Today was good… And then it was bad… But in a good way… I think 🤔
He fell asleep in his brothers lap within 45 minutes of being connected to the drip. Out of the 51 chemo sessions, he's only slept during four of them so far. It's a blessing to watch him rest, but it's so heartwarming on the days where he's chasseing around the oncology ward winking at all of the nurses.
Whitten John has not had a chemo session in 34 days. This is his longest stretch in between treatments in over a year. For the last seven days we were granted a "bonus week" (which means he just didn't qualify for chemo because of a cut on his ear which can be very dangerous the way his numbers bottom out). BUT his ANC count was almost normal which means we had the week of a lifetime - play dates, movies, park hopping and even a trampoline park! We went on so many adventures, and he just seemed like a normal happy two-year-old full of energy, sass and love (let's not dive into the Footy pajamas, sensory issues and sleep challenges😂)
So I wasn't quite sure what to expect today.
It was as if he got a taste of what normal felt like. A beautiful blissful taste.
But today we were all brought back to our present reality as the clofarabine chemotherapy runs through the course of his body, fighting off Langerhans Cell Histiocytosis… the cancer that has been eating away at his bones.
I am shocked at how this slight change in his treatment road map (that's what they call it in the cancer world) made his side effects more noticeable.
He's never sick on day one… At least I didn't think he had been. He gets an extra hour long drip of anti-nausea medication called EMEND that is supposed to last for a week in addition to two other anti-nausea medication's. He usually doesn't start vomiting until day 4.
But today (day 1), on our way home, he needed the air conditioner up – all the way up – MORE. I watched for the deep breathing to begin and had my 16 year old so grab the puke bag - ready to catch.
There have been times where we come home from chemo, and the baby boys would jump on the trampoline for over an hour…
Today he asked me to carry him over to grandmas because he was too tired. And he asked to return back home within minutes… Back to his comfort zone… Back to his soft navy blue blanket laid across the couch.
He managed to play with his brother at a new water table that had been delivered, (one of the many fun things that has been happening for us during chemo where random people send surprise toys or gifts as treats on these difficult weeks) but you could tell he was just pushing through… Wanting to be involved with his mind and soul, but his body just couldn't keep up.
When he asked for his ice cream cone – a very normal occurrence for my little chemo baby - he held it gently in his hands while he stared off at "Bo on the Go" playing on our living room tv, ice cream dripping everywhere. His taste buds already changed just like that.
Switching back to an old-school classic, he asked for his salty butter noodles. As I started to make my way to the kitchen, he cried out to be carried along, not wanting me to leave his side - sassier than normal. I started preparing his noodles, and looked back to see him sitting in the middle of the kitchen just slumped over - exhausted.
Back to the couch, we went, returning to the fuzzy blanket safety net, and I noticed how he continuously rubbed his left hand back-and-forth across the pillowcase, as if the material was soothing in a way I would never understand. No - soothing in a way I WILL never understand...
Normally he would feed himself, but tonight he just sat there, sunk into his position, eyes half mast and continuously opened his mouth for more. The noodles likely soothing his belly, but no energy to bring them from bowl to mouth.
He was asleep within minutes.
Today was a good day… And then it was bad… But in a good way.
It connected me with a renewed empathy for what he's going through. His pain and fatigue have been such a part of our lives for over a year and sometimes we can almost acclimate with that and disassociate. But today brought me back to the reality of the truth.
Even when he is putting on a happy face.
Even when he's giving it every last ounce of effort he has to smile.
He is going through the biggest battle of his life. He is a warrior. He is a champion. He is doing his best. And when he has off moments or off hours or temper tantrum's or unique special requests, that will comfort him in this crazy time… He is simply doing his best.
My son is extraordinary.