Duplicated on our CaringBridge site for permanent record here.
February 13, 2021, written by Mama
88 days in the hospital: 63 in PICU, 25 in the Oncology ward
Yesterday Thomas was declared to be N.E.D. (No Evidence of Disease) and we were joyous, but also shell-shocked. After ten emergency surgeries and so many times near death, we have felt like Charlie Brown trying to kick the football when Lucy inevitably pulls it out of the way (except not funny). Several times during the meeting with the oncologist, he had to remind us staring at him that this was ALL GOOD NEWS. Later I even fell asleep thinking, "Really? Did he just say that Thomas shows no signs of cancer?"
Chris stayed for a Daddy-Son Slumber Party in which they watched Toy Story 2 and Thomas laughed spontaneously for only the second time during his entire hospital stay. Before cancer, Thomas was a Very Loud Child and full of zany laughter, and I can't wait to play with that kid again.
Meanwhile, I went home, tried my hand at making Thomas-friendly homemade pizza for the children (and I'm still terrible at it after trying for 15 years) and then we watched Christopher Robin for the first time. It was a delight so I will include here my movie review, which I write of most movies we watch for my own personal reference.
“Christopher Robin” (2018, PG), review by KTL
This is a delightful live action movie about Christopher Robin all grown up and stodgy, having lost the ability to play and being distanced from his wife and daughter. Using skillful CGI that is pleasing to the eyes, Christopher re-encounters his childhood friends of Winnie the Pooh and the whole group, going on an adventure to save them in which he himself is saved. He rediscovers play, joy, and laughter, reconnects with his family, and saves his company to boot. The humor is wonderful and adults may want a Kleenex nearby. Every single one of our children loved this movie, such that I haven’t heard such loud laughter in as long as I can remember: “I want to recommend this to all my friends!”
When I returned to the hospital Saturday morning, Thomas and I had a good day: We played Zingo and went for a tricycle race in which Thomas completed two entire loops and at the fastest speed yet.
At one point Thomas was tricycling around a corner at a good clip when he nearly ran down two of his surgeons coming to see him. It was the most delightful moment to see their shock and twinkling eyes because they've only ever seen him lying in a bed . . . and they've seen him near death lying in that bed. So they did their daily exam and conversation with Thomas right there in the hallway, Thomas rearin' to get going on that trike, and then he was off, leaving them in his dust! I bet that scene made the surgeons' day.
We went for a morning constitutional around the hospital, including spending some meditative time quietly watching the rain.
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| Not the same as Black Panthers |
We also received from a new friend a Wearable Sloth Blanket--yes, this exists!--which gave us great delight.
The Child Life Therapist set up a scavenger hunt for Thomas using little plastic animals: so incredibly simple but perhaps the highlight of Thomas's day. Thomas couldn't believe he even got to keep the animals (he doesn't seem to have figured out after three months here that he gets to keep every single toy). He arranged the animals into an army and played with them for a couple of hours: the orange animals were the good guys. The "Cheeto" was on the bad team and, no, I was not about to correct his language and miss out on hearing that cuteness.
We also spent a good time in the Play Room where Thomas wanted to make St. Valentine's Day cards for his siblings.
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| Brother John got an exclusive card! |
Thomas Makes a Person Believe in God
In this hospital are roving nurses on the IV Team who come by daily to visually check each patient's central lines. Today our IV Team nurse who stopped by is one who has not seen Thomas since he was very sick in PICU.
She was shocked at how far he has come, just amazed. She said, "Seeing Thomas makes me believe in God."
Not Sick Anymore
Today Thomas mentioned to me, "When I am not sick anymore, I want to go visit the C---- family." (And his little friend J--- C.! He misses his little pal whom he hasn't seen in probably 10 months and he even sometimes asks nurses, "Do you know my friend J----?" which is the most poignant thing.) Anyway, his words just hit me and I paused.
"Thomas, you know what? You aren't sick anymore. You do not have any more cancer in your body. And you are not still having any surgeries. Your body is getting stronger, that's all. You are not sick. You just need to get strong!"
The staff has said from the beginning that everything would be two steps forward, one step back, and that has proven true. Everything is now exponentially getting calmer and calmer. Looking backward, I can now see just how strongly Thomas had serious ICU delirium resulting in no sleep-wake cycle, just like a newborn. His routine is getting so solid, just like a regular 5-year-old: He wakes around 6:00, eats three meals at normal times, is hungry for morning and afternoon snack times, has a regular Quiet Time 1:00-3:00 (with or without nap), goes potty at routine times (and no longer wakes up four times per night to go potty, either!), and tells me he's tired and ready for bed between 7:00 and 8:00 p.m. Thomas recently experienced his first two nights with only one night waking each and then the subsequent night (last night), he slept all night long for the first time here.
I still think of Thomas receiving medications on schedule hourly around the clock. Instead, now he receives meds only a few times per day, with swaths of three and four hours in between when nurses don't even need to see us. "Sure, go take a walk, go wherever, just be back in about three hours."
I've realized just today that I can now do everything the nurses are doing: I can do all of Thomas's body care. I can mix his J tube feeds and run the pump. I can change his surgical bandage. I can follow instructions and I can give him all his medications via the J tube. I can take his blood pressure, temperature, and pulse ox. I can track all of his food and calculate his calories and macronutrients.
Thomas is not sick. He is just recovering.
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