Our Journey...

“What’s comin’ will come, an’ we’ll meet it when it does.”

–Rubeus Hagrid in Harry Potter and the Goblet of Fire

March 11, 2026

About three weeks ago, we marked the first anniversary of Rye’s brain cancer diagnosis. Many children with cancer mark that first anniversary while still in active treatment, so we’re incredibly lucky that Rye’s treatment feels–on most days–like something of a distant memory. Since returning home in early May, our life has been pretty much like it would have been before his cancer. 

Rye returned to fifth grade to close out his time at Malletts Bay School, then spent the summer hanging out with family and friends, boating, fishing, riding his bike, visiting the family “camps” (one on the southern part of Lake Champlain and one in the western Adirondacks), and generally living his best “Summer in Vermont” life. He had two notable summer highlights: Ta-Kum-Ta and Connie.

Camp Ta-Kum-Ta is Vermont’s sleep-away camp for children who have or have had cancer and their families. Rye had never done a sleep-away camp before, so he arrived with a bit of trepidation, but by the time we picked him up a week later he was a Ta-Kum-Ta kid through and through. Our gratitude to the organization and its legions of volunteers (and donors) will be eternal. (Ben and Aya each got to spend a weekend at TKT too, so they can vouch for it!) We all could go on for pages about TKT…

When Rye returned from TKT he found an early birthday present in the driveway: an old Meyers Laker 12-foot aluminum boat, just for him. It was love at first sight. He named her Constantia (Latin for perseverance, endurance), but he calls her “Connie” for short. With a little 3.5 horsepower motor on the back, he spent hours taking family and friends on rides in Outer Malletts Bay. 

The start of the school year meant a transition to Colchester Middle School, and new (but familiar) routines. Basketball, cats, saxophone, video games, art projects, the occasional trip to Montreal, and a recent fascination with TV shows about large-animal veterinarians.

For Aya, Kim, and Ben, the past several months have also gone on much as they did before Rye’s cancer, with some highs and some lows and lots of in-betweens. Let’s focus on the good stuff. Kim’s been increasingly active with the Malia Paddling and Racing Club, paddling and working out with the racing team and getting out for some extracurricular activities as well. Ben got away (far away) for a solo trip to the Souss-Massa region of Morocco in January (don’t get him started about it, but you could look at a few photos, if you’d like). And Aya has been cultivating a growing love of musical theatre with Burlington's amazing Very Merry Theatre (performing in Rent and Anything Goes, with more shows on the way)–check out this amazing solo where Aya reminds us all to “measure your life in love.” 

On February 16, Rye came home from jazz band practice and found a group of friends and family there to meet him. His Make-A-Wish Foundation wish had been granted! Rye’s wish was to have his very own pinball machines, and that’s what he got. Our family room is now home to two pinball machines and an arcade game console. It’s magnificent. Rye’s “wish granter,” Quinten, even worked with the lovely people from the local Pinball Co-Op (!) to find Rye his very own vintage Jokerz! machine–just like the one he (and everyone else) played in the loft at Christopher’s Haven during his treatment in Boston. “Let the game begin!”

You’ll notice in the photos that Rye’s new “arcade” also features a custom sign that reads “Ryed the Dragon!” Rye had a wonderful therapist during the first several months of his cancer journey, and she offered Rye (and the rest of the family) some wisdom early on that’s really stuck with us. She pointed out that it’s tempting to think of oneself as a knight in armor facing the threatening creatures in your path and fighting them, defeating them. But some threatening creatures (like the anxiety of cancer returning) are simply too big and strong to defeat–you have to learn to live with them, to find a way to make your peace with them. To move ahead, you must learn to ride the dragon.

Until next time, friends, please know that we Yousey-Hindeses are all riding our dragons as best we can. If there is anything we can do to support you or yours, please reach out.

May 1-18, 2025

(Apologies for the delay in posting an update!) On our last day in Boston we visited the cat café on Charles Street (finally!), then had dinner with an old friend and went to see Mean Girls (the musical). When we pulled into our driveway in Colchester on May 2, Rye found a banner signed by his friends and classmates, fresh-baked treats, flowers, balloons—and that was before he got through the door. Inside, he found his cats, and his bed, and all the comforts (large and small) that one hardly even thinks about until one’s forced to go without them. Christopher’s Haven was comfortable—special even—but it wasn’t home.

Now that Rye’s home, feeling well, and settled back into a more normal routine, we’re going to pause sharing regular updates here. He will have periodic MRIs at the UVM Medical Center to monitor his brain for any new signs of cancer, and this channel will probably be quiet unless there is something notable to report. If you would like to be made aware when we add more to this page, please share your email using the form at the bottom of this post.

