Thankful

Hi Phin phans! Dustin here with a quick update on Phin.

This is the end of Thanksgiving week, and we have a lot to be thankful for this year: Our boy went into remission again, matched with a willing bone marrow donor, underwent transplant, survived the initial post-transplant period, and got to return home and cautiously, hopefully, tiptoe back toward resuming some of the activities he liked to do before he relapsed in February. He was--is--fortunate to have made it this far, and so are we. And even if he continues improving at the same rate and enjoys the same incredible good fortune he's already had, he'll still have a long and difficult road ahead. 

But this isn't the time to speculate about the perils to come, or to dwell on the unpleasant parts of the past year. It's a time to give thanks, and to say that we are very thankful that Phin is still here and that you all have chosen to walk this road with us.     

Medical Updates
At his most recent visit to Atlanta a week ago, Phin got five teeth extracted by the dental team that did the extractions he got over the summer. Then, he went to CHOA for his clinic checkup. 

Luckily, all of the teeth he got taken out were baby teeth. He also got two fillings and four caps. The reason for this frightful amount of dental work, as some of you who've had chemo before can probably attest, is that the human body, like the planet itself, is a series of connected systems. Toxins introduced into a river, for instance, can infiltrate the various biomes it nourishes and affect the organisms living there, and such is the case with chemotherapy, the bloodstream, and, in this case, the mouth. Upsetting the balance even a little bit with a shift in the pH of the saliva, or its amount, and the conditions that allow harmful microbes to thrive and helpful ones to perish could have disastrous consequences. That's what appears to have happened with Phin. But aside from a sore mouth and a few stitches, he came out of it with no complaints. 

At his clinic checkup, we were told that his counts look good and that things still appear to be going according to plan. Still, we've found that it can be difficult to get definite answers, particularly about what he's allowed to (safely) do and when he'll be able to do things like go back to school or gather with larger groups of family and friends. This makes it very frustrating to plan. But on the plus side, he came through a relapse and a bone marrow transplant this year, and we've arrived at a spot where resuming those things I mentioned are even conceivable. I remind myself of that anytime I feel frustrated. That we're even talking about it is a blessing.

Also, a couple days after Neesha and Phin returned from Atlanta last time, Phin started sleeping in later and telling us he wasn't hungry at mealtimes. Those were some of the first signs, both times Phin was sick. Sick sick, I mean. This happened around the same time his new chimerism results showed up. To refresh everyone's memories about chimerism, it's the percentage of cells in Phin that came from the marrow he received from his donor--two kinds, both ideally at 100% from the donor. Alarmingly (to us), one of those results which had been at 100% had fallen to 98%. We're told this is within the margin of error on the test, and that sometimes these percentages wobble a little as his donated cells try to annihilate the remnants of his old immune system in what's called Graft vs. Host Disease, or GVHD. But that lower chimerism result, coupled with the sleepiness and loss of appetite, was too much for us. So even though he'd just had his blood drawn for labs in Atlanta, back he went (to the clinic here, thankfully) for additional labs. And of course he was a trooper for that blood draw, too. 

And, thankfully, his counts were good. Again. 

"Probably just a bug," the physician said upon seeing the results. 

"Probably just a bug," we repeated. 

Phin On the Daily 
I'll mix it up for a change on this part and pass the mic to Neesha, who posted the following on the Phin Phans social media accounts a couple of days ago. It's about sharing Thanksgiving day with Aspen and her family. 

I know that many of you have been thinking about Aspen and holding her close in your hearts, and I would encourage you to continue to do that as she prepares for her bone marrow transplant. I can report that a matching bone marrow donor has been identified for her, and that Aspen's donor, like Phin's, is someone unknown to the family--a person willing to put themself on the bone marrow registry to save the life of a child they don't even know. So now, at the end of Thanksgiving week, to everyone out there who has joined the bone marrow registry just in the hope that maybe someday you'll be the one that matches up and gets to save a life, thank you. I type the words with tears in my eyes. Thank you so, so much.  

Okay. Here's Neesha:

Thankful.

There are so many things to be thankful for if you take the time to look. You have to choose that, though, instead of giving in to the dark or disappointing parts of life that tempt you toward despair, lurking around every corner. Choosing thankfulness in the darkest, most difficult seasons of life is so hard, but even then, they’re there.

Today on Thanksgiving, we couldn’t be with our blood relatives—the risks were just too high—and the Shaw family, who is prepping to head to Atlanta this weekend for Aspen’s transplant next month, couldn’t be with theirs either. I like to think this was no mistake, to believe there’s a God out there who gave us to each other two years ago, who, again, gave us this time to be together today, on the eve of their departure, because every day since we’ve known them, no matter how hard some of those days have been, it’s always been easy to know how lucky and grateful we are to have them, to have the friendship between Phin and Aspen.

They share such a special closeness with one another—a familiarity and comfort, having weathered storms side-by-side that none of us will ever comprehend. They run off hand-in-hand, sit beside one another, look out for one another, “thick as thieves”. An unexplainable bond. It is a salve to my heart to see these two together.

We love and will be thinking and praying daily for the Shaws—the family cancer has given us—as they move onto this next part of Aspen’s journey. It was an honor—and felt so fitting—to have them with us today, on a day when we talk and think openly about all we are so thankful for. Please keep them in your hearts and prayers as they forge onward to Atlanta, as well.

And, before this day is over, we want to say “thank you” to you, too. We are thankful every, single day for each one of you: the strength, love, compassion, support, and countless ways you show up for us. There will never be enough days or ways to express how thankful we are. Happy Thanksgiving, Pham.