The Phabulous Mr. Phin: Round Two

Aaaaand...we're back. Phin will complete his second full round of intensive chemotherapy at 4 a.m., which means, by the time many of you read this, he'll be done receiving chemo for this round and we will be watching his healthy numbers plummet until they hit bottom and start to climb again. The climb can take a while and this plummet period is where the greater fear factor resides; it's when he is most susceptible to infection, when his ability to fight any little thing that tests his system is most fragile. These are the scary times when fevers abound, transfusions are given, hair is lost, fatigue pulls him down and nights spent with Phin are even more restless because we don't want to miss a thing that might try to creep over him while he sleeps. 

Phin on the Daily 

Phin performs magic!

Despite the chemo, Phin has continued to terrorize the nursing staff with snake pranks and bouncy ball madness. He has come up with a game where you (or his nurse) stands at the closed door of his room and he fires bouncy balls at you (or the nurse) at high speeds and in multiple quantities. He doesn't tell you how many and, (even though they're tiny balls and he's a tiny guy so how hard could they really come?), it's terrifying to not know how many will emerge from his tiny fists and come bouncing at you at once. Nurses scream and cover their heads; I try to dodge and hope I've jumped the right way to miss being hit; Phin laughs hysterically and chases after the balls as they roll beneath his bed or a couch or Henry. It's kind of fun once you realize the balls don't actually hurt and (spoiler alert) he never has more than 2 at a time since he lost his neon green one. He also has regular playtime at the "boring" playground outside, a sanitary hour in the playroom and visits from magicians and musicians alike.

Phin has also changed his aspirations in life. Rest-assured, he still wants to be a zookeeper, but he's thinking that he may like to part-time as a nurse. He's been getting in some practice time, too, by learning how to take vitals, how to measure height and weight and how to flush his lines. If you haven't guessed already, the nursing staff has more patience than a roster of saints. They bring him gifts and visit just for a hug (he's a pretty snuggly little guy); they indulge his use of the hallway as a track for speedracing on his bike and requests to measure how tall his lemur "Tail-er" is ("Tail-er because he has a long tail", of course). They've nodded solemnly when he's told them his daily goal is to fill the urine-measuring-device that looks like a hat to the "very top"; they've advocated to let him off of Henry during the day so he can be wild and free, like the four-year-old boy that he is, even though they know this means he's coming for them with snake pranks and bouncy balls.

Phin flushes his lines

We are soaking up the energy before the inevitable downtime strikes.

Looking Ahead and Child Life 

Phin's birthday is coming up. It's June 1st. We don't yet know where he'll be--whether he'll be home between chemo rounds, still in the hospital awaiting his counts to recover or already back for his third round of intensive chemo--so we can't plan ahead for what we might do to celebrate him (once we know, I promise to share), but we do know Phin is blessed a million times over and doesn't need anything more than the prayers, good thoughts and love he (and his medical team are) being covered in by so many of you. (Please keep them all coming because it is my firmest belief they are what's lifting both him and us.) 

One thing we know for sure, though: Phin has quite a bit more time to put in here at the hospital while he faces down AML and works toward his triumphant return to home and school (which he so desperately misses). Lots of time in the hospital means lots of time in the Child Life Playroom--a magical little place where children from all walks of the Children's Hospital come to play and draw with washable markers on the windows. For now, he and his AML-fighting friend (a little girl I've mentioned, in person, to many of you who is a round of chemo ahead of Phin fighting the same dastardly AML he is) get an hour of sanitized time in the playroom--where Child Life staff members meticulously wipe down all the toys and surfaces, and block off an hour of scheduled playtime a day for each of them in order to limit their contact with children who may have something contagious we're trying to protect them from. This means the Child Life staff spends countless timing wiping down the entire room two separate times a day before our AML-fighters come for their scheduled playtime.

They are another breed of saint in the hospital ecosystem. 

Phin and "Batman with a Monkey Head"

The playroom is accessible to everyone and Child Life's reach extends well-beyond its walls. They bring crafts and toys to patients in their rooms, run interference when bandages need to be changed and children need to be distracted, help keep up with Beads of Courage, block off "safe, sanitized" time in the playroom for immuno-compromised patients, wipe and clean everything, bring holiday decorations or tape to pin up cards, bring resources for Phin and his sisters to help them cope with these great changes and big feelings in their lives, or meet any number of random requests a four-year-old may have; they make life in the hospital more livable. Child Life doesn't ask for anything in return, but in honor of Phin's birthday, we thought we might be able to help bolster their supply of crafts and toys by sharing their Wish List. We hoped to help give something in return that will benefit Phin, his AML-friend and all the patients in the children's hospital long after we get our AML warriors healed and home. If you'd like to join us in sharing this list or purchasing an item off of it, I can promise you at least one little boy already spent an hour playing with a "new" train another patient donated before his discharge. Every new item that shows up is deeply loved, especially, by patients like Phin who spend long bouts of time in the hospital for inpatient treatment and spend countless hours playing in it.

What to Pray and Hope For

Of course, we want to pray and hope for total remission and a permanent cure for Phin, but the most immediate needs for him to take steps toward  getting there are the following:

No infection or illness

Phin's medical team

Steady and strong count recovery so he can come home and then get to the next round of his chemotherapy

Continued good spirits and energy

As Always...

Please know we are bolstered by each of you--your kind, generous words and deeds are carrying us through this dark time. We could never have fathomed, and are so deeply humbled by, the love and support we're receiving every day; "thank you" is just not nearly enough.

Love--N

Phin's "one last thing to do" before being
readmitted to the hospital last Tuesday.