Day 300 – January 12, 2023

11:25 pm: This update should’ve started off with “Christmas is right around the corner…” or “As we head into the new year…” But here we are. It’s been over a month since our last update and today marks 300 days since Harvey’s diagnosis. Without further ado:

Medically, Harvey continues pushing bravely through cancer treatments in the interim maintenance 2 stage. NO MORE INTRAMUSCULAR SHOTS!! This can not be overstated. Harvey had his 30th and last shot of rylaze in his right leg on January 2nd. Rylaze was really beginning to wear him down with miserable nausea side effects as well as wreaking havoc on his blood chemistry and immune system. We are overjoyed to be saying goodbye to rylaze! Diet/nutrition continues to be a struggle at times with periods of not eating anything, followed by periods of consuming copious amounts of very specific foods (easy mac, watermelon, spinach, and turkey sandwiches are his current cravings). He’s lost another 4 pounds over the past 2 months due to nausea, but he’s maintaining a steady weight around 47 pounds. We’re so glad that he didn’t lose so much weight that it became an issue. Over the next years of treatments with steroids, rapid weight gain will likely become an issue again. I’m certain this won’t be the last time we mention Harv’s weight. Harvey has remained mostly healthy and at home. On December 8th, he received an intravenous immune globulin (IVIg) treatment to help his body fight off any infections it may encounter. He had a quick visit to the emergency room for a fever on Dec. 14th and he exhibited symptoms of a mild cold around Christmas that his body was able to fight off, thankfully. December was full of scheduled visits to the clinic – over 36 hours was spent getting chemotherapy, fluids, and medications. He’ll wrap up the interim maintenance 2 treatment stage this month and will begin long-term recurring maintenance stages every 84 days (about 4 per year) for the next 2.5 years. He has been the epitome of strong and brave out of necessity & we are so incredibly proud of him!

December unexpectedly presented us with a new medical concern. On December 29th during a routine well child appointment, Harvey’s sister, Hattie, was diagnosed with a very low grade heart murmur (which apparently is fairly common in children and not usually of concern). Out of an abundance of caution, she received an electrocardiogram (ECG) on December 30th which showed concerning results. There were indications that she had an enlarged heart – left ventricular hypertrophy (LVH) to be exact. LVH is serious and it’s typically a symptom of a another issue. Since an ECG can only indicate LVH, Hattie needed an echocardiogram to be truly diagnosed. Ever since Harvey’s cancer diagnosis, it doesn’t take much to trigger and induce panic in us. So after many sleepless nights and days of cardiology reading/research, Hattie had an echocardiogram on the morning of January 5th. At 2:10 pm, we received the results which showed everything was normal. Happy New Year – What a huge relief!

Medical updates aside, we had a memorable and unexciting (in a good way) December and beginning to 2023. The weather here has been clear and still. We have snow clear up to our butts and it’s still falling! We received an astounding 42″ of snow over the past month (typically we average 51″ in an entire season). A brief break was taken from shoveling snow to celebrate Hattie’s & Henry’s 7th birthday on December 23rd. The twins thoroughly enjoyed opening birthday presents (with Harvey watching in protest wanting to open presents, too), eating their favorite foods (Hattie chose a well rounded menu of donuts for breakfast, McDonalds for lunch, and Pizza Ranch for supper), playing games, and smashing open a large, shimmering rainbow piñata. Harvey was much happier the following day when, he too, was able to open his presents for Christmas. Since we were unable to be together as a family for Thanksgiving, we roasted our meant-for-Thanksgiving turkey and had quite the Christmas feast (with all credit going to Lindsey). During Christmas break, the kids enjoyed playing outside, Hattie continued playing hockey on team Islanders in the rookie mites league, and we were able to spend quality time together as a family. That said, we are SO thankful that school resumed for Henry and Hattie on Jan. 9th! 🙂

That’s a quick summary of our past 41 days. We’re blessed to not have needed to post an update more urgently. Thank you so much for all your continued love and support! We couldn’t do this alone and we are so grateful for amazing family and friends. We wish you & family a happy and healthy new year!