Home Again

Home.

Phin outside a photography studio
after getting his school picture taken

I think we can all agree that “home” is not a place, but a state of being: comfort, ease, the knowledge that you belong, perhaps, surrounded by those you love most or, at the least, knowing they are safe, potentially, beneath the same roof as you when you lie your head down to sleep each night. The trauma of separation—especially the kind our children have recently endured—is challenging. 

When I drove off to Atlanta with Phin nearly four months ago, his sisters didn’t know when they’d see him again. If they’d see him again. In the months that followed, they didn’t ask when he would come home. They soldiered forward, shouldering the all-too-mature knowledge of how dangerous his treatment was going to be. They told themselves, “this is temporary.” Although we spoke to our girls every night and began to rotate each week so one parent was home with them while the other stayed with Phin in Atlanta, they spent approximately two months under the care of loving family with no physical contact with their parents. In the absence of their parents, our girls relied on one another for comfort, protection, and guidance. Some of you may remember how quickly after Phin was discharged from the hospital, we began to first isolate from crowds, then mobilize our girls to Atlanta to remain until summer’s end. All three together in one place. For our children, being together again--even just the simple act of working on different crafts in the same room without even talking--felt like home.

If you have a sibling, you know the bond is a unique and sacred one. They are the only people who have known you through every stage of life—the screaming, frantic baby who doesn’t want to stay in their crib, the sidekick who helps hide the evidence of the dropped roll of toilet paper into the toilet, the loyal fan at every sporting event or performance, the confidante who understands how deeply unfair your parents are being when they ask you to clean your room, the comfort sought when beloved lives pass on, the person who feels the same deep sense of fear when your only brother is scurried off to a faraway place leaving behind his empty room, abandoned toys, and you to wonder when—if—he’ll ever be back to play with them. Siblings are the only people who you can look to for verification of the life you’ve lived, the person you’ve been, the experiences you’ve had, evidence that there is a third sibling, even though they’re far away. One catchphrase or raised eyebrow of understanding across a room and you fall to stitches. One knowing look, and you are wrapped in warmth. Each morning when our girls come downstairs bleary-eyed and sleepy for breakfast, they sit beside one another, pull one another close with an arm around a shoulder, and rest their heads together. They are touchstones. Gifts. Home.

Only twice this summer did we have the luxury of feeling at home. Once was when the girls finished school and camps and joined us in Atlanta, the other was last Wednesday when we brought Phin home after spending 107 days in Atlanta.

As we pulled into our neighborhood at 9:45 p.m. after a long day of testing and procedures that began with an early morning wake-up and move out, we were greeted by neighbors waving from their porches, “Welcome Home” signs hanging from fences, and a huge crowd of Phin Phans outside of our house (family and friends included) awaiting his return with the most incredible surprise we could imagine. It. Was. Epic.

Medical Updates
The test results from the day Phin left for home began to trickle into the medical tracking app while we were still on the highway, and they were all good, regarding his chemistry and his counts. But the two results we were most anxious to see--the one about evidence of disease, and the one about chimerism--didn't arrive until just a couple days ago. 

Phin examines the site where his CVL used to be

Good news on the first one. No evidence of disease. No blasts. Everything looks really good.

So-so news on the second one. Chimerism in the myeloid line is 100% donor-originated, but in the T cell line, it's 90% donor-originated. That one needs to be 100%, too. What does it mean that it wasn't at 100% at a hundred days post-transplant? Does that mean it didn't work? That relapse is more likely? We've done a lot of Internet digging and asking other survivors and the team why it's not 100% yet. The team is telling us not to worry, that sometimes those cells take longer to come in and get to 100%. So, that's what we're going with. 

It's hard for us not to worry, though.   

And we're really happy about the rest of the results. 

Phin On the Daily
Each day Phin adjusts a little more to his environment at the house and in the neighborhood. It was Valentine's day when he last spent any meaningful amount of time here, and today, a week and a half after he returned, we started putting up Halloween decorations. He and I went on a walk a few mornings ago (this is Dustin writing now--hi Phin phans!), and he noticed all the things that had changed while he was gone--a stump in a neighbor's yard where a tree had been, the repairs that had been made to equipment at the playground, a row of saplings where before there was only grass. He had come home, but home wasn't the same as he left it. 

Phin reads to Sundae

"Everything's different," Phin said. 

I nodded. He was riding on my shoulders, noticing these changes. We set out on our walk side by side, but a hundred feet or so from our door Phin began to wilt, and it became clear what three months of staying mostly sedentary indoors had done to him. Yes, the place changed, but so did he. 

But he's venturing out more and more, gradually rediscovering his stamina and his strength, reintroducing himself to the places he knew before. A half a year is an eon in the memory of a child. It's like the continents of Phin's community have shifted in the time he's been away, right under the feet of the people who live there, creating a world that looks different to him now. He'll have to explore it all again, only now with new bone marrow, a new blood type, new fingernails and toenails, and the stubble of new hair.

And new stories and new scars. 

And a new chance.