Early on in our journey, a friend shared a Wendell Berry poem with us that we’ve found meaningful. The poem he shared was “The Real Work” from Berry’s 1983 book Standing by Words.

It may be that when we no longer know what to do
we have come to our real work,

and that when we no longer know which way to go
we have come to our real journey.

The mind that is not baffled is not employed.

The impeded stream is the one that sings.

The members of the Yousey-Hindes family have been supported by so many people as we’ve set to “our real work.” Family members and friends of all ages and locations. People that Ben and Kim work with (or used to work with). Parents of Rye’s and Aya’s friends. Friends of our families. Educators who have taught the kids, or even just shared school buildings with them. These individual and collective expressions of love have brought light in dark times.

We have also received extraordinary support from many different non-profit organizations. Without these organizations and the people who carry out their programs, pediatric cancer would be even more challenging to face. Here are some of the nonprofits that have played a role in our journey thus far.

• The UVM Health Network… Yes, it’s a nonprofit organization, and without it being the strong academic medical system that it is, the lives of the Yousey-Hindes family and over a million people in Vermont and Upstate New York would be much worse.

• Christopher’s Haven... It’s hard to overstate the positive force that Christopher’s Haven has been for us. It truly was a “haven.” The people there took us in, cooked us meals, embedded us in a community, and even introduced us to some of our favorite attractions in Boston. And all just a 6-minute walk from Rye’s proton therapy.

• The Project Pinball Charity... Pinball is powerful. This organization donates and maintains pinball machines in children’s hospitals, residences for children receiving medical care, and assisted living facilities around the country. Their mission is to “provide recreational relief,” and boy did the Jokerz! machine in the Christopher’s Haven loft deliver.

• The InVINCEable Foundation... An old friend of Ben’s connected us with this amazing organization and its powerful approach to helping families navigate the fear and uncertainty of a cancer journey. “We let the doctors use protocols and science to ‘fight’ the cancer while we focus on maintaining a positive mindset.”

• Mass General for Children Pediatric Radiation Oncology… The staff and the care were outstanding—it was like Rye was a member of the family. Rye’s child life specialist (Lizzie) even got us museum and cat café tickets, and partnered with Caring for a Cure MGH to get us tickets to the musical “Shucked.”

• NFI Vermont… For over forty years, NFI Vermont has provided a wide range of mental health treatment and support to children and families around the state. We are definitely indebted to them.

• Flashes of Hope... The black and white portrait at the top of this post was taken by a professional photographer in a private photo session designed to help Rye commemorate his cancer journey.

• Colchester School District… There aren’t enough words to express our gratitude to the educators and administrators of our beloved district. They have stood by every member of our family with unwavering commitment from day one.

April 19-30, 2025

Rye has completed his proton therapy treatments! He had 32 sessions in MGH’s Lunder Building Lower Level 3 surrounded by the finest people and most cutting-edge technology—all there to serve him and people like him. The emotions on the final day were surprisingly mixed and bittersweet, for all of us. After his last session, a group of nurses, radiation therapists, doctors, child life specialists, and fellow patients cheered as Rye “rang the bell” to mark the end of his treatment. Later in the day, we celebrated with our favorite group of volunteers at Christopher’s Haven by having waffles, playing games, and adding our hand-prints to the “tree wall.” 

If the past few months have taught us anything, it’s that you never truly know what lies ahead, so take each day as it comes and celebrate everything worth celebrating. Rye’s experience in Boston has continued to be a positive one over the last week-and-a-half. With a rotating cast of family, friends, and volunteers, he’s eaten good food (like pizza in the North End), explored cool places (like the MIT Museum), and had new experiences (like the duck boats!). He had professional photos taken in the MGH Healing Garden (more about that another time), got to see a musical in the Theater District, and took in the beauty of the Boston Public Library. Throughout it all, there have been highs and lows for each of us, and we’ve embraced (maybe too strong a word… side-hugged?) them as best we can. Thank you, once again, to everyone who is thinking of us and sending positive energy out into the universe for us. If all goes according to plan, we’ll be back in Colchester within a few days… but, we know now to hold every expectation loosely. 

April 14-18, 2025

We’ve wrapped up week five of Rye’s proton treatments—just 9 more sessions to go! Ben was with Rye in Boston this week, joined for the first half of it by Uncle Jeff (down from Burlington) and Cousin Lucy (over from Salt Lake City). They all enjoyed the chance to spend a lot of leisure time together, guided by Rye’s level of energy. He’s still certainly feeling well enough to be out exploring, but those times need to be balanced by time back at the apartment recharging. Their recharging time included healthy amounts of Mario Kart 8, pinball, and art projects.

