In 2006, Chris and Denise learned their two-year-old son, Cole, had acute lymphoblastic leukemia (ALL). Between the ages of two and fifteen, Cole received chemotherapy, a bone marrow transplant, and most recently, CAR T cell immunotherapy. He was one of the first pediatric patients at Dana-Farber Cancer Institute/Boston Children’s Hospital to receive this treatment, just last year.
This year, Cole and Denise participated on the Patient Perspectives Panel at the CRI Immunotherapy Patient Summit in Boston on July 27, 2019. After the Summit, Caroline Offit, associate director of patient engagement, and Sofia Balog, project coordinator, discussed Cole’s experience growing up (and Denise’s experience raising a child) with cancer, exploring treatment options, advocating for immunotherapy, and sharing their story.
Denise (far left) and Cole (second from left) share their experiences on the Patient Perspectives Panel. Photo by Adrianne Mathiowetz
Caroline: Cole, how did you feel sharing your experience at the CRI Immunotherapy Patient Summit?
Cole: Before speaking, I was very nervous, but once I got up there, I felt comfortable because I knew what I wanted to say. It felt good because I knew I was helping people.
Sofia: What did you share with your family and friends after the summit?
Cole: I told them about the Summit, and they said: “‘Oh that’s cool.’ You get to help people.” I felt it was a great experience, because I knew I would be hopefully helping people to learn.
Caroline: Cole and Denise, what did you both personally learn from the summit?
Cole: I learned more about how immunotherapy works and that it doesn’t just work for one type of cancer. It can actually work on multiple types of cancer.
Denise: I thought it was really good that the summit covered many questions that patients and caregivers have, especially on the basics of immunotherapy. It was good to learn how immunotherapy works, as well as new possibilities for the future. It was helpful and hopeful to hear the doctors discuss different immunotherapy options for different types of cancer and challenges in their own research. It was nice to broaden our horizons in knowing how far-reaching immunotherapy has become.
Caroline: Denise, one thing that you mentioned on the panel was the importance of a collaborative approach. Could you tell us more about why this was especially important to you throughout Cole’s CAR T cell treatment?
Denise: From a patient or a caregiver standpoint, regardless of which role you have, it’s a multifaceted approach. You’re not just communicating with an oncologist. You’re dealing with doctors from different disciplines like a cardiologist or a neurologist. So it’s important to be at a facility that has that collaborative, communicative approach, where people are coordinating and communicating from different disciplines.
It’s important to not only consider a patient’s physical well-being, but also their psychological well-being. We relied on ancillary support services from Child Life Services while we were at Boston Children’s Hospital.
Sofia: Cole, are there things that surprised you about your experience?
Cole: My experience in the hospital at Dana-Farber was good because I already knew some of the nurses and doctors who had treated me before, during my bone marrow transplant. I wasn’t really that nervous. It just felt comforting.
Caroline: Are there resources out there you would recommend to patients and their families?
Denise: There are resources out there, but it’s hard to find what is specifically relevant to your personal situation, especially when you get to a point where you need immunotherapy and you’re not looking for information on generic treatments. You’re looking for information on a highly specialized situation, so there are limited resources out there in terms of educating people about that.
That's one reason why I like the CRI summits. They are absolutely wonderful and create an opportunity for people to gain firsthand knowledge from the experts, and you can trust it. That’s the important thing. When you’re making decisions for a loved one, or for yourself, you don’t have time to do tons of research and talk to a lot of different people. You have a narrow period of time, so you want to go to trusted sources that you can rely on and give you confidence in your decisions. Knowing about immunotherapy, the tried and true science behind it, is so important.
When you’re making decisions for a loved one, or for yourself, you don’t have time to do tons of research and talk to a lot of different people. You have a narrow period of time, so you want to go to trusted sources that you can rely on and give you confidence in your decisions.
Caroline: Denise, why is advocacy work important to you as a caregiver?
Denise: I think many patients feel like a cog in the wheel. I think it’s important that they understand that they are the most important cog in the wheel because everything happens to them and what is or isn’t done affects their life. I think the absence of having an advocate means, unfortunately, that possibly you wouldn’t get as much care. The nurses and doctors try to pay attention to things that happen, but when you’re the caregiver, you’re there day in and day out and you see everything.
In this case it would be Cole, my child. I knew I was his best advocate and that I needed to help him communicate with the entire healthcare team. It could be something as simple as how he’s feeling or something he noticed about himself. Feedback is especially important during CAR T cell therapy because anything little could mean something big, and you need the medical team to be aware. It is best when you are proactive—when you tell your doctor early on rather than later. If you catch things later, a lot of times the effects are much more substantial. So you want to try to minimize the potential side effects. The caregiver, or patient advocate, is just as important as the medical team because they need to relay information.
A caregiver can be comforting not only from a physical standpoint, but also from a mental standpoint—understanding what their loved one is going through and how they’re feeling. The caregiver can listen to or sense when their loved one is starting to feel emotional—confused, angry, depressed, or hopeless.
Information flows from the top down. In other words, the caregiver or the patient need to share every aspect of their experience so that all of their physical and mental needs can be met. When the doctor understands the patient perspective, they can better help the patient.
Cole and his mother, Denise
Sofia: Denise, what are the first things that you would like another family to know? What would you say to another mom or dad that is going through the same or similar situation?
Denise: Not to sugarcoat things: it sucks. It’s the worst thing. You never really think it is going to happen to you, and you certainly don’t want it to happen to a loved one. But when you’re in it, the best piece of advice I think—I know it sounds cliché—but it’s best to take things day by day because this experience is overwhelming. There’s a lot of information to absorb. There are a lot of decisions to make. There are a lot of emotions, deep rooted emotions to deal with, so when you focus on the day to day, it becomes something more manageable. It won’t seem as overwhelming. It affects every aspect of your life, and it’s not just when you’re going through the treatment. We’re extremely grateful that Cole is here and that we’ve gotten through what we have. He is still dealing with side effects but he is getting better.
It’s also helpful to talk to others who have gone through it. There are very well-meaning people, but like with anything, talking to somebody who’s been through it is most helpful because they might be able to share their experiences, solutions, coping mechanisms, useful medical information, or doctor referrals. So it’s helpful to know that you’re not alone and that those who have gone through it can be a resource for you. If you have questions, you can talk to them. It’s helpful when you’re able to be around or to talk to somebody who knows what you’re going through who can understand it in a different way.
It’s helpful when you’re able to be around or to talk to somebody who knows what you’re going through who can understand it in a different way.
Caroline: Cole, what would you like other patients to know about immunotherapy? What advice would want to hand down to someone else?
Cole: I would probably let them know that everything will be okay. There will be hard times, but you’ll get through them. Everything will be fine. You’ll get back to normal. It might be scary sometimes, but if you're confident that you’ll get through it, you can do it.
To read Cole’s full story, please visit his ImmunoCommunity profile. We invite you to join the ImmunoCommunity to share your experience with immunotherapy.
To learn more about the latest immunotherapy research and treatment for childhood cancer, we encourage you to attend or tune into the CRI Immunotherapy Patient Summit Series.
Please visit the CRI Clinical Trial Finder to search for clinical trials or to speak with a Clinical Trial Navigator.