Clinical Trials are a Family Commitment

by Jessica Buscho

My curiosity about clinical trials and the potential to be on the cutting edge of cancer care began almost immediately after my diagnosis with stage IV colorectal cancer in April, 2017.  At my very first oncology appointment, my oncologist requested to test my tumor tissue tested to see if I qualified for an immunotherapy clinical trial; at the time the magnitude of this request didn’t occur to me (not to mention the idea that I would have to explain it to me 3 young children), and I didn’t qualify for the trial, but she planted a seed.

As it turns out, that particular trial went on to make a ground-breaking treatment change for a small (but important) group of patients: now certain patients could forgo chemotherapy and instead had immunotherapy as first-line treatment for colorectal cancer.  Imagine being a part of history like that: because some people were brave enough to try something new, they changed treatment for a whole group. Incredible.

I never could forget that I was almost part of this monumental change, maybe that’s why I developed such an interest in clinical trials.  Or maybe it’s because I became frustrated by limited treatment options available for stage IV colorectal cancer patients like me.  I remember talking to my doctors early in my course of treatment about what was the typical timeline for standard therapies and feeling broken.  I turned to bargaining: “I’m young,” “I have kids,” “I’ll be able to have more treatment,” “Can you give me a higher dose?” 

When that didn’t work, I started searching for people who defied the odds, who were living longer, and especially people who were able to reach the elusive NED (No Evidence of Disease).  Guess what?  I found a lot.  Many of the “exceptional responders” were young, often with young kids, and they had taken an ownership in their cancer treatment, going beyond “Standard Of Care,” and seeking out novel treatments like clinical trials.  

I wanted to do anything to see my children grow up, they were just 6, 8 and 10, so I knew I, too, would be someone who went to extraordinary measures to live.

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:

1. Explain it at a level that is appropriate for their age, but don’t underestimate their ability to learn and grasp big concepts.  Speak in clear language instead of broad terms.  We talk to our kids like they are adults (they are 11, 13 and 15 now), but leave out the nitty-gritty that won’t affect them.

2. Let them feel empowered by your ownership in your cancer story - they can take ownership too. Where age-appropriate, include them in big decisions.  This doesn’t mean let them pick your treatment, but make sure they feel heard when they have hesitations, concerns, or fears.

3. Be open to questions and remind them that the conversation never ends.  To encourage ongoing questions I will bring up a topic several times in different ways over a week or so.

4. Listen as a neutral confidant, pause before responding, and ask follow up questions about what they are saying or asking.  Allow them to have feelings and questions about trial participation without reacting - including body language.  This one can be tricky, but sometimes their questions are bigger, smaller, or different than we hear initially; something that sounded like fear might actually just be curiosity but if we react as if they are afraid (through words or expressions), then fear may develop.  And if you overreact, they may not ask the question next time.

5. Realize they are always listening.  Always.  I once took a call with a clinical research coordinator in the same room as my kids and thought that because we were talking in “trial speak” (numbers, letters, unfamiliar drug names) that my kids weren’t listening.  They were listening and they heard everything.  Oops.

6. Be honest about the demands and uncertainty of trials, especially if it is a phase 1 trial.  Trial schedules frequently have zero flexibility and the trial can end at any time, this means that planning in advance becomes quite a bit more complicated.  It also may mean having treatment at less-than-ideal times.  This can bring a sense of chaos for some, but we try to frame it as being flexible and spontaneous.  Remember to lean on your community when you need and communicate with your kids’ school. There can be a lot of fun in a surprise or last-minute outing when you are feeling up to it; giving up planning far in advance doesn't mean giving up fun family adventures.

7. Label side effects as you have them and remind them that it will get better.  After a few cycles, learn to plan ahead to help you through the harder side effect days or hours.  Your kids will see you adapting to your circumstances and learn valuable life skills.  Plan something fun for when you feel best.

8. When you get it wrong (as we all do sometimes), own it.  Tell them you could have explained something better and apologize.  Try again.  We all make mistakes, be gentle with yourself.  You are balancing a lot.

9. Remind them often that you are all heroes (and don’t forget to do this if the trial fails).  Every medical intervention that we have available today came because someone volunteered for a trial and their family supported them.  Tell them that their support is helping you help people all over the world.  Not many people get to be true heroes, but every clinical trial participant and their family is a hero.

10. Keep the conversation going in the best way for your family - that may be casual conversation, a back-and-forth journal, a text, or a regularly scheduled check-in.  As you go along they will understand more, and as they do they will have more questions.

Jessica is cancer thriver, mom of 3 beautiful children, and fierce advocate for Stage IV colon cancer patients. Find her on Instagram @tenacious_jess.