Father reflects on life after a childhood cancer diagnosis

In honor of Childhood Cancer Awareness Month, Josh Danoff, co-founder of Union Square Donuts, shares in his own words what it’s like to live through the cancer diagnosis of his daughter, Tilly, and how he’s paying it forward to the people who are keeping her alive. 

When you make the decision to have children, to bring life into the world, from the moment they take their first breath, they are in your care. And we are the soil our children grow in. We give them what we have. Sometimes everything. Sometimes more than everything. And then we replenish before we are able to give them more. We want to protect them, put them in bubble wrap. Do everything we can to keep them safe, but we also need to let them run, jump, and get scraped up. We need to let them live.  

At least once a week my wife, Clare, and I find ourselves saying, “it’s been a long week.” Part of that is just having kids, a family, work, but part of it is also all those things plus having a child with complex medical needs. Now, close to five years since we received Tilly’s cancer diagnosis, it’s been an extended series of long weeks. And there have been a lot of ups and down. A lot of high highs and some very low lows.  

When Tilly was just two and a half, she was diagnosed with a low-grade glioma in her spine. Three weeks later she was in a double-digit-hour-long surgery that tried unsuccessfully to remove the tumor. She suffered a paralyzed leg as a result and weeks of inpatient rehab. She then completed a 72-week regiment of chemotherapy and has since had countless hours of outpatient occupational therapy and physical therapy, aquatic therapy, horseback riding therapy, and so many visits to the chiropractor, the naturopath, and for craniosacral work. 

We turn to that which we hold dearest when faced with the unimaginable. We find comfort there, but with childhood cancer as the backdrop to everything, it can feel like we are always running. Running still. Running toward the future, away from the past. Or maybe it is the opposite? Running toward the past, to try and get back to before, or at least toward a skeleton of stable memories, a patchwork of times and places, feelings and colors, dreams and photos, and away from an uncertain future where the only predictable thing is every 12 weeks, for the next 20 years or so, Tilly will hear the whizz and burr, melodic starts and stops, drum and base, of the MRI machine checking the stability of her tumor. She’ll feel the chill of the room as she walks in, with me for now, in oversized scrubs. Her most recent MRI, her 20th, was in July, and the tumor is currently stable.

This tumor, which has taken up residence in Tilly’s spinal column and has entwined itself deeply within her tissue and cells and neurons, comes with such weight. The heaviness it holds in our lives far exceeds the actual weight that would have been displayed on a small scale in the operating room had the tumor allowed itself to be removed from the hold it has on her spine.

Childhood cancer arrives like Mike Tyson in his prime, like when he said, “Everyone has a plan until they get punched in the mouth.” When childhood cancer touches, it cuts. Cuts like the shrieks of old trains, how they break through quiet and calm like a splinter into skin. Cuts like when the line between right and wrong, the truth and anything but it, begins to grey, clouds over. Cuts like how words and emotions and love can betray. Childhood cancer can break you and almost definitely will at some point. How could it not? But it then becomes about how we get back up, how we find all the pieces and how we respond.

In a cruel twist, childhood cancer means having your body constantly figuring out a way to withstand more pain, endure more loss, carry more weight. Like always preparing for another change, another surprise, but dreading that the goal posts will shift yet again and that the something you’ll never be ready for, no matter what, will almost certainly come. But these are the bodies our lives have chosen.

“Hey, Dad,” Tilly announced as she walked into the kitchen the other day cradling Mango, one of her stuffed baby kittens. “I have some good news and some bad news.”  

Tilly is wearing a head-to-toe Super Kitty outfit, a mask over her eyes, and has a stethoscope around her neck. I’m sitting at the table with my feet up on a chair. It’s the weekend and the house is surprisingly empty, just me and Tilly. She tells me she’s a doctor, but also a Super Kitty and also a mom, and this is one of her babies—she has seven.

“I never really know how to answer that question,” I say. “Which news to start with, the good or the bad? I guess you can give me the bad news first.”

“The bad news is Mango’s heart is beating really, really slow,” Tilly tells me.

“Oh, that does sound bad,” I say. “What’s the good news?”  

“The good news is that she’s not going to die right now. She’s going to live for as long as she lives. Like me.”  

