Phin in Fall

Hey there, Phin Phans! Dustin here with an update for October. Let's go!  

Milestones

This is a new section of our blog, added to acknowledge and remember some of the milestones, anniversaries, and other occasions in Phin's life. Although some of them will no doubt seem pretty trivial, there was a time not very long ago when we didn't even dare to imagine them. We couldn't pry our gaze away from the present and cast it into the future for even an instant, out of concern that we'd miss something, or out of fear for what we'd discover there. If you've ever been close to someone who's gone through a serious illness, you probably know what that feels like. Sometimes hope can be a heavy lift. When you get to see something happen that you were afraid to hope for in the first place, it feels like a gift.

It is a gift.

So here we go! It was a year ago this month that Phin returned to school. He'd gotten discharged from the children's hospital in August, but his immune system was so fried that he wasn't cleared to join his classmates in kindergarten for almost two more months. When he did rejoin them, he lasted just a few days before falling ill and returning home...again and again for a good portion of Kindergarten. He was susceptible to everything. At this juncture of the school year, he is the only one of our three kids who has NOT been absent due to illness.

Medical Updates

Phin went for his every-two-months clinic visit at the beginning of October. The results that came back looked great! Phin got the green light to move to every-four-months for clinic visits. The next time he’s scheduled to go to the clinic is February of 2024. 

As I sat down to write this update, I opened the app that has Phin’s medical history and called up his chart. I won’t violate his privacy by reproducing those images here, but imagine a column full of abbreviations like “WBC” and “RBC,” and words like “Platelets” beside a line with two yellow ends indicating low and high ranges and a green center that indicates normal range. The line for each entry has an arrow to show the patient’s (Phin’s) level when the sample was taken. While he was in treatment, these lines and arrows were how we planned our days. They would appear in his chart in the app first thing every morning, the results from a sample drawn through Phin’s CVC, often without his even noticing. Neesha and I would watch them each day the way we always watch the graphic on the weather chart whenever a hurricane is swirling offshore, as if to say, “It looks like we’re safe for now, but for how much longer?”

Every day, the report would come. Every day, it was like we got to peek into his bloodstream and see what kind of cells might be swimming around in there. We’d scan those bloodwork updates like Captain Ahab would scan the waves – endlessly, obsessively. 

Phin’s “graduation” to every-four-months clinic visits is great news. It suggests his oncology team is pleased with his progress and confident that they can monitor him a little less closely. Phin is definitely happy about not having to get stuck in the arm quite so often. We’re all extremely happy about it. 

I already miss those bloodwork updates, though. I always wonder. We spotted a bruise on Phin’s knee the other night when he was in the bathtub. He’d been jumping in a bouncy house and running around outside for hours getting knocked around by other kids at the neighborhood Halloween party earlier that day. That one bruise was all we found, and he didn’t have the paleness, lethargy, weird fevers, or loss of appetite. 

Just a little bruise on the knee, nothing more. 

Pretty sure that’s what we’ll be telling ourselves every day until February, 2024.

Phin On the Daily 

Phin and Aspen are teaming up again! 

They'll both be serving as honored heroes of the year for the Leukemia & Lymphoma Society's Visionary of the Year campaign. They got together this month to meet the candidates and inspire them as they prepare to raise funds to support the LLS and the vital work that it does. When Phin and Aspen met up for the first time in months at the LLS Launch Party, it was as if no time had passed at all between visits, like they'd wandered down the hall on a healthier day on the pediatric oncology unit of Memorial and began an impromptu game of hide-n-go-seek with one another in the hallway. Aspen's dad rightfully acknowledged that they will be lifelong friends. Their level of comfort and familiarity with one another will likely be unmatched by any other friendship they may have.

Phin visited two pumpkin patches this year (one with his family and one with his class) and is finishing up his musical theater class at the Savannah Children's Theater. Spoiler alert on the theater class: "There's just not enough running involved!" Which is to say, he enjoys the class, but he wishes he got to run around all crazy. So he's likely going to wait to make his triumphant return when he's 7 and can be cast as "an animal of some sort" in a production.

Maybe there'll be a Looney Tunes production that needs a Tasmanian Devil.... 

While we are celebrating and relishing in each healthy moment Phin lives, we--and Phin, especially--have not forgotten our friends who continue to battle every day. Right now, we are talking a lot about our friend Myles, who has been in treatment for a brain tumor for a year and a quarter. Myles is Phin's older sister Avonlie's age. He and Phin attended the same school last year and were diagnosed mere months apart with their separate cancer diagnoses. Over the summer, Myles's tumor stopped responding to treatment, and he is now heading off to St. Jude's, where he will remain for a month, to begin a new treatment plan. Please keep Myles and his family in your prayers. 

We need more research, more options, and more cures for our children. To help be an advocate for this important work, Neesha has volunteered to help plan CURE Childhood Cancer's Catie's Gathering event, which will be held in Feb. 2024. Each year, CURE hosts this fundraiser and funds raised from this event go directly toward research that helps children, like Myles, right here. Last year, in part because of the funds CURE raised, Myles was able to be properly diagnosed and treated for his cancer. Last year's event raised $255,000+ without seats selling to capacity. Imagine how much more we could raise and do with everyone's help!

Seth and Phin's Lady Gaga table at Catie's Gathering, 2023

Catie's Gathering is an event where a seat at a table is $100. Each table has a theme (decided by the host/hostess of that table). There are live and silent auctions, as well as sponsorship opportunities, and a VIP tent. If you would like to host a table, find a seat at a table, if you would like to donate an item or even offer sponsorship for this event, please reach out and let us know or sign up here.

The first time Neesha attended Catie's Gathering was four years before Phin's leukemia diagnosis. Four blissful years before we were met with some of the worst news about our son that we could have ever imagined. In 2018, we never conceived that one day our family would be the recipient of the important work CURE does (we have mentioned in previous posts how consistent they were in supporting us throughout Phin's treatment and after--bringing meals, companionship, toys, reprieve...).

If you or your company are looking for a meaningful, truly tangible way of making a charitable donation, please consider CURE where the money raised goes directly back into the community members who need it most: our children. 

Finally, let's wrap this post up with a couple of things from Halloween. Here's Phin in his school's character parade. 

Phin and his sisters came to where I teach and passed out candy to my students. I was wearing a hot dog costume. He drew this on the dry erase board before he left.