The four of them took walks through parts of Beacon Hill, the Public Garden, and along the Charles River Esplanade. Rye and Lucy also took a field trip to the aquarium and Quincy Market. They all visited MGH’s Russell Museum of Medical History and Innovation and paid another visit to the Ether Dome. Rye even brought Jeff and Lucy into the treatment room with him to see the “couch” and his mask. (As always, the radiation therapists were welcoming and generous with their time.) While Rye got prepped for treatment, Ben, Jeff, and Lucy were invited to meet the physicist, electrical engineer, and computer scientist who monitor and operate the proton accelerator. They spent a lot of time that day reflecting on the thousands of physicians and scientists who have worked together to drive medical progress over the generations. A hundred years ago, Rye would have been treated with a saw and a spoon, now he’s being treated with a 200-ton proton accelerator. Uncle Jeff observed that a hundred years from now, the proton accelerator will be in a museum. Rye’s radiation oncologist agreed, though we’re sure that everyone in the room was thinking, “I hope.”

Later in the week, Ben and Rye balanced work and treatment with hanging out with the volunteers here at Christopher’s Haven and enjoying a beautiful afternoon at the Charlestown Navy Yard visiting the USS Constitution and exploring the grounds and museum.

April 5-13, 2025

Week four of “The Boston Era” was a very busy one—both in Boston and in Vermont. As was predicted by his radiation oncology team, Rye is losing his hair in the area where the proton treatment is targeted. He is understandably angry that it’s happening. In his words, “Before my hair started falling out, I didn’t look like I was sick. Seeing my hair come out shook me because now I look like a ‘sick kid.’” At least it’s giving him a great excuse to wear some of his favorite hats (like his dashing woolen fedora).

The week had several highlights for Rye and Kim in Boston. They had a lovely visit from Rye’s Grauntie Michèle (“grauntie” being the Yousey-Hindes family’s portmanteau for “great auntie”) and Cousin Emilie (who, turns out, shares many of Rye’s interests). They attended Rye’s first NBA basketball game, watching the Celtics trounce the Wizards thanks to tickets given by a close friend of Kim’s. Rye’s status as a Pinball Wizard was confirmed with his delivery of a historic score of 4.6 million after just the first ball on the beloved “Jokerz!” in the Christopher’s Haven Loft! And last, and probably most importantly, Rye got to spend much of Friday with a close friend from home, whose mother brought him to Boston for a visit. They played games, visited the Museum of Illusions, explored, and even went to Rye’s treatment together. Such a special thing.

Rye’s care team at Mass General really came through for him every step of the way this week, helping him feel supported and embraced. They cheered his pinball prowess, are helping find cool hats for him, purchased some local event and attraction tickets for us, and encouraged him to bring his friend to treatment to see the proton treatment room (and try out the massage chairs).

In Vermont, Aya shone as the Gryphon (in long overcoat and wings) and the Cheshire Cat (in glowing mask) in the Colchester High School production of Alice in Wonderland! Meanwhile, Ben and his team at work executed a three-day series of high-pressure events that they’d been planning since last fall. With that behind him, he’s relocated to Boston for the duration of Rye’s treatment. We’re all feeling the separation acutely, so we’re counting the days until we’re together for the April school break in just a few days.

Now that we’ve offered an update about the family, let’s talk about eggs. (It seems like absolutely everyone is talking about eggs these days, so we thought we’d better get on the bandwagon.) We’ve received many, many wonderful expressions of support, each with its own backstory. The cards from grandparents’ friends’ neighbors. The text messages and emails from colleagues we’ve not worked with for years. The gifts and notes and food and care packages from basically everyone—family, friends, classmates, neighbors, teachers, friends of friends, friends of family, and so on. More than once, we’ve had to get out a “tree of consanguinity” (according to Ben, these were important in the Middle Ages) to determine how exactly Rye and Aya are related to the people who’ve signed a card. It’s been amazing, and we are loathe to single out any particular demonstration of support for special attention, but... eggs.

Ben’s dental hygienist of several years, Karen, is from Peru and they really connected over Ben’s and his brother Jeff’s trip to Argentina back in 2022 (apparently, she doesn’t meet many Vermonters who travel to South America). Ben had an appointment with her a few weeks after Rye’s surgery, and while there shared the news about Rye’s cancer. Fast forward a few weeks, and Aya is climbing out of Karen’s chair, getting ready to head back to school. “Wait, I have something for you and your family!” Karen yells and runs off. She returns a moment later with a big box full of homemade Peruvian empanadas and two dozen rainbow eggs from her hens. Both were delicious.

March 29-April 4, 2025

We’ve wrapped up week three! A slightly longer update than usual today because we want to share both a bit about what we’ve all been up to and a bit about what we’ve learned about Rye’s cancer. Before we dive into that, please know that Rye has been feeling well this past week and really isn’t being slowed down much by the proton or medication treatments. He’s sleeping in more, but still has energy to spend on school, socializing, and exploration most days.

