The Gift

Twenty-one months. 

It has been 21 months since Phin's Italian donor selflessly offered her healthy bone marrow up to replace his vulnerable marrow. For 21 months, I have started every day rising before the rest of our home in the early morning darkness, placing my hand on our sleeping boy, his small body rising and falling beneath it, whispering a silent simultaneous prayer of gratitude and continued safety into the still morning air for Phin, for his donor, for my girls. In addition to my prayers, she has become a part of my daydreams...imagining her walking through piazzas, past Il Duomo, stopping for a cioccolato cornetto and espresso on her walk to work, just as I did as a young student in Italy 25 years ago. I can hear her voice in the Italian music I stream for my classes as they write. I imagine her dark-haired, wide-eyed, and joyful around a table full of family, surrounded by love. I dream for her of a long, healthy life, fulfilling and free of trauma, where she knows she is loved far and wide, but gets to feel that same love every day. I pray she has love for the days that are dark, the days that are hard, the days when it all feels so heavy. 

A few weeks ago, we learned that, contrary to what we'd initially believed--that two years following Phin's transplant, anonymity would be lifted if both parties (the donor and the donee) agreed--Italy is one of several countries who forbid the veil of anonymity to be lifted for the donor and the life they saved. We are forbidden to ever know this selfless human.

This news sat heavy for all of us. Dustin and I felt sorrow and disappointment. We'd been looking forward to welcoming her into our family. Av felt outraged. Obelia, too. Phin, in disbelief, said "You mean we won't get to meet her...EVER?" Av proclaimed defiantly, "Then we will write letters. She will know of us and the difference she has made."

Who knows, really, what her life is like? I only know I pray for her and think about her--a total stranger--every day. She occupies a very real place in my heart, in our family, her blood pumping through our son, fighting every illness or foreign cell it sees in ways his own could not. Every day past 18 months in remission is terrain we've never tread before and it's all because of her. 

Medical Updates

If you've been following the Phinstagram, you may have seen that Phin is being weaned off from his GVHD medication. When he initially began taking them, his doctor answered most of my questions by telling me "we just don't really know; each kid's GVHD behaves differently; there's no roadmap or protocol because this drug was only recently approved for pediatric use...at best, he'll regain his mobility in his joints; at the least, we can hope it will stop the progression." It was hard to imagine an active little boy like Phin might be stunted in his ability to play all the sports he wanted to play because GVHD had stopped him from being able to bend his wrists fully, spread his arms flat, bend his ankles in a running motion. But because we didn't know, we accepted that these were the challenges we knew might come and we were prepared to accept them happily, even, in exchange for having our son. We put Phin in taekwondo as a form of physical therapy, diligently watched him take the medication twice a day (and a myriad of new ones that accompanied it to serve as extra protection against all types of possible infections) and hoped that the progression would pause. And within a few months, something miraculous happened: it did. It not only stopped, but began improving month-by-month. His doctor took photos, cautiously said he thought the medication was working, but remained tight-lipped about the possibility of weaning...until this month.

Exactly two years from the date of Phin's relapse in 2024, his doctor recommended we begin the weaning process.

We can be blind to progress when we are too close to it, but when I pulled these photos to make side-by-side images, to celebrate Phin's progress, the success was undeniable.

The pictures above on the left side of each pair are from almost a year ago when Phin was first diagnosed, the ones on the right are this month as we begin weaning from the medication that paused his GVHD. The top picture to the right shows Phin's inability to unfurl his hands, bend his wrists and do a true push up a year ago. I remember watching him struggle in taekwondo class that day, the other kids counting ahead while it pained him to manage even one. Of course, I teared up, thinking of his struggles, all he'd overcome and all that was still left to tackle--what we knew and what we didn't know that might be waiting somewhere ahead. The photo of him in the tie-dye shirt was last week. Now he's one of the first students to twenty--deliberate, painless.

Yesterday, I shared a "Phin Medicine Reset" video on restocking his weekly medications into a pill keeper. 

