Varsity Painting owner Roland Thoms spoke with the Children’s Tumor Foundation about his family’s inspiring journey since his daughter Camille was diagnosed with NF2. The Varsity team of friends, employees, and customers worked together over the years to raise more than $650,000 toward research into treatments for NF. We are extremely grateful to the Thoms Family, including Roland’s father James Thoms, who is making a significant contribution to the Foundation this year.
Children’s Tumor Foundation: Can you tell us about your journey with NF and what led to Camille’s diagnosis?
Roland Thoms: Camille was born with a cataract in her left eye, and she had a small surgical procedure to remove a neurofibroma when she was almost two years old, but she wasn’t diagnosed until she turned seven. The circumstances of her diagnosis were unique – she was presenting with tongue spasms, her tongue would spasm uncontrollably.
We took her to the hospital, and they did a CAT scan and then an MRI, and they came in and said, “Mr. and Mrs. Thoms, your daughter has a brain tumor.” That absolutely floored us. They scheduled Camille for immediate surgery to remove a tumor that was about the size of a tangerine from her 7-year-old brain.
We tried to stay strong in front of her, but privately we were on our hands and knees in tears. But thankfully she had a very successful surgery; they removed the tumor and she came out with flying colors, and within seven days she was discharged from the hospital.
That was the good news – the successful surgery. But of course, the other news was that she had a diagnosis of neurofibromatosis type 2, NF2. So that began the journey, even though technically we had been dealing with some of the other issues prior to that time – the diagnosis was when it became real.
How is Camille doing now?
That was when she was 7, and today she’s 21 years old, so we’ve had 14 years of MRIs multiple times a year, and we’ve been monitoring the fibromas and tumors that are growing. We consider it a good year when we don’t do a surgery, but each year often brings a surgery. She’s had surgery twice on her left ear to remove the two neurofibromas that have rendered her deaf in that ear. She’s legally blind in her left eye because of the cataract. She has schwannomas up and down her spine, a large bladder tumor, a few surface lesions, a growth on her neck, and some smaller neurofibromas on her back and arm. So we keep an eye on all of those.
I’m proud to say that now she’s a thriving junior at the University of Utah, and loves life! She’s studying child therapy and wants to work with children who are going through medical challenges as they come to the hospital, and help guide them through that.
During her younger years, and through high school, we really tried to shield her from all the news. We did what we had to do, but we didn’t need to overburden her with too many of the details. But she’s transitioned in the last three or four years to an adult who can accept that this is who she is, and that NF does not need to define her. She faces her challenges bravely. And of course, like anybody would, she sometimes has those “Why me?” cries, but she bounces back and says, “All right, I gotta be strong, and just take one step forward at a time.”
Has your family’s perspective on life changed through this journey?
It has. You don’t research NF2 and find a lot of relief, you just get more concerned and worried about what the future holds. But you don’t have yesterday, and you don’t have tomorrow, all you’ve got is today to live! So we live life one day at a time and celebrate life. That’s become our family’s motto: Celebrate Life.
Because the alternative is not an option. There’s no value in wallowing in self pity, and Camille doesn’t need pity. She hates it when anybody offers pity, because she’s not looking for that – she’s looking to enjoy her life. We’re big fans of moving forward, and seeing what she can do, and facing each challenge as it comes.
How did you first learn of the Children’s Tumor Foundation, and how did you get involved?
The year after Camille had her surgery, so in October of 2005, we held a Halloween party at our house with the theme “Celebrate Life.” And it was a big success, so for the next few years we kept doing it, but we added a fundraising component and raised money for Children’s Hospital Oakland, where Camille had her surgery. Then in future years, we raised funds for Advocure, an NF2-specific charity, and my father Jim Thoms would match whatever we raised. We raised over $400,000 in those years.
In the past four years, I’ve become more involved in Children’s Tumor Foundation. I’ve had a long relationship with Tracy Galloway, who is a great NF warrior. I’ve also had the opportunity to meet and speak with the CTF President Annette Bakker on several occasions, and I’m very impressed with her resolve. So we’ve transitioned fundraising efforts to Children’s Tumor Foundation in the last several years. We’ve raised about $300,000 for CTF in the last few years.
Can you tell us a little bit more about the Halloween Bash?
My wife and I organize it every year – my wife is really the star here. Every year the Halloween Bash has a theme. (Read more about the 2019 event here.) We had a toga theme, an 80s theme, a 70s theme, a Rocky Horror theme, and so on. This past year it was a pajama theme, and we had a huge pillow fight! The feathers basically covered the entire bar. We always have two live bands, so it’s more of a party than it is a fundraising event, hence the ongoing theme, Celebrate Life.
For the past last three years, Camille has also been able to attend. We had to sneak her in for a couple of years, because it’s a “21 and over” bar. But it’s a party in her honor, so once she turned 19, we found a way for her to be there.
Your father, Jim Thoms, is very devoted to Camille and this organization. Can you tell me more about him and his recent gift to the Foundation?
My father approached me in early December, and said, “I’d like to make a sizable donation.” We did a bit of research to figure out how he could do it, because my father lives in Canada. With the help of the Bedouin Foundation, he was able to make a donation of $750,000 (Canadian dollars).
What I really want people to know is that, even though my wife and I hold the Halloween Bash, the real heroes in this story are my daughter, Camille Thoms, and my father, Jim Thoms. My father has donated over a million dollars toward NF research over the years, and he would give his life to help his granddaughter. And at the same time, Camille is a true warrior. She faces each day and challenge as it comes. Her balance is an issue, her eyesight and hearing are compromised, and yet she is so brave and strong. I would do anything I could to change things for her, but despite her challenges, she keeps on moving forward. She is just incredible.
