What does the journey of childhood cancer look like?
It’s challenging, both physically and emotionally. Believe it or not, most families describe some positives that appear through the pain as well.
William received his cancer diagnosis just days after his 5th birthday in 2016. In honor of Childhood Cancer Awareness Month, his mom explains what the experience has been like – from pre-diagnosis to recently graduating to the survivorship clinic.
What was William’s diagnosis and how did it come about?
William was diagnosed with medulloblastoma (brain tumor) on February 1, 2016.
The week before he was diagnosed, he began to have blinding headaches that were only relieved when he positioned himself with his head pointing down. We thought he was developing migraines or just had a horrible sinus infection.
We took William to his pediatrician, who then sent us to the hospital for a CT scan. I believe this was the first sign that God was walking side-by-side with us on our journey. His pediatrician can’t explain why he was prompted to send William for a CT scan and William’s doctors were always surprised that he did. Sometimes, it can take months before a pediatrician may consider a more intensive diagnostic procedure. His doctors were also surprised that the radiologist was able to detect the tumor on the CT scan.
What happened following diagnosis?
He was immediately admitted to the PICU. Within days of his diagnosis, he had surgery to remove the tumor from his brain. His surgeons attempted to regulate the pain he was still experiencing by draining the excess fluid, but after several days his pain continued. They decided to put in a shunt to relieve pressure, and that helped eliminate the pain. He also had a port implanted to allow easier access for chemotherapy.
What was your experience like as his mom?
I know families tend to say that the day their child was diagnosed with cancer was the worst day of their lives, but I don’t think people generally understand – unless you’ve experienced it – the terror and absolute loss of control that comes with a diagnosis. Something else that’s not mentioned as much is the mental and physical toll it takes on you. Trying to be your child’s advocate, understanding all the medical information, maintaining schedules for treatment/medicines/tube feedings, the sleepless nights in the hospital, time away from our other kids…in a word, it’s exhausting.
What was your family’s experience with the oncology team at CHoR?
I cannot describe how unbelievably human and empathetic the doctors, nurses and staff were. They connected with us in ways that helped us to build trust we so desperately needed. They honored our voice and ideas and this helped to give us some sense of control in a time when we were at the mercy of so many factors.
Although he was a child, William’s doctors and nurses treated him with respect and gave him a voice every step of the way as well. To this day, I believe that giving William a say throughout his treatment has resulted in him learning how to effectively advocate for himself. That was a gift that the hem/onc team gave to us and to William and I don’t even know if they realized it.
William’s recollection of his experience with treatment is actually quite positive because of all of the support and love we received from the team. He was king of the world during that time. What an unbelievable treasure to have your child recall such trauma with affection and happiness!
What did William’s treatment involve?
William had the opportunity to be part of the experimental group within a clinical trial through CHoR and Massey Cancer Center that we believe saved his life. Not every child is able to access clinical trials and not every hospital has those resources. He received weeks of daily radiation then monthly inpatient chemotherapy combined with outpatient chemotherapy treatments.
Where is your family in your journey now?
Our family just recently graduated to the survivorship program and it still feels surreal. It was actually quite difficult to say goodbye to the hem/onc team. I wanted so much to be able to convey how much they have meant to us and still don’t think I did it justice.
Since completing treatment, he has lost much of his hearing as a result of radiation and has been fitted with hearing aids. He has also received occupational, physical and speech therapies at the Bon Air Therapy Center and has made such great progress!
How would you describe William?
William is, thankfully, a typically annoying 9 year-old boy who is always ready with a joke, funny dance or sly look. He makes us laugh all the time and has dimples that will most assuredly get him out of some tight spots as he gets older. Telling jokes, especially Star Wars jokes, was one of the most amazing ways he connected with doctors and nurses throughout our journey. Doctors would intentionally find new jokes to tell William when he was coming in for treatment because they knew he’d be ready with one too.
What resources did you find most helpful to your family?
ASK and Connor’s Heroes have been among the most crucial supports for our family. They provided us with resources that always came at the exact right moment. Many times, when you’re going through treatment, you don’t know what you need and it’s difficult to articulate. ASK and Connor’s Heroes anticipated those needs and were always there to make sure they were met.
Also, the child life specialists who supported us, and continue to support us, are nothing short of angels. They hold a special place in our hearts.
Do you have any special ways of celebrating how far you’ve come?
Every October since he completed treatment, we have a family party and William picks where we celebrate. Without fail, he requests Mexican food. Funny enough, that was really the only type of food we could reliably get him to eat during treatment.
Our family has been so blessed by the treatment and services through CHoR that we have participated in Anthem LemonAid for the past several years and helped with Cookies for Kids Cancer fundraising opportunities. Our kids also recently held a yard sale to raise money for CHoR.
What advice would you give to other families facing a pediatric cancer diagnosis?
We learned so many lessons during our journey and are more than happy to share.
- Don’t ask questions unless you’re prepared to hear the answers.
- Trust your gut. You may not have a medical degree, but you know your child.
- Keep a log of everything that happens: treatments, procedures, medicines, doctor visits, etc. It’s hard to remember everything and you’ll reference this log many times.
- Be ok with asking for things to be explained multiple times and in different ways. It can be difficult sometimes to process even the simplest of conversations and to remember what you’ve been told.
- Accept help in whatever form it comes. You won’t know what you need during treatment or after treatment. When someone offers support, say yes and thank you.
- Know that this is the first step on a journey that will last for your child’s entire life.