So, let’s start with the clinical stuff. After the UVM Medical Center neurosurgery team removed Rye’s brain tumor on February 18, the initial histology work-up showed that Rye’s cancer was a high-grade diffuse glioma. That diagnosis was based on what the tumor cells looked like under a microscope. Tissue from the tumor was sent for additional testing at Nationwide Children’s Hospital in Columbus, Ohio. UVMMC and Nationwide are both part of the Children’s Oncology Group, “the world’s largest organization devoted exclusively to childhood and adolescent cancer research.” Because of this additional testing, we now know more about Rye’s tumor on a molecular level. It’s not accurate to call it a glioma anymore. He has a neuroepithelial tumor with PLAGL1-EWSR1 gene fusion. We don’t know what the origin cell is and it does not fit into any category currently defined within the World Health Organization’s tumor classification system. 

We’ve always known Rye was a special guy, so it should come as no surprise that his tumor is also unique. There are less than 20 other cases of this type of tumor in the scientific literature. What that means is that there isn’t a standard treatment protocol, and there are currently no open clinical trials through which we could try an experimental form of therapy. Once Rye finishes proton radiation, he will return home. He’ll have MRI scans every couple months to look for any changes. And we will all practice living in the moment and staying hopeful.

All four Yousey-Hindeses were together in Boston last weekend and made the most of our two days together. Rye led a brief tour around Mass General so that Aya could see some of the spaces that he’s in every day. We also made a pilgrimage to the Ether Dome, the surgical amphitheater where, in 1846, Boston surgeons performed one of the first surgeries ever using anesthesia. We visited the Museum of Science (alongside approximately every family in the Boston metro area with a child under the age of 10); ate Lucky Charms, lovely pastries, and delicious Indian food; played pinball in the Christopher’s Haven Loft (of course!); did some shopping; hit the arcade; and enjoyed lunch and a “trad session” at an Irish pub in Cambridge called The Druid.

This week, Aya and Ben tended to the home front in Colchester. It’s a stressful and busy time with significant school, extracurricular, and work projects going on, but they are getting through it (thanks in part to daily doses of their preferred reality TV program). With an assist from Uncle Jeff (Hindes), they even managed to boil the last of the season’s sap. (Aya graciously took on the responsibility of cleaning out the pot.)

Kim and Rye were in Boston together (with a visit from Nana/Shari), and continued what is now the well-established routine of school, work, treatment, chores, social time, and exploration. Rye has always been a pretty shy kid, but lately has really enjoyed meeting and getting to know the volunteers that visit Christopher’s Haven. He’s also been playing a bit with a toddler named Jonny who is on his own cancer journey. There are so many great things about being at Christopher’s Haven, and the chance to learn from other families who are navigating similar circumstances is certainly one of them. This week we also learned what to do when the fire alarm goes off in the apartment building. Here’s hoping that doesn’t happen again!

Explorations this week included walks to the Public Garden and North Station, lunch in the Back Bay, a visit to the Museum of Illusions, and shopping near Quincy Market.

A school highlight has been Rye meeting remotely with his music teacher, who has been giving up a prep period every week to keep Rye connected to what they are doing in class. There will always be a special place in all our hearts for the educators and administrators of the Colchester School District. We could write a book about the depth of compassion that they have demonstrated to every member of our family: the emails and letters of support; the guidance and counsel; the comforting gifts; the above-and-beyond efforts to keep Rye connected to his peers; and the ever-present reassurance that they are here for us. Thank you to them, and to everyone else who is contributing to the overwhelming outpouring of love and support for Rye—and the entire family.

March 25-28, 2025

Ben and Rye have been in Boston together this week, and here are some highlights (with color commentary directly from Rye)...

Christopher’s Haven is awash in volunteers from the local universities, so we’ve been trying to spend some time getting to know them. We’ve played games and also just hung out. (“One night Dad made me socialize with the student volunteers from Boston University. They were trying to bake chocolate chip cookies and even though the cookie mix bag said ‘cookies in 3 easy steps,’ they messed it up.” ) Rye’s Uncle Jeff (Yousey) and his Nana (Shari) came into the city to visit him! (“It was great and I had some good time to talk and catch up with them!” ) Rye started a new medication that damages the DNA in brain cancer cells, which means that he’ll need weekly blood work. Luckily he not only connected deeply with Nurse Kristen about music, but she also took the time to talk him through the mechanics of the butterfly needles she uses. (“She was the most enthusiastic nurse I’ve ever met and overall an impeccable person.” ) Ben and Rye took an excursion to visit the surprisingly modest Larz Anderson Auto Museum in Brookline. (“Me and Dad went to the oldest car collection in America; it had some very cool cars, but over all it was underwhelming.” ) Another day they walked through the Downtown skyscrapers to the New England Aquarium. It was awesome. (“My favorite fish was the puffer fish because it looked so happy. One seal showed me its belly and swam 35 feet on its back.” ) Finally, they went out to dinner in the North End—with a special visit to Bova’s Bakery—to celebrate Ben’s birthday. (“It was great to have some one-on-one time with Dad. The restaurant was good, but the pastry place we went to afterwards was ten times better!” )

