Our New Routine

Standing in front of a motion-activated display
at the new Arthur M. Blank Children's Hospital
in Atlanta, Phin interacts with a digital creature.

Hi Phin phans! Dustin here with a quick post at the end of October. I'll cut out the suspense about how Phin is doing: He's doing well! We really appreciate everyone who's reached out to ask about him, or everyone who's been checking back for updates. That means so much to us. Thank you. Sorry for the delay. Let's get into it! 

Medical Updates
Every two weeks on a Thursday, Phin and I make the trek to Atlanta. We hit the road after my class lets out, arrive around dinnertime, stay overnight in the Ronald McDonald House, wake up early and go to his clinic checkup on Friday, swing by the pharmacy to refill his meds, grab Indian takeout for the girls on our way out of town, and head back home. We're developing a routine. While it's a lot of driving and I feel kind of wiped out by the time we roll back onto our street, it's such a relief to see those labs come in and to know that, for now, his blood still looks normal, which means his donor's marrow must still be doing what it's supposed to do, which means he's still okay. 

At the lab at CHOA, Phin prepares
to have blood drawn for his labs

When we tell friends about our clinic visits at CHOA, they usually ask how long we'll have to do this, and honestly, we have no idea. As long as they tell us to? Okay. As long as we must. It's been suggested that the frequency of these trips, which almost always end up taking about five and a half hours one-way, will decrease if Phin's progress continues to improve, eventually dropping from twice per month to once per month for a while, then to once every two months, every four months, every six... But we haven't really allowed ourselves to think about that yet.

We only know that we are driving Phin to Atlanta whenever we are told he should go there, and that we will be doing it for the foreseeable future if everything goes well. It's all good, though, because the best part of these trips by far is when we drive back home and he's there, too.  

Phin On the Daily
It's both Halloween and Diwali tonight, and while Phin had to miss his uncles' annual Diwali party this year due to his extremely immunocompromised state (remember, he's not only still taking meds that suppress his immune system to allow his new bone marrow to thrive, but the bone marrow transplant itself hit the reset button on his body's hard drive of antibodies and erased all his vaccinations, so he's basically got the immune system of a newborn baby all over again...and even a brand new blood type!) he was able to do some cautious trick-or-treating. He dressed up as a sloth this year. 

Phin bobs for a donut at the
neighborhood Halloween party

Sloths are his favorite animal, but he lives kind of like a sloth these days, too. Some days he spends hours curled up motionless with his iPad while Neesha or I teach our online classes. He can't be outside in the sun too much (meds again), and he can't really go inside where there are other people (immune system again). So he's living his best sloth life at home, slothing it up while we either teach, grade, or ferry his sisters hither and yon. He's got to be bored and lonely, being seven years old and living this way, doing schoolwork with his new study pod a couple hours a week and with his tutor from hospital homebound for a couple more, but not really ever getting to run around and play with other kids. Time must absolutely crawl for him, slothy hour after slothy hour, one slothy day after another. He never complains. He's just happy to be home.   

Are sloths resilient? Relegated to just watching the world whoosh past, I bet they'd have to be. 

Phin sure is.