By Sara Baker, Camp Mom —
September is Childhood Cancer Awareness month and this year we invited a few of our CRG families onto our social media profiles to share their stories, the realities of pediatric cancer and how Camp Rainbow Gold has made a difference. Their posts are shared here, edited only for clarity.
We are the Baker family–Jeremy, Sara, Desmond, Regan and our little schnoodle (schnauzer-poodle) Reina! Jeremy and I met in college at the University of Idaho and have literally grown up together, transitioning from our fun, carefree student days to getting married and buying our first home together in 2006 and becoming parents a few years after that.
We love to spend time together exploring different hobbies and interests; I bake and garden and do needlework with the kids, Jeremy likes to take them camping and play Dungeons & Dragons, and Desmond and Regan have been known to throw together magic shows and acrobatic performances. Both of our children love to read, and we can’t wait for the library to open up again! As a family, we designate Sunday night as “Family Night Movie Night” and take turns picking a movie to watch and a treat to enjoy, to get each week started off on the right foot.
We also love to travel–some of our favorite trips have been visiting Legoland (thank you, Make-A-Wish!), traveling through Oregon and down into the California Redwoods for a week, and staying at the Shore Lodge in McCall, where we got to reserve the theater to watch a movie of our choosing AND order room service. During Labor Day weekend this year we took our first camping trip up to Bull Trout and the Stanley area with some of our best family friends–the company and scenery were wonderful, and it was great to get out of town for a few days!
Our Cancer Story
Our childhood cancer story begins in 2014, when Desmond was 4 and Regan was 2. Near the end of 2013, we noticed a bump underneath Regan’s skin near her right ear that seemed to be increasing in size. We took her to her pediatrician who determined she had a blocked lymph node. We’d stay overnight in the hospital, but it was nothing we needed to worry about! While we were at that pediatrician visit, we also asked the doctor about a small bump underneath Desmond’s right eye. He advised it was a sty, and because it hadn’t changed in size, to leave it alone.
The overnight hospital stay for Regan was tiring. It was the first time we had a child undergo surgery and seeing your child under anesthesia can be a bit scary. However, all went according to plan and she was moved to a room on the fourth floor at St. Luke’s Children’s Hospital to spend the night. When I went up to her room, my heart sunk at realizing they had given us a room in the children’s oncology wing. All the non-oncology rooms were full. The wing was decorated for Christmas. I remember thinking we were so lucky to only be there one night and feeling so sorry for the families dealing with a real, medically ill child.
In the weeks leading up to Christmas, we started to notice the bump on Desmond’s eye changing size. It wasn’t very pronounced at first. In photos from Christmas 2013 you can hardly see anything under his eye. By January it was noticeably increasing in size. In fact, it was growing so quickly that one weekend Jeremy and I dropped the kids off with their grandparents on Friday night and when we picked them up on Sunday morning we could clearly see it had grown tremendously. We booked an appointment with our pediatrician. The pediatrician was concerned enough to send us to a specialist, who sent us to another, who sent us to another…Jeremy kept asking, “Is this cancer?”, to which they always answered “No.” Until they finally told us it could be, and our hearts sank.
Desmond was diagnosed with Orbital Rhabdomyosarcoma in February 2014. Our lives became a blur of medical jargon, doctor’s appointments, and survival mode. Rhabdomyosarcoma (which I horribly misspelled the first time I heard it as I was frantically writing down notes) is a type of cancer that forms in soft tissue. We were lucky because Desmond’s was in his eye and was caught very early. Other children we know have not been so lucky—when it forms in hollow organs such as the bladder, or the nasal cavity, children often are not diagnosed until their cancer is much more progressed. It’s worth noting that rhabdo is allegedly a ‘rare’ cancer, but we know multiple children who have been diagnosed with it in the Treasure Valley alone.
Desmond was just learning about superheroes when he was diagnosed and went to every appointment and treatment wearing a superhero cape and usually a mask. His nurses and doctors learned to dodge imaginary freeze guns and asked for the “secret password” whenever they needed to know his birth date.
Desmond underwent 5.5 months of chemotherapy, 4 overnight hospital stays, and 25 rounds of radiation (which all required general anesthesia). He had to stay home from daycare. He was poked and prodded when he did not want to be touched. He was forced to undergo multiple surgeries and still dreads the smell of rubbing alcohol and Jolly Ranchers because they remind him of getting his port accessed, which happened at least once a week, sometimes more.
In July 2014, thankfully, Desmond was declared to show “No Evidence of the Disease” and has remained that way for the last 6 years. He graduated from quarterly MRIs and blood draws to monitor for any return of cancer in the first few years. He now only has his blood drawn annually to watch for side effects from chemotherapy and radiation and to monitor for secondary cancers, which may be the result of treatment for the initial rhabdo.
As I was writing this story, a lot of emotions and memories that I had suppressed came flooding back to me, and it was a lot more emotional to revisit the beginnings of our cancer story than I expected. One thing I remember sobbing about in 2014 was the knowledge that we would never again be a “non-cancer” family. I knew even at that time that we could never go back to “normal.”
And it’s true – when I look at my Facebook feed today, it’s filled with people who have been affected by childhood cancer. I’ve virtually celebrated the end of treatment for kids I have never met in real life and probably never will meet. And I’ve had to take my 10-year-old to funerals for his friends, which is something no parent should ever have to do.
When childhood cancer touches your family, you are forever changed – for better and for worse.
Joining the CRG Family
Now that you know our family and our cancer story, I’m excited to have the opportunity to talk about our experiences with Camp Rainbow Gold. I very clearly remember another cancer mom telling me that CRG is the silver lining of childhood cancer, and I could not agree more!