In Colchester, things have been pretty low-key. Lots of schooling and theater rehearsals (for Aya), work and sap boiling (for Kim), and an excursion into the woods near Colchester High to find one of Aya’s favorite relics (that’s a ’56 Buick Special, in case you’re wondering).

March 19-24, 2025

We are happy to report that Rye is feeling “great!” and is settling into a healthy routine in Boston. His days are a mixture of school work, treatment, and fun. Thanks to the kindness and energy of Rye’s teacher and guidance counselor, he is able to connect with classmates and friends via video call a few days a week for a mix of academic and social time. It’s wonderful to see. Meanwhile, Kim and Rye have figured out the fastest route to Mass General’s Gordon Browne Proton Therapy Center—it’s just a 6-minute walk once you exit the elevators in our apartment building. It’s a gift to be so close, considering that we need to visit 5 times a week. 

Rye and whichever parent happens to be present (Kim and Ben are taking turns) have also been exploring the city a bit—Cambridge, Beacon Hill, Back Bay—and finding noteworthy food and sites at every turn. He’s been introduced to the Museum of Science, found a good arcade and world-class hummus, is learning to navigate using the T, and is sleeping pretty well through the city noises that are so different from those back home in our neighborhood. Speaking of noises, he has noticed the driving culture is a little different in Boston compared to Vermont—a LOT more honking in the city. 

Speaking of Vermont, things are going pretty well in Colchester. Aya is keeping up with school and extra-curriculars and friends; the cats are doing a lot of sleeping (it’s amazing what can be accomplished with fewer distractions); wonderful cards and care packages continue to arrive; and Ben managed to boil another 32 ounces of syrup (it’s darker than the first batch).

Thanks to all for the ongoing support. Every member of the family is benefiting from a range of lovely human kindnesses these days. Being separated from each other is difficult—the 230 miles between us can feel like 230 lightyears. Despite all our modern technologies, the realities of life—schedules and responsibilities, to say nothing of how people feel at any given moment—can make it challenging to truly connect in the ways we all would like. Everyone is doing their best, and we’re all very much looking forward to being together in Boston for the weekend.

March 15-18, 2025

It’s been an eventful few days! First off, Rye continues to feel great, so that’s made everything easier and more fun. Honestly, at this point you would never believe that this kid has brain cancer, which is making things pretty damn surreal for everyone. We drove down to Boston on Saturday, and the four of us spent two days enjoying some family time. We visited Quincy Market, enjoyed a marvelous visit to the deCordova Sculpture Park, and explored the antique shops and historic sites of Concord. Aya headed back to Colchester with Kim's parents on Sunday, and on Monday the rest of us settled into an apartment across the street from Mass General (MGH). The apartment is owned by Christopher’s Haven, a wonderful nonprofit organization that serves pediatric cancer patients and their families. It’s a large and comfortable studio, with access to a lounge area stocked with books, games, video games, and a vintage pinball machine. 

Tuesday was the first day of Rye’s proton treatment. We started with a CT scan in radiation oncology so that they could double-check that Rye's mask is ready for the proton treatments. Not only did they verify that it’s all set, they had also painted it with symbols from The Legend of Zelda video game that Rye loves! So cool. We returned to MGH in the afternoon for Rye’s first proton treatment (after going out for ice cream). Rye says, “It wasn’t quite what I expected. I had to wear my mask and lie on a very uncomfortable ‘couch’ that was on a robotic arm that moved me all over the room.” According to the experts (which includes at least one UVM-trained radiation therapist), the treatment went well. Rye was happy to have the first one behind him and get back to the apartment for a bit of rest and relaxation. The only side effect so far is “waffle face” (a technical term) from the mask.

