Family Starts AYA Cancer Foundation After Lymphoma Diagnosis

Elaine Riozzi Bodine and her daughter Alayna turned a life-altering diagnosis into a mission to support other adolescents and young adults with cancer. After Alayna was diagnosed with stage two Hodgkin lymphoma during her senior year, using a cold cap during chemotherapy helped her keep her hair and maintain her sense of identity as she returned to school and milestones like prom and graduation.

In an interview with CURE, Elaine said that experience inspired the family to launch the Alayna Jayne Foundation [hyperlink here], which now funds cold caps, wigs, room makeovers and retreats, offering emotional and practical support to patients and caregivers alike.

CURE: When Alayna was first diagnosed at 17, she was the first pediatric patient at Memorial Sloan Kettering Cancer Center to use a cold cap. As her mother, what was it like witnessing the identity crisis firsthand? And how did her success with the cold cap transform from a personal victory into your first professional mission for other AYA patients?

Elaine: Well, first, receiving a diagnosis of cancer is shattering for anyone, but especially a teenager. This was Alayna’s senior year of high school. We were looking forward to a year of celebration: graduation, prom, the anticipation of college, a time for her to really come into her own and discover her independence. That all came to a screeching halt when she was diagnosed. I remember one evening Alayna sitting in her room, struggling with the decision about whether she should undergo fertility treatment to freeze her eggs. At the same time, she was scrolling through her phone, and her friends were debating what dress to wear to a party that weekend.

That moment really put everything into perspective, for Alayna and for me watching her go through those struggles. As a parent, it’s heartbreaking. You want to protect your child. That’s your job. You’d rather it be you. That was the first thing I said to her; I wish it was me, because you just want to take it all away from them. Her success with the cold cap really helped her transition back into life after treatment. She was able to go back to school looking like herself. She may not have felt like herself, but she could pick up where she left of. She graduated, went to prom and got to do all those memorable activities at the end of her school year. For a teenager, it’s not about vanity. It’s about maintaining their identity. We’re already facing a mental health crisis in our youth. Now imagine being diagnosed with cancer on top of that. Mindset and outlook are so important. We tried to turn the negative into a positive and find purpose.

One day Alayna said, “Mom, Ikeep getting messages from other girls going through cancer, asking how I still have my hair.” I looked at her and said, “I think we found our purpose.” By the end of that year, we fully funded our first cold cap recipient through the Alayna Jayne Foundation.

In 2023, the foundation faced a heartbreaking irony. Alayna relapsed and could no longer use the cold cap herself. How did that reshape the foundation’s mission to include wig funding and more holistic support?

Earlier that year, we incorporated something called the Daisy Retreat because we quickly realized we were more than just the cold cap. We were a resource not only for recipients but also for their caregivers. One mom told me, “You’re the only one who truly gets this.” The doctors and nurses are wonderful, but they haven’t lived it. That connection is so important. We wanted the foundation to have a more holistic approach and help families feel less isolated.

When Alayna relapsed, we knew the treatment would be more aggressive and that she wouldn’t be a candidate for the cold cap. The night before Christmas Eve, she had to shave her head. That moment felt so cruel, so unfair and deflating.

Alayna embraced her new look, but she said, “I do want a wig sometimes, just to feel like my old self.” We quickly learned real hair wigs are expensive. Having seen both sides — keeping her hair and losing it — we knew we needed to fund wigs too, so every girl could look and feel like herself during treatment.

A Bone marrow transplant is very intensive. The medical team prepares you by explaining the patient will be on isolation for about two months in a sterile hospital room. During that time the patient will receive intensive chemotherapy several times a day for a week. The medical team nicknamed it, “The Killer Chemo” as it kills everything down to your bone marrow, hence the need for the transplant which is administered once the chemotherapy is finished. The patient then needs to start rebuilding new healthy cells in the weeks that follow. This is a dangerous time for the patient with a multitude of side effects.

As a pediatric patient, Alayna was allowed one caregiver, so I stayed with her. She had the bed and I had the chair. They encourage you to decorate the room. At that point, Alayna had lost control of so much in her life. Instead of decorating a dorm room, she was decorating a hospital room. She said, “Mom, I’m going all out,” and I told her, “Go for it.” Mindset is everything and what she did to that room was amazing. The staff had never seen anything like it. It lifted everyone’s spirits. It felt like a spa, filled with personal and practical touches. It helped staff see her as a whole person — not just a patient. They’d look at her photos and learn she had dogs, was a beach lifeguard and did triathlons. She told me, “I couldn’t sit here staring at bare walls for two months. I don’t know how the other patients do it! We should incorporate room makeovers into the foundation.” So we did, we give recipients ideas to create a wish list, order the items and ship them before treatment. It gives them something creative to focus on and helps create a comforting environment during a really difficult time.

Alayna is now a nursing student. Why is it important to support future medical professionals who have been patients themselves?

Any personal health experience gives you valuable insight and empathy as a nurse. We hope these students go out and make a difference in health care, and we feel privileged to be part of that journey.

How has Alayna’s story guided you when advocating for AYA oncology care?

Her story reminds me of the unique challenges these patients face, and Alayna continues to inspire me. AYA patients have very specific needs that are still unmet. The focus is often just on treatment, and the holistic needs get overlooked. Quality of life after treatment matters too. We want long, happy, healthy lives for these young people.

After everything your family has experienced, how do you balance grief with the foundation’s pay-it-forward mission?

I grew up in a family that faced many tragedies, and my father always said it’s the struggles that build character. We don’t always understand why things happen, but we can choose how we move forward. Our family unity carried us through. I truly don’t know how I would have done it without them. For me, turning grief and anxiety into something positive helps. Staying busy and helping others is both healing and rewarding. That’s what we strive to do through the foundation.

What advice do you have for caregivers about taking care of themselves?

You can give all the advice in the world, but in the moment it’s hard to follow because your child becomes the only focus. I definitely missed appointments and neglected my own needs. That’s why the Daisy Retreats are also for caregivers. The toll is emotional, physical, mental and financial. It’s overwhelming. I look back and it’s a blur. I think medical teams and social workers need to check in with caregivers too. I was fortunate to have a strong support system. There are resources out there, and it’s important to use them and take time for yourself. Because a healthy, supported caregiver ultimately helps the patient too. That’s what we all want — the best possible outcome for everyone.

Transcript has been edited for clarity and conciseness.

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