It was well into 2015 before I summoned up the energy to look into what Camp Rainbow Gold was all about. I signed Desmond and I up for Family Camp – Jeremy wasn’t able to get time off work to attend with us, and I felt uncertain about my ability to take two small children camping! So we left Regan at home. Little did I know that “camping” with CRG is not really roughing it at all!
Upon our arrival at Camp Perkins in the mountains of Sawtooth National Forest, Desmond and I were greeted by more than one smiling face. Somebody took our names, and used a handheld radio to let other staff know that the Baker Family had arrived. At Family Camp, each family is assigned one counselor who hangs out with the family all weekend. Our counselor was Vicki, an experienced CRG volunteer. Vicki took us under her wing and made us feel right at home. She showed us to our rooms in the lodge, where we stashed our staff and I was relieved to see there were beds and running water. I decided I probably could have brought Regan with me after all, now that I knew another adult would be helping me out for the weekend – and also knowing that camp wasn’t located on the edge of a cliff!
We spent 3 amazing days participating in a variety of activities – Arts and crafts! A dance! A carnival! Swimming! Canoeing! – but there was also plenty of time to connect with other cancer families. For example, one evening some of the counselors took all of the children to watch a movie while all of the parents and caregivers gathered in a circle in the lodge, enjoying some specially catered beverages and snacks brought in from Ketchum. We shared our unique stories, speaking the shared language that only cancer families have. It meant a lot to me to be with other parents who had experienced the stress of childhood cancer.
In June 2016, our family participated in a second Family Camp experience – this time with my mother-in-law and both kids! In 2016 Desmond attended his first Youth Camp (for cancer kids ages 6 through 12), and has been a regular every summer since. In 2018 Regan eagerly hopped on the bus for Sibling Camp (for siblings ages 6 through 18), after longing to go with Des in 2016 and 2017. In retrospect, it seems kind of crazy that we sent our 6-year-olds off to a sleepover camp without batting an eye, but I really believe CRG is one of the safest and most loving places in the world. One great thing about CRG though, is that they’re not just a summer camp – they offer programming to support their families year-round. Through CRG we’ve been able to sit in a suite for a Steelheads Hockey game, take annual pictures with Santa, participate in virtual yoga and summer camp (#COVID), and dress up and present at a very fancy fundraising event for CRG in downtown Boise, among other activities. We are so thankful to be a Camp Rainbow Gold family, and are looking forward to making many more memories in the years to come!
Our Favorite CRG Memories
We have so many great memories of our experiences with Camp Rainbow Gold, but I’ve picked just a few to share with you. I’ll start with our survivor’s favorite memories.
Desmond says his favorite memories are going with me, his grandmother, and Regan to Family Camp in 2016. He also reminded me that Art Shack is his favorite activity to do while he is at camp, whether that’s Youth Camp or Family Camp. As I was searching for pictures, I was going through an old chat with Program Director Tracy Bryan. For context, Tracy was our assigned counselor for that 2016 Family Camp, so she and I have a longstanding, ongoing convo going through Facebook, and I usually check on my kids via Tracey once or twice a week while they are at their respective camps
In the old chat from when Desmond was at 2019 Youth Camp, Tracy shared with me that Desmond had taught some of the other kids how to make dream catchers with plates and string. She said “A whole bunch of kids came over and he was patiently teaching all of them. You would have been so proud.”
I have a few different favorite memories of my own, some of which involve me crying (now you’ve been warned).
In 2015, when it was just Desmond and I attending Family Camp, people helped us pack up our car and we headed for home. As we turned onto the dusty road leading us away from Camp Perkins and out toward the main highway, I was surprised to see the road lined with people forming a tunnel for us to drive through. They were waving and clapping and yelling for us, and I started to cry. These people, most of whom we had just met, were cheering for us and other families, to give us strength to keep going in our individual cancer journeys. That last act of support from all those CRG volunteers and staff meant a lot to me, and I had to pull over and take a break before I could see well enough to continue driving.
Another of my favorite memories was when our family was invited to attend a CRG fundraising event at the Boise Centre on the Grove, called Shine. Desmond and Regan were asked to come up on stage and participate in a portion of the fundraising, so we got all dressed up and enjoyed a night of entertainment and fun. There was dancing, and Cirque du’Soleil performances, and speeches read by other CRG alumni.
Desmond was totally in his element that night! He’s not the most outgoing kid, but everywhere we went somebody knew him. It was a whole night of “Hey, Desmond!” “Desmond, how’s it going?” “Desmond, buddy, good to see you!” He was such a social butterfly, and I love remembering that! I also saw him totally kick it up on the dance floor. For once, Regan was tired and ready to leave the party way before he did. Those of you who know our family know how unusual this is!
Time to SHINE
We shine for all of the people who supported us during our cancer journey – our families, our friends, our coworkers, and even people we have never met and probably never will. Experiencing a childhood cancer diagnosis was terrible, and heartbreaking, and I’d never, ever wish it on anybody. But the best thing to come out of it was learning how much our family was loved and the lengths to which people would go to help us through.
We shine for Camp Rainbow Gold, who continues to support our family even 6 years after Desmond’s initial diagnosis. Camp Rainbow Gold comprises the most amazing volunteers and staff and programming and opportunities and love and families. If you can support CRG in some way, through your time or resources, please, please do. You will get so much more out of it than you ever give in.
We shine for the cancer warriors we have lost – so many names I would never have known if not for this journey: Titus. Addie. Jorge. Maddie. JW. We remember you.
And lastly, I shine for my survivor, Desmond. The boy who made me a mama, and then the boy who made me a better mama, and keeps making me a better mama every day, in ways I never imagined.