March 10-14, 2025

It’s certainly too early to count any chickens around here, but the sap is running which means that spring is approaching. We’ve been boiling the past few days and are hoping to get some maple syrup laid up before we all head for Boston in the morning. It feels like we’ve been going in all directions this week. School and work, theater rehearsals, school board meetings, medical appointments, and lots of logistics and planning and paperwork. But every day we’ve found our way back to the people and the activities we love. Kim and Aya went to the Flynn to see a musical. Rye and Ben hung out and watched more Top Gear. Kim and Ben took a moment to look at the lunar eclipse. The four of us went out to dinner at The Skinny Pancake. Friends and family came by the house to say “hello,” and to deliver treats and gifts (including a giant “gummy bear” nightlight!). We gathered around time and again to open letters, and cards, and packages from well-wishers near and far. And this afternoon, Rye’s class and teachers (current and former) threw him a party to send him off to Boston in popsicle-soaked style. Sap buckets, geometry homework, tears, wacky costumes, serious conversations, swearing, emails, cat vomit, starry skies, crepes, laundry, laughter, video games, hugs... Real life in all its dimensions, all at once, simultaneously overwhelming and indescribably precious. Thank you all for every gesture, every gift, every calorie, every word, every prayer and thought and moment you’ve spared for us. Next stop, Boston!

March 7-9, 2025

The reality of our situation sits with each of us differently minute to minute and day to day. Luckily, we have each other—and so many others—to lean on when that’s what we need. The past few days have had some hard moments, but also many truly joyful ones. Good days at school, watching Aya perform beautifully in the district-wide choir concert, fresh croissants (both chocolate and almond), oatmeal with our own maple syrup, visitors in the house, Lego sets, watching shows together. A neighbor-friend (who’s known Ben since they were in grad school together 20 years ago) stopped by to drop off a warm, scratch-made apple pie. Aya hit the climbing gym with her boyfriend. We realized that our “ruined” backyard makes the perfect environment for Rye’s prized radio-controlled truck. (We ended up with dirt in our hair, but it was worth it.) We tapped some of the maple trees in the front yard—it’ll probably be a short season for us, but we just couldn’t bring ourselves to skip this most rewarding hobby. Kim made a marvelous lemon and feta chicken dinner (which we all love and which reminds us of the family trip we took to Greece last spring). You get the idea.

In the margins, we’ve been working on the logistics around staying in Boston for Rye’s proton therapy. If you have recommendation for things to see, places to eat, etc., anywhere in the city (and especially near the West End) please pass them along. Rye and some constellation of Yousey-Hindeses will be in Boston from this coming weekend through the beginning of May!

March 5-6, 2025

Rye and Kim spent a long day down at Mass General on Wednesday preparing for Rye’s upcoming proton therapy. (Thanks for the ride into Boston Auntie Becky and Uncle Phil!) Rye started the day with a very unpleasant attempt to put an IV in his hands (they eventually gave up, to his relief, and just put it in what the Yousey-Hindes family has always called his “elbow pit”). He had to have the IV because at the last minute his physicians decided that he needed a contrast-enhanced MRI. After the MRI (which he handled like a boss thanks to be able to wear goggles that allowed him to watch a movie), Rye was brought to Radiation Oncology to have a special thermoplastic mask made. This mesh mask will help hold his head in the right location for delivery of the proton therapy. Rye and his mask then took a trip through the CT scanner to get detailed images of Rye’s head, which will help the care team plan his treatment and ensure that it’s going to be delivered accurately. After that, it was off to a consult with the Pediatric Oncology team. His physician talked them through Rye’s MRI scans from the past three weeks to help us understand what’s happening inside his head and what areas the proton therapy will be targeting. It was super helpful. Throughout all of this, Rye and Kim were kept company by physicians, child life specialists, social workers, nurses, MRI technicians, and others, all of whom were so kind and went out of their way to make them feel supported. They drove straight home after the last appointment and found Aya and Ben waiting with their favorite Folino’s pizzas for dinner—and piles of cards and letters (thank you!).

Thursday, Aya and Rye both went off to school as if nothing out-of-the-ordinary was going on. Rye rocked his favorite red hat and was surprised (and pleased) to find that his classmates and friends didn’t seem that interested in the whole thing. The fact that nobody treated it as a “big deal” meant that he could get down to the important business of enjoying school. Which he absolutely did. Aya, for her part, has gotten through these first days back at high school after a long, strange “winter break” just fine, but isn’t enjoying returning to the reality of homework. Kim and Ben can sympathize as they try to get a grip on their own professional obligations. Sap should be running tomorrow.... maybe we’ll tap our maple trees (sure beats catching up on work emails)!

February 28-March 4, 2025

In January, we received a lovely hand-made New Year’s card from our friend Avital. On it she'd written, “Each of us is a small light. Together we are a great light.” In one way or another, we've all been thinking about that sentiment a lot these past several days. There is, indeed, a very great light shining for Rye, Aya, and all of us right now. It’s humbling and so deeply appreciated. Even if we’ve not managed to reply to your text, email, or card, please know that we are grateful for it.

