Bellamy, Standard Risk B Cell Acute lymphocytic leukemia Survivor
In the words of Bellamy's mom, Sarah Bailey
On March 7, 2023, I got the call that my child “probably has cancer.” We had been to the pediatrician the day before for my daughter Bellamy, 5 at the time, because she had very swollen lymph nodes on her neck. Her doctor recommended bloodwork, which we did that evening, and I honestly thought nothing of it. Her being my 4th kiddo, and very much a relaxed parent at that point, I figured she was just fighting something off. So when the call came in that next morning that she likely had leukemia and we needed to get to the Children’s Hospital in Aurora, I was stunned.
The beginning of our treatment story, not unlike most other families, is a total whirlwind. Big words, sleepless nights, endless beeping machines, worrying, and crying. Honestly, I wasn’t sure which way was up and which way was down. I didn’t yet have my bearings as we sat for almost two weeks inpatient in the hospital processing everything, and blindly taking whatever was fed to us, medicine and information. Luckily at some point I was coherent enough to remember the basics in life. So together, with Bellamy’s help, we wrote out a daily checklist of things we had to do and she drew a little picture next to each line. Brush teeth, check. Sunshine, check. Dance, check. Water, check. Laugh, check. It was a basic list, but sometimes, especially when things feel so out of control, we have to revert to the most basic of things that serve us and our bodies. The list empowered us, and when we requested that Bellamy (and her pole) go outside for a walk on a beautiful March day, they looked at us like we had three heads! That day, Bellamy and I walked our slowest mile, wheeling her pole around and taking tons of breaks, but it was also that day that we remembered our power to help ourselves and so our journey really began then on that sunny March day!
Eventually, we were discharged, and the transition back home was a nightmare. I had four kids needing me, all scared, a new cancer diagnosis, constant worry, and dealing with side effects from the medications. I felt like a first time mom bringing that tiny baby home, and so scared and lost and afraid of what to do, except that Bellamy was even more fragile than that newborn baby. So again, we remembered those basics. Bellamy and I started walking daily. She was so lethargic from the hospital, steroids and all the powerful medications they threw at her, but regardless, she started by walking to the mailbox. It was only about one tenth of a mile away, then I would pop her in the stroller, and it wasn’t ever perfect but it was something and it gave us purpose and goals to work towards.
Soon Bellamy got stronger, and we decided to start hiking locally. I was too scared to take her further than our own county, especially at first, but I knew we needed more nature than our mailbox walks offered. So I strapped on my very old Deuter hiking backpack, that had once carried my now 13 year old son, and we set out. At first, I would carry her most of the way, but Bellamy quickly began to do more and more distances on her own, and from that our 100-hike mission was born. Bellamy’s treatment plan for B Cell ALL is typically about 2.5 years long, and that seemed, and still seems so daunting, so long. But I knew if we made our milestones fun and healthy, it would be that much easier for us all. Some hikes I carry her, some hikes she is running ahead of me and I’m wishing she could carry me, but the point is that there is movement, there is sun, there is fresh air, and there is nature. Those basics have served us mentally, physically and emotionally throughout this horrible journey. There was a time, when the neuropathy from the medications, caused Bellamy to start to walk with a very strange gait and limp. I wasn’t about to let her suffer the side effects from her chemotherapy if I could help her, and although the hospital had PT available I knew there was a better way. So we packed up and headed to one of her favorite hikes in Red Feather, I gave her a hiking stick, and we VERY slowly trekked along. I’m not claiming that that hiking, nature, and diet, heals anyone, I’m just saying that it doesn’t hurt, and on that day, after that hike, she came home SO MUCH improved and we have not had any PT related issues since (knock on wood).
We are so grateful for nature and exercise and sharing that with you today, but childhood cancer is still very much an awful space. The funding is abysmal at only about 8% of the billions of dollars the federal government delegates towards cancers. 8%!! So with that it’s no surprise that the treatment options are outdated, and in most cases were intended for adults, just dosed for kids. Should my daughter and the 17,000 children diagnosed each year in this country, have to suffer from slew the potential long-term side effects? No way. These kids deserve treatment options younger than their grandma, with less side effects. It’s easy to be upset about all of these facts, especially when it is your child. The parents of children with cancer around the world feel so unheard. We keep yelling for help, for what seems like the worthiest of causes, but no one seems to care. So today is so important, because the LLS has chosen to give a powerful childhood cancer warrior a platform to share her journey of healing, so that we might inspire others, but also to raise awareness for this cause. They could have chosen anyone, but they chose a child, because they know how critical this cause is.
I’m proud to say that as of today, Bellamy has hiked over 50 hikes of her 100-hike mission. Bellamy continues to push me when I’m afraid of snakes in the summer, eats healthy foods, tells me when she needs rests, and reminds me to bring shorts, down jackets, and all the layers because it’s Colorado after all. Bellamy’s positive attitude, self advocacy, and our basics, have served us in ways that can’t be studied by big pharma. It has lifted our spirits and given us a greater purpose. We hope to inspire the world, especially childhood cancer families to enjoy nature and outdoor exercise in whatever way they can. Yet today isn’t just about my daughter and getting outdoors, we are merely the mouthpiece to say WE NEED MORE, and OUR KIDS DESERVE BETTER. We have been given an opportunity to raise awareness for countless families and we WILL. NOT. FAIL. So please join us today in supporting our tiniest and mightiest of warriors!
