Day 5 in the PICU: Friday, May 7th

The chemo nurses arrive to begin Ronan's chemo IV treatment at midnight. Just a few hours before we had signed all the paperwork on his Pre-Phase regimen for (still suspected, not yet confirmed) Burkitt Lymphoma. It was the "1131 protocol" from Children's Oncology group. Again we were warned of the common side effects of the medication -- the nauseau, foot shuffling, jaw pain / tingling, blood in urine, loss of hair, constipation... it's a long list. His platelets (572) were "remarkable" a strong foundation that would slowly be broken down by the months of chemo along with other blood cells.

Ronan was on a hefty dose of Ativan from nausea the prior afternoon, which was probably a good thing for the chemo administration because he slept through most of it. A couple hours later, he woke up to use the bedside urinal (at this point the hospital was pushing 2x maintenance IV fluids to help flush the high Uric Acid levels in his blood making him feel so crumby) so this was a frequent event for us through the nights, making sleep even more challenging. Still half asleep, Ronan mutters "cookies..." (must have been a vestige of a dream) and then glances at the clock to observe "it's 2:28 in the morning!" His request for privacy to me and the nurse was a humorous, "Now no lookey!"

At rounds later that morning, the team reported on all his labs, which were being done every 6 hours to monitor him like a hawk. Oxygen was a bit low (93-94%) ... they were increasing monitoring with the respiratory team. The right chest tube they put in on Tuesday put out 990 mLs over the past 24 hours -- a malignant effusion related to Burkitt Lymphoma. From a cardiac perspective, there were NSVTs right (Non-sustained Ventricular Tachycardia) last night, just some PVCs (Premature Ventricular Contractions) that are not uncommon during sleep.

That day we enjoyed more walks, and an afternoon on the patio getting some fresh air. Ronan was craving a milk shake so I asked his dad to stop by the Melt for a strawberry shake on the way down. Ronan guzzled it down and started eyeing his dad's chocolate shake. I was so so relieved to see his appetite back.

We also were able to get the brothers together again outside the hospital, wheeling Ronan down with all his telemetry (tely) equipment with the help of his amazing PICU nurse. Brothers are still not allowed inside the hospital because of Covid (just 2 "primary caregivers" who need to remain the same 2 people throughout the entire hospital stay), so I FaceTimed Elliot (through our au pair's phone) from the gift shop so he could pick out a balloon and stuffy for his brother. He picked out a funny-looking gorilla, who he named "Harey," and an emoji balloon with a smily face and sunglasses. He nailed it -- just a perfect reflection of Ronan's personality.

Taylor-Grace (our incredible Child-Life Specialist) joined us for the meeting of the brothers and brought another of the kits she used with Ronan to help explain the situation with Elliot. Ronan was ready to break the news. We all sat down together and as soon as we introduced Taylor-Grace, Ronan jumped it and announced calmly but matter-of-factly: "Elliot, I have cancer." Elliot was speechless. Ronan added on... "it's not as bad as you think actually" and I suggested we use the play dough tools to share with Elliot what it was. This worked super well for Elliot -- he is a a builder by nature, and loved having something to create to explain this scary, amorphous "cancer" word. When he was done created his mass, he picked it apart, bead by bead, handing it back to Taylor-Grace, as if wishing he had the power to do that for his brother. He tried to place the diagnosis in context, comparing it to a concussion he had had earlier in the year, or the cut he had on his toe from dropping a shampoo bottle on it a couple days ago... trying to find some common ground or shared experience with a brother he has shared so much with over his lifetime -- a room, clothing, pets, schools, friends... but Ronan was direct "This is way worse, Elliot." I hugged him and complimented his work with the play dough. I could sense his pain -- missing his brother and mom so much... as we had only 15 minutes with him over the past 5 days. The siblings of cancer kids are dealt a tough hand too. I knew he would need the help of family and friends to step in and fill the void in his life with us taken from him so quickly. I went to work (with the help of my rockstar sister / planner extraordinaire) arranging a series of visitors at our house for the rest of the hospital stay to give Elliot some extra love and affection in our absence.

This is the day our head of school sent an announcement to Ronan and Elliot's classes about Ronan's health challenges. I was so incredibly moved when I read the opening paragraph: "We are a community that supports one another when all is well and when times get tough we rely on the strength of one another. At Woodland our core virtue of compassion is visible each day in small ways and occasionally, an abundance is needed. Now is one of those times." The outpouring of support since has been incredible -- a hospital wall covered by thoughtful notes and pictures sent from friends, meals and gifts for Ronan and his brother dropped at our house, Grubhug gift cards, thoughtful video messages from friends, and even a choreographed song about Ronan produced in music class. I am just so touched and inspired by everyone's support. From the bottom of my heart, thank you, thank you, thank you!

I also spoke with Taylor-Grace before the end of the day about the importance of keeping Ronan's morale high. We discussed how visits with friends (outside the hospital lobby given Covid restrictions) could help him get through this difficult stage and we started to work on approval for that. When I shared with Ronan that we were working to get approval for friends to visit (just as his brother had on Friday), he flashed the biggest smile I'd seen in days. Unfortunately his health was about to take a turn for the worst and that hope would become a distant dream.