Life has looked and felt pretty normal these past few days, which has been wonderful. Rye had another friend over, we had more time with family, we went out to dinner at one of our favorite spots (Skinny Pancake), and we had plenty of time around the house playing games, building Lego sets, warming the cats, and watching movies. We also checked off the first two places on our Chittenden County Milkshake Tour (Ben & Jerry’s and Lake Champlain Chocolates). Neither one disappointed. Rye also created a self-portrait (complete with suture) on his new miniature Lite-Brite.

Outreach and coordination has started for Rye’s proton radiation therapy, which will happen at Mass General in Boston. Kim and Rye will spend a day down there this week meeting clinicians, getting more scans, and learning about his treatment plan. There is still a lot to figure out, but it feels good to have things starting to move forward. Luckily, he’s able to stay with his grandparents (Kim’s parents, Nana and Grampa Bob) this time around, and see other family too while he’s there. 

Rye’s neurosurgeon has confirmed that he’s recuperating really well from his surgery (“kids just bounce back from these things”), which means he should be able to return to his fifth-grade classroom on Thursday. Kim and Ben met with a wonderful team of teachers, counselors, nurses, and administrators from Rye’s school, and they have developed a thoughtful and thorough plan to share his news with his classmates and make him feel welcome and supported. We’re not sure who is more excited for him to return to the building, Rye or the staff.

February 26-27, 2025

Wednesday night after we'd updated this blog, we had a video call with Cousin Lucy out in Salt Lake City and played a hilarious game of Pictionary. (Uncle Jeff and Aunt Kristen are visiting her, so Jeff played too.) Thursday was another good day for the Yousey-Hindes family. Rye and Aya both spent long blocks of time with close friends here at the house, Kim and Ben worked (remotely) and had a long chat with a friend over cups of tea, and Kim and Aya got pedicures! In the evening, we explored some of the fan mail and care packages that have been arriving (!) and had some family time. Thank you to everyone who is helping us stockpile love and goodwill for the journey ahead.

In cancer news, we learned late Thursday that Rye's proton radiation therapy will be happening at Massachusetts General Hospital in Boston. We are very happy about this! Not only is Mass General one of the largest pediatric proton programs in the world (and part of what may be the world's largest medical research community), but it's also within 50 miles of the homes of Kim's parents, sister Becky and brother-in-law Phil, and one of her brothers (another Uncle Jeff). The five-day-a-week treatment is currently scheduled to start in mid-March and wrap up in early May. More details to come as we have them.

February 25-26, 2025

First off, we are so grateful for all the cards, texts, emails, and other expressions of encouragement that we have received. It feels amazing to know that Rye, Aya, and the rest of us have such a deep and wide well of support to draw from.

Have I mentioned the cats? Scylla (the orange one) and Charybdis (“Rybdi” for short, the grey one) are helping look after all of us here, as they’ve done since the days of the COVID lockdown. Scylla especially appreciates when Rye spends a little extra time in bed, warming up a spot for her. Rye’s strength and stamina are returning rapidly though, so she better enjoy it while she can.

Have I mentioned the leach field? Our town doesn’t have a municipal sewer system, so each property has to “handle” its own waste. In early January, our septic system/leach field failed, which means we’ve not been able to do laundry at home, we’ve had to take 30-second showers (or visit family nearby), and we’ve had to wash our dishes into a big bucket and dump it out behind the stick pile. Yes, it’s all as glamorous as it sounds, and, yes, it’s made our time home under these new circumstances a bit more complicated than anyone would like. However, as of this afternoon, we are thrilled to report that our system has been replaced and seems to be working perfectly! 

What else is going on? Well, Rye spent yesterday morning with a friend here at the house, which was wonderful. He’s got more friends lined up for the coming days. He’s also watching old Top Gear specials with Ben and walking on the treadmill. Aya’s been doing some intense, self-guided art therapy (which is paying off in lovely collages and other work) and tending to her many beautiful and happy houseplants (thanks for the ride to the plant store, Cousin Emma!). Some close friends stopped by this morning to visit us all—it felt amazing to laugh and carry on as usual. Besides our traditional meals together, the four of us have been watching movies in the evening. Our first screening was The Mitchells vs. the Machines, a beloved family favorite that felt a bit more emotionally intense this time. Highly recommended.

February 23-24, 2025

Rye is continuing to recuperate very well from his surgery. He’s been drinking lots of hot chocolate (!) and eating more energetically. Some family members stopped by to visit, and he enjoyed an afternoon hanging out with Aya’s boyfriend. He’s also been rediscovering his love for The Legend of Zelda and enjoying some Lego time. Most remarkably, he’s been taking some long walks around the neighborhood! 