Although he's weaned ever-so-slightly from the GVHD medication, the optics of that are really just removing one of two doses he takes a day. All the prophylactic (medication to build defenses against possible infections) medication is still in tact. Plus, we added some Zinc and a nutritional gummy supplement, both because of his poor eating habits. Before cancer, Phin was our best eater. If you asked his favorite food, he'd tell you "broccoli". avocados and tuna were close seconds. Since cancer, it can be a struggle to get him to eat consistently, with no clear obstruction: is it the taste? are you not hungry? does your stomach feel bad? do you think you're sick? The answer is always the same: a shrug as we try putting food after food in front of him until we find something he likes again. The Zinc is intended to help of its a tastebud issue; the supplement is to make up for the nutrients he's not getting due to the pickiness. On the topic of taste, his current favorite foods are mini ham and cheese sandwiches with mayo (I cut one sandwich into four pieces) and mini Chips Ahoy cookies.

In reality, he's taking at least 5 pills on the weekends and 4 throughout the week, twice a day. Every day. Often with steamed oatmilk and vanilla syrup, decaf coffee with caramel oatmilk creamer, or decaf blueberry tea with honey.

Phin also had the flu earlier this month. And he definitely got it from me. Have you ever had one of those moments where you can see something happening but it's just not within your human power to stop it? That's how the flu happened. A student of mine had been unwell. When she returned, she wore a mask and asked if she could speak to me on our break. I stood a solid four feet away in the hall as we spoke, but I had no mask to protect me when she stepped closer so as not to yell, then proceeded to cough right in my face, through her mask without covering her mouth. It was like I could feel the flu particles spraying like glitter in the air, and like glitter, I knew it was too late for me to wash it off. It would linger for weeks. Four days later, I had the flu. Phin and Obelia fell next.

But, Phin's pediatricians at Coastal Pediatrics are continuously outstanding. Despite testing negative for flu, they (with CHOA's blessing and encouragement and knowing I had flu and they had vaccinated him at his last appointment) prescribed him Tamiflu and the same day his fever popped is the last day we saw it. 

Phin on the Daily

We are still holding our breath through this season of Spring, tightened chests and cautious steps, but Phin is plugging along, smashing boards at taekwondo, belting up every few months, working on his footwork for soccer, and working out daily. Yes, really. Phin likes doing a weight-lifting session with some dumbbells almost every night right before going to bed.

Academically, he's doing well. Something that still surprises me when I say it. For a child who's never had a full year of formal educational instruction, I honestly don't know how he's doing as well as he does. This is not to say that he's adapted to the consistency of school like most children do by second grade. In fact, most days he asks "Do I really have to go? I can do that stuff at home. It's just such a long day." He's not wrong. It is a long day, especially for a kid who's barely had any long days at school, but most kids seem to get it by now: we go to school all day to learn, and then we come home. Phin does not. 

The new immune system his donor gifted him is strong. The fever he had with the flu is the only one we've seen so far this season (knock on wood). That's not to say he hasn't been sick. He's had colds, but his immune system fights each sickness well and Phin doesn't say that he feels bad. This is the tricky part. When our other children have been sick, they've told us: "I feel bad. My throat hurts. Can I stay home? Can you give me something for it?" Phin never learned this. The same year he started school was the year he was diagnosed with cancer. He didn't have time to realize how long and boring a full day of school could be, to actually want to use sickness as an escape. But Phin knows what it's like to feel really bad so instead of saying this, he simply states: "I'm sick." 

It's always true. I can hear congestion in his voice, see the redness above his lip where he rubs his runny nose, but sans fever or specific complaint, it's hard to know what's wrong, how sick he really might be, or where the infection might be located. "Does your throat hurt? Ears? Head? Belly?" He shrugs and just says: "I'm sick." 

It's hard to know what to do in these moments: send him to school? He has no fever. Keep him home? He doesn't seem in distress or discomfort. This was our exchange the morning we sent him to school before the onset of the flu. Later that same day, when we went to pick him up because he'd spiked a 102.7 fever,  we learned his teacher only discovered his fever because he went to her and said, "Mrs. C, can I take a nap?" This was the same in the hospital when he was beginning to come down with an infection. Had his temperature not been monitored regularly, his glossy eyes, sick breath, and sudden sleepiness were the only other clues we had, the only clues we still have. I sometimes think he says "I'm sick" because he realizes it's relative; I think--and hope--I guess, compared to what he's been through, nothing will ever feel that bad again.