I just sat there floored and felt my breath. Felt the weight of my young daughter having contemplated her mortality. I remember feeling my breath go out once and hearing a sound. Or maybe the breath was in, like a tiny gasp. I’ve been thinking a lot about what Tilly said, how she said it, the matter-of-factness that she’s going to live for as long as she lives, the calm in her voice. The contentment. And she has helped me again, taught me something again, has helped me make sense of all of this, of all the days since the day she was diagnosed. She is the model for childhood cancer, for dealing with it, living with it, making it a part of herself that she could accept, not battle with, not allow it to be everything or to define her, and for being the toughest fighter who doesn’t actually fight, doesn’t ever think about fighting, just lives.  

I am not there yet. I am still stuck in the moment of her diagnosis, I think. I relive it over and over and over and then, with my arms raised up as far they can reach, I carry the moment around with me like a giant boulder over my head until I can’t hold it up anymore. It crashes to the ground and I relive the moment again, over and over and over. But now, just recently, for the first time, it feels like something is finally starting to loosen. The weight, still as heavy, has shifted, maybe a little lighter or maybe I just know how to hold it, carry it around like large stones that are too big, too oddly shaped for one person to carry.  

Tilly has neutralized the moment of diagnoses, so it’s not good or bad, it just is. She seems to have accepted that moment and has moved past it, moved on with her life, with living her life. “This is who I am,” I imagine hearing her repeat in my head. “This is who I am.”  

My daughter is here because of Dana-Farber and the Jimmy Fund. Because of all their tireless work. Because of the funds they have helped raise. She’s here because of Boston Children’s Hospital, because of the PMC, the Kids Ride, the Winter Cycle, the Radio Telethon, Giving Tuesday, and countless other campaigns and conversations and generosity. She is here because everyone involved cares deeply about making a difference, about changing the future.  

Tilly is here because of what has already happened, and she will continue to be here because of what will happen now—next.  

Through the generosity of my aunt and uncle, Linda Zarchin and David Oifer, we were able to start the Matilda Rose Danoff Fund for Pediatric Spinal Cord Tumor Research at Dana-Farber—Tilly’s Fund, for short. Pediatric cancer, and pediatric spinal cord tumor research specifically, is significantly underfunded. Although the survival rate for children diagnosed with low-grade gliomas is high, they are too frequently faced with lifelong side effects from the tumors and their treatments. More research is needed to develop desperately needed new therapies that will improve quality of life. The standard of care has greatly improved in the past ten years, and support through Tilly’s Fund and the Giving Page we created promises to revolutionize what is possible in the years to come.  

We have come together, the childhood cancer community, out of necessity, having pulled a similar lot, or at least a similar understanding of the situation, of the weight a child with complicated medical needs can have on a family, on the lives of everyone involved. How childhood cancer does not end when treatment is finished. How the impact of a cancer diagnosis fans out to include so many. We have grown together, this community of all the people that none of us had asked to become a community with. But then, in a blink, this community becomes so much more. Everything, in some cases. It becomes the place we find happiness, joy, validation, patience. It becomes the place where dreams and aspirations can feel real, attainable. And yet, it can also become the place of great sorrow, of loss and mourning, of dreams ended before the dreamer even had a chance to dream of something different, to be able to touch their dreams, wrap their arms around them like clouds. 

Childhood cancer can leave you raw like a bright cement-scraped knee, out there on display, bare for all your feelings and emotions and pain to be on view for anyone and everyone to see, because so often the pain is just too great to not find a way out. You can’t pretend it away, and since you can only hide so much for so long, the pain can’t stay concealed, can’t not wear itself on your face.  

It gives itself away sometimes in how your eyes hang. In how the muscles tighten and pull at the small of your back. How your chest caves in and sulks. How your fingers swell. How your eyes look damp with a thin layer of glaze, like maybe you’re about to cry or maybe you just got done.  

But we continue to fight, so our kids don’t have to.  

I was talking to Tilly the other day after someone called her brave again, a fighter again, and she didn’t really respond. “How does it make you feel when people say you’re brave?” I asked her.  

“I dunno,” she mumbled, shrugging her shoulders.  

“Do you think you always have to be brave? Do you ever think that you can’t cry?”  

“No,” she said, “you can still be brave and cry.”  

I know that while this experience with childhood cancer has undoubtedly been the most challenging of our lives, we also have so much to be grateful for. We have changed in so many unexpected ways, and in some strange way, may have actually been made whole. Made whole through loss. All worsts still have best parts.  

On the way to school a few years back, when Tilly was still in treatment, Josephine, Tilly’s older sister by four and a bit years, out of the blue said to me, “I wish everything was perfect.”  

