Katie and Mike with their son, Will, a childhood cancer survivor
After your child has had cancer, thinking about the bigger picture is hard. It puts you in a different state of mind. I have to keep myself from going down scary paths.
But then I look at my son, Will, doing typical, 3-year-old things. He is just a happy, smiling guy, excited to explore the world. He wants to go to the library, the park … he loves new things.
I know Will is going to make his own path—we will make our own path.
It has taken time for me to feel this way, which is probably not unexpected when your child has survived stage IV cancer diagnosed at 4 1/2 months.
The cancer came out of nowhere. We had taken Will to the doctor for a low-grade fever. His breathing was labored, so a chest x-ray was ordered. We expected a diagnosis of pneumonia. Instead, it was neuroblastoma, a deadly form of childhood cancer.
Will had a tumor in his chest the size of an adult’s fist. It was compressing his right lung, making it difficult for him to breathe. There were also calcifications on his spine, pressing on his spinal cord.
My husband, Mike, and I were told that our baby may never be able to walk.
Infants Can’t Tell You They’re Hurting
But the immediate focus was on keeping Will alive. He went into respiratory failure a couple of times, and ended up with a tracheostomy. Chemotherapy started immediately.
I can only hope that medicines kept his pain under control, as infants can’t tell you they’re hurting.
Will’s first hospitalization lasted 91 days, and I slept beside him nearly every night. While I was with Will, my husband tried to keep a normal routine at home for our daughter, Charlotte.
‘Get Going on CaringBridge’
It was in the first couple days—maybe even the same day of Will’s diagnosis—that a colleague reached out. He said, “I strongly recommend you get going on CaringBridge. It helped me, and I think it will help you.”
My friend’s young son had been diagnosed in 2013 with a cancer called rhabdomyosarcoma. Thankfully, he is doing great today.
I set up a website for Will, posted journal entries, and looked to see all the people who were visiting. I did it all from my phone, as I was often at the hospital 24 hours a day and did not have a computer with me.
Everyone Wanted to Know the Latest
At first, I viewed CaringBridge as a way to relieve some stress. The text messages and phone calls were overwhelming. Everyone wanted to know the latest. I found that details of status updates were being lost in translation.
So at night, I would take a deep breath and pour everything into a journal entry. But if Will was having surgery, or it was more of an urgent thing, I would do more posting.
I could see on the website the number of people who were visiting. I knew they were waiting for updates.
‘No Evidence of Disease’
By the time Will’s active treatment ended, he had spent more than 120 days in the hospital—nearly half of his young life. We were finally together as a family again. There is a 3 1/2 year difference between Will and his sister. It is hard to know what she remembers of Will’s illness. I am glad she does not remember Mom being away so much.
Will remains cancer-free. Or as they say in medical-speak, “No Evidence of Disease.”
The golden question is whether he will walk one day.
We are fully focused on physical therapy now. Sometimes, I see movement in his lower body, and I wonder, “Is that him doing it? Or is it just a reflex?” It is hard to tell.
The Story of Will’s Life
We continue to use CaringBridge, and post when we hit big milestones or when Will has scans. Recently, when we got his toddler-size wheelchair, I posted a picture so everyone could see his huge smile. He finally has his independence.
I look at CaringBridge as the story of Will’s life. One day, I will be able to show him the Journal I wrote on his behalf, and the thousands of comments from family and friends. I want my son to know how much he is loved.
Here When You Need It
Are you or a loved one caring for someone on a health journey? If so, start a CaringBridge website, where you can share updates and receive encouragement and support from your community.
Katie is a CaringBridge Mom. She said that just as a friend directed her toward CaringBridge after her son’s cancer diagnosis, she “pays it forward” by encouraging families to make CaringBridge a first place to turn.