Excerpt: Bright Spot Network Shares the Leap, and Value, for Cancer Clinical Trials
ThriveNV has forged a new partnership with Bright Spot Network, a phenomenal support and information organization for young cancer survivors who are parents of small children. This amazing group shares personal stories, resources for parents to use with their kids, and support groups tailored just for parents of young children who have cancer.
Bright Spot Network is such an amazing resource for this often-overlooked segment of cancer survivors.
Since May is National Cancer Research Month, we are sharing an excerpt of one of the blog posts from Bright Spot Network's site about undergoing clinical trials as a parent of young children. Click the link at the bottom to read the full post and learn more about this partner organization.
Excerpt from Clinical Trials are a Family Commitment:
Standard treatment stopped working for me about 3 years after my diagnosis. I had been researching trials for over a year at that point and actively trying to enroll for about 6 months. I was being choosy because I thought I had time - my favorite trials were far away and I didn’t want to sacrifice our family time. But in December, 2019 the decision was made for me. If I wanted to do a trial, the time was now. All that was available was a first-in-human trial, I would be the first female receiving the treatment. I was apprehensive but excited. What if this trial worked as well as the one we discussed at that first appointment?
I consented. Then I realized I had to talk to the kids about it.
I looked for resources to help me…nothing.
I would have to wing-it (like we do most of the time in parenting with cancer). I didn’t give myself time to hesitate, our school had just had the science fair so I decided that this was my opportunity.
Scene: family dinner
Mom: My doctors want to do a science experiment on a new kind of medicine.
Middle Child: But not on you, right?
Mom: Yes, on me. I want to do it too.
Youngest Child: Why?
They had a lot of follow up questions and the conversation continued for a very long time. I’m not sure the science experiment analogy was perfect, but I did my best.
That conversation was 2 years ago, and I have now participated in 4 interventional trials. The kids have frequently traveled in our RV to trials, have favorite places at the research facility, and have become a bigger part of our decision-making about my care. It isn’t always easy, but we are happy to be doing this together and I know that my trials have given me more precious time with them.
More important than anything else is the ongoing openness and dialogue we have had about my treatment since that first terrifying conversation. Here is my top advice for talking to your kids about clinical trials:....