“What if it is?” I replied. “What if all the things we each have going on is just what makes our family, our family?”  

I am grateful for the opportunity to share my family’s experience. I am grateful to be able to stand up in so much pain, under so much weight, and say, “thank you.” Thank you for what Dana-Farber and the Jimmy Fund has already done and thank you for everything they will continue to do.  

We have no idea what the future unknown consequences of Tilly’s tumor or her treatment might be, but we do understand that nothing is free. Treatment isn’t free, chemo isn’t free, all the pokes and sticks and prods. All the scrubs and IVs and wires and plugs and medical supplies. They all have a cost. All carry a weight.  

And this is why I wake up most mornings in the dark and why I don’t get back to sleep. Why I’m a different version of myself today than I was the day before we got Tilly’s diagnosis. Why there are so many things that I used to be able to do but no longer can. Why I feel this constant weight. Why I’m sometimes too scared to even be afraid. I try to put on a smile, wear a mask of composure and clamp down some of the pain. Try to laugh, or make others laugh. Otherwise, I might just be a few unexpected words away from crying. Crying because, every day, our community changes. It gets bigger and smaller. And each of those actions signifies a tragedy. Crying because I’m scared. Scared even though Tilly is doing great right now. Scared because I don’t know what is going to happen in the future, do not know what cost she is ultimately going to need to pay.  

But Tilly is doing great right now and at the end of the day that is all that matters. And even though she is doing great right now, her story is not done, the work cannot stop. In many ways, it has just begun. We do not know and cannot control or predict what the future will hold, but we can control our outlook, our actions, our positivity and the love we have not only for our family, but also for our larger family as well, made up of all the people the ripple effects of Tilly's diagnosis has touched, including the next generations of children with spinal cord tumors.  

When Tilly began treatment, we started bringing donuts to the Jimmy Fund Clinic every Wednesday. The team there started calling it “Donut Wednesday.” In fact, I was told some people even began requesting to switch days so they could work on Wednesdays. Donuts change moods, lives, and schedules. Every week, someone different would come up to us and say, “Oh, you are the donut family, right?” And we’d say yes and smile. They’d sometimes put an arm on my shoulder and say, “You know you don’t have to do this,” but as they said this, their grip would tighten a little, so while we didn’t have to bring donuts, we better not stop.  

I’m not trying to make donuts into something more than they are, but they do make everything better. They bring people together and get them talking about things they may not have otherwise. They are comfort, joy, smiles, and bring us to a place where our eyes can close for a moment and everything else just disappears.  

We had a standing order at the Union Square location in Somerville, Mass., and every week, as these donuts were being packed, the team knew they were going with us to the Jimmy Fund Clinic, and it brought them together in a way that other boxes of donuts did not. The team would also pack donut holes, and then a donut as Tilly went from 3 to 4 to 5 years old, as well as a few additional donuts in bags for Tilly’s friends or anyone Tilly wanted to give a donut to. I have spent many years honing my donut sense, and to watch this develop in Tilly in real time was amazing. She often sought out whoever was having a hard time and would just walk up to them or into the room where the tears were coming from and basically just put the donut bag in their face. No words, no explanation, just the non-verbal ways little kids often communicate and interact with each other.  

Now, when Tilly goes back for MRIs and to see the oncology team, she brings a dozen donuts and is able to carry the box herself. And while before, the donuts were “no strings attached,” she now barters for Tegaderm and alcohol swabs.  

And now it’s time for my family and my business to give back, pay some back for everything we have been given. In honor of Childhood Cancer Awareness Month, Union Square Donuts has a released a special Team Tilly donut, where 100% of the proceeds go to Tilly’s Fund to support pediatric spinal cord tumor research. And thanks to the generosity of the Oifer Family Trust, every dollar is being matched. While the fund has already made amazing achievements, this is just beginning. We’re just getting started! 

Join Josh and help support Dana-Farber Cancer Institute’s lifesaving mission to provide compassionate patient care and groundbreaking cancer research for children and adults. 

Since 1948, the generosity of millions of people has helped the Jimmy Fund save countless lives and reduce the burden of cancer for patients and families worldwide through community-based fundraising events and other programs that solely and directly benefit Dana-Farber. Learn more about how you can get involved at JimmyFund.org, and follow the Jimmy Fund on Facebook, X (formerly Twitter), and Instagram: @TheJimmyFund.