The Fight Continues Even After Being Cured
What is cancer survivorship?
It’s more time with family and friends, more time for school, end-of-year parties, exploring new places, and gaining independence. It’s driving up the highway at 1 a.m. as our daughter, Abby, flies in a helicopter with medical staff. It’s making plans, but not knowing if we will be able to carry them out. It’s hundreds of appointments, new subspecialists, new diagnoses, endless side effects, and complications. It’s holding Abby’s blanket while she’s sedated in a procedure, getting a new wheelchair, and attending funerals. It’s feeling tired and angry but also blessed to have more time.
It’s a lot to feel. I’m constantly bouncing around between feelings and experiences at opposite ends of the spectrum.
But those are our days in a nutshell. A constant swing, yet we always try to prioritize and allow the good to prevail. It is the life of a childhood cancer survivor.
Our daughter Abby was diagnosed in 2011, relapsed in 2014, and at the end of 2014, she was deemed “cancer-free.”
There was such a sense of relief hearing the words “cancer-free.” She did it! What felt like the impossible was met!! Yet we knew, even back then, that there was a long road ahead. There would be many battles ahead just to reverse the damage caused by the treatment that “cured” her.
It is 2021, and it feels as if Abby’s been fighting almost every day since. She still takes over 20 medications a day and has spent countless amounts of time in the hospital, mainly under ICU care. Although cancer in her body is no more, the fight continues. We have been lucky to spend an additional seven years and hopefully many more years with Abby. But our biggest hope is that maybe someday it will be less of a fight.
Being a childhood cancer survivor is hard. Abby is blessed that science, with a whole lot of hope and prayers, has given her the chance to be cancer-free. But the side effects from treatment have taken a toll on Abby’s body, and they’re so numerous I can’t even begin to list them all.
Graft vs. Host Disease (GvHD) from her lifesaving bone marrow transplant has ruled her life for years and almost took her life in 2016. GvHD has taken her mobility, a lot of independence, and that is why she continues treatment — even though there is no cure for it.
In just the last few months she’s faced Acute Respiratory Distress Syndrome in her lungs, liver lesions that are still being investigated, and severe heart failure, most likely acquired by her initial lifesaving cancer treatment 2011–2012. She needs a new heart, but side effects from her treatments have made her ineligible for a heart transplant.
So, what’s next? We make the hard decisions, the impossible decisions. Right now, the only option is a device called LVAD. This is a heart pump that will surgically be placed inside her, and batteries externally will power it. Yes, it’s intimidating and scary, yet also incredible that this exists and is an option.
This experience has shown me that we need to do better for childhood cancer survivors and all kids battling cancer. The survival rate for some childhood cancers has improved. Yet, the toxicity of treatments threatens the lives of survivors, from the quality of life to their life expectancy.
We are so thankful for these additional years we have had with Abby and the word survivor means so much to us all. Each additional day she is here with us is a gift.
Written by Patty Furco, mom of childhood cancer warrior.
The Furco family has been involved in raising awareness and money for childhood cancer research through the St. Baldrick’s Foundation. To learn how you can help kids like Abby, visit StBaldricks.org.