With 9 years now passed since my baby daughter finished active treatment for stage IV neuroblastoma, I don’t think about cancer every day anymore. I am probably down to a few days a year. Maybe, eve...
With 9 years now passed since my baby daughter finished active treatment for stage IV neuroblastoma, I don’t think about cancer every day anymore. I am probably down to a few days a year. Maybe, eventually, it will become only once a year, for Kate’s long-term follow-up. Wouldn’t that be nice?
Badges of Honor
My girl is 10 now, a sweet redhead with big brown eyes. While scars on her body from surgeries, biopsies and a central line for chemo are “badges of honor”—marking her as a cancer survivor—Kate has no memories of what was an agonizing and traumatic experience for our whole family. We have scars, too.
In some small way, I am glad Kate was a baby and not able to remember any of her 8 months of treatment. She wasn’t able to talk yet, but she was fully conscious, and in a lot of pain. But she did not cry. She used to clasp her hands—like praying hands. It was her signal of pain. That was her state of being.
But just as Kate has healed physically over the years, I have healed emotionally. CaringBridge has played a big role in that. I did not start a website for Kate with the intention of healing. But that is what happened. It has been such a valuable life link.
Searching For Positive Cancer Stories
Early on, I was desperate to read anything about neuroblastoma that was not terrifying. I wanted to find a success story, but I kept seeing, “50 percent die.” (Note: Everyone tells you after a diagnosis not to search the Internet. But you do it anyway. And then you often wish you hadn’t.)
I became CaringBridge friends with another Mom whose son had neuroblastoma. We became friend-friends, from being in the same bad movie together. Her son did not survive, but she and I remain connected through her work as a neuroblastoma activist. She gives back to honor his memory.
I do my best to give back, too, as much in gratitude for my Kate’s positive outcome as to support the families of any kid facing cancer. We all share a raging hate for this disease. But I have found that giving of my “time, talent, treasure,” as the saying goes, has helped transform my strong emotions into healing.
For me, healing came through the hundreds of CaringBridge Journal entries I wrote when Kate was in treatment. And I felt it when a former colleague, on the verge of a neuroblastoma diagnosis for his son, asked me to come to the hospital. I couldn’t make the cancer go away, but it was so powerful to be there with them.
At a practical level, I have been able to contribute to improving technology at the hospital where Kate received her treatment. I am also a supporter of the Children’s Neuroblastoma Cancer Foundation, for which we once organized a garage sale that raised almost $10,000. This story sticks with me: We were about $1,000 short of what we had hoped to give to CNCF. I was thinking about how to make up the difference, when there was a knock at our door. A couple who had been following Kate on CaringBridge simply handed me an envelope with a check for $1,000. It was magical.
Support and Healing
More recently, I was invited to join the Board of Directors at CaringBridge, where I get to see support and healing from the other side. It takes my breath away. At a recent Storyteller breakfast, hosted by CaringBridge as part of Giving Tuesday, my husband, Matt, brought Kate, and our son, Ryan, to the event to say a quick hello before school.
I was interested to gauge Kate’s response. She knows she is a cancer survivor, but she is still a young girl. The breakfast scones interested her more than the room full of grownups gathered to celebrate and support CaringBridge.
But now Kate is starting to put things together. I have a feeling that as my daughter grows up, and begins to “own” the sharing of her health story, she will inspire and encourage others to get the help and support they need. It will be Kate’s way of giving back.
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.
Karen Hohertz-Jacobs, of Minnesota, is a CaringBridge Mom and Board of Directors member, as well as a Senior Director at Best Buy.