support we’re receiving. Thank you so very much, truly, from the bottom of our hearts. We’ve been so focused on Harvey and our other two kids, trying to find ways to give them attention they need, that it’s hard to really know what we need at this point. The love and thoughtful messages we’ve received, our friends and family who have put their lives on hold to help us, the thoughtful, surprising gifts for Harvey and our family has received. We are at a loss of words of convey the amount of gratitude we have for each and every single one of you and what you have done for our family. Everyone has their own struggles, responsibilities, and challenges in life. We are no different. And we’ve witnessed an outpouring of people putting their own aside to recognize ours. It’s overwhelmingly impactful. Sincerely, we don’t have the words to thank you.
12:30 am: Just published “Harvey’s Journey Begins: Meet The Goldades (March 18th, 2022)” that introduces our family and how Harvey ended up in this hospital. Harvey continues to sleep peacefully this early morning. ❤️