Rye’s clinical team is working hard to determine the best program for his proton therapy, but we won’t know anything about that for at least a week. In the meantime, we continue to be filled with gratitude for everyone at the University of Vermont Medical Center who contributed to his care. From his neurosurgeon and oncologist, to the nurses and LNAs, the PICU physicians and anesthesiologists, the child life specialists, the MRI techs, the massage and music therapists (amazing!), the orderlies and custodial staff, and so many others who we aren’t even aware of.... Heck, even the guy working the parking garage booth waived Ben and Aya through for free late one night. Thank you to everyone!

February 16-22, 2025

Quick Summary: 

Rye was diagnosed with a brain tumor and is recovering well from emergency surgery. The tumor is an aggressive type of cancer that will require additional treatment out-of-state starting within the next month.

More Details:

Last Sunday night, Rye told us that he’d been experiencing double vision for a few days. We brought him to his pediatrician Monday morning and were referred to the University of Vermont Medical Center (UVMMC) pediatric ophthalmologist that afternoon. By 10:00pm, he’d had an MRI at UVMMC and been admitted to the pediatric intensive care unit (PICU). Rye’s older sibling Aya made sure that our cats were there with him.

Tuesday afternoon, Rye had a lengthy surgery to remove a large tumor from the left frontal lobe of his brain. Surgery went very well and Rye returned to the PICU to begin his recuperation. By Wednesday morning, he was already starting to feel like himself again, though he was very, very tired. Additional MRI scans on Wednesday and Thursday showed no evidence of remaining tumor. (Rye was an absolute rockstar in those MRIs!) He was transferred to the general pediatric floor on Wednesday evening, and continued his recovery. The staff and clinicians at UVMMC were amazing! 

Friday afternoon, Rye was discharged home, so Aya pushed his wheelchair down to the parking garage and helped settle him into his own bed. Since getting home, Rye has been gaining strength. He’s been eating a bit, walking around a bit, laughing a bit, sleeping a bit, and hanging out with family a lot. Oh, and he’s watching The Simpsons non-stop (at least that hasn’t changed). Perhaps most importantly, he’s been thinking a lot about this strange and scary new “rollercoaster” that he’s riding… that we’re all riding.

Before we left the hospital, we had a long talk with Rye’s neurosurgeon and Rye’s oncologist. The oncologist explained that preliminary pathology results show that Rye’s tumor is a high-grade diffuse glioma. [N.B. Please read the update dated March 29-April 4—Rye’s tumor is no longer classified as a glioma.] This type of cancer is fast-growing and aggressive. Even though the MRI scans were clear, it is possible that the surgery left some cancer cells behind. Even one of these cells is too many, which means that Rye will need additional treatment. That treatment will be proton radiation therapy. Proton therapy is a highly precise and targeted type of radiation therapy that can spare healthy tissues surrounding tumors, which is especially important when dealing with the brain. Unfortunately, proton therapy is only available at a few dozen sites around the country. Rye’s oncologist is working to develop a plan for him, and treatment will likely begin in three or four weeks. We don’t yet know where that treatment will take place; the closest center is in Boston, but there is no guarantee that is where he will go. We do know it will likely require two to four weeks of daily sessions. We do not yet know what additional therapy Rye may need after radiation. In a few weeks, we’ll have more details about Rye’s tumor when molecular test results are available. That will help us determine next steps. 

For the moment, Rye’s only job is to recover from his surgery and gain strength and resiliency–both physical and mental–so he is ready for the proton therapy. Aya, Kim, and Ben are also working hard to prepare themselves for what comes next. We’ve decided to celebrate every victory–no matter how small–and spend a lot of time reflecting on how grateful we are to have the support, resources, and determination that we do. Thank you for being part of our support network!

What you can do for us:

• We are blown away by the warm and generous offers of support that we have already received from all of you. Thank you.

• Please keep an eye on this document for updates. We’ll share information here regularly so that you can feel connected to Rye (and the rest of us) as we face “what’s comin’.”

• Trust that we’ll reach out–either here or directly to you–when we need help. We’ll let you know if there is something that you can do to support us.

• Please stay in touch. Consider sending physical mail, if you can, directly to Rye and Aya. (Rye describes this as “mail you can hug.”) Before you do anything, please take a few moments–if you’ve not done so in the past–to learn about how to communicate sensitively with people going through something like this. There are many resources easily discoverable online, but we’ve added a few links below that align with our thinking. For us, what’s most important is that everyone accepts that the emotions each of us are feeling at any time are the correct and healthy emotions–as uncomfortable as it can be, please try to meet us where we are.

• How to talk to a loved one about their cancer diagnosis (UChicago Medicine)

• How to support someone with cancer (Cancer Research UK)

• How to Be Supportive and Compassionate to Someone With a Serious Illness (Northwestern Medicine)

• Call your congressional delegation and ask them to help protect federal funding (and staffing) supporting medical research–it is the cornerstone for so, so many medical advances.