Elaine Riozzi Bodine and her daughter Alayna turned a life-altering analysis right into a mission to help different adolescents and younger adults with most cancers. After Alayna was recognized with stage two Hodgkin lymphoma throughout her senior 12 months, utilizing a chilly cap throughout chemotherapy helped her preserve her hair and preserve her sense of identification as she returned to highschool and milestones like promenade and commencement.
In an interview with CURE, Elaine mentioned that have impressed the household to launch the Alayna Jayne Basis [hyperlink here], which now funds chilly caps, wigs, room makeovers and retreats, providing emotional and sensible help to sufferers and caregivers alike.
CURE: When Alayna was first recognized at 17, she was the first pediatric affected person at Memorial Sloan Kettering Most cancers Heart to make use of a chilly cap. As her mom, what was it like witnessing the identification disaster firsthand? And the way did her success with the chilly cap remodel from a private victory into your first skilled mission for different AYA sufferers?
Elaine: Properly, first, receiving a analysis of most cancers is shattering for anybody, however particularly an adolescent. This was Alayna’s senior 12 months of highschool. We had been trying ahead to a 12 months of celebration: commencement, promenade, the anticipation of school, a time for her to actually come into her personal and uncover her independence. That every one got here to a screeching halt when she was recognized. I bear in mind one night Alayna sitting in her room, scuffling with the choice about whether or not she ought to bear fertility therapy to freeze her eggs. On the identical time, she was scrolling by her cellphone, and her buddies had been debating what costume to put on to a celebration that weekend.
That second actually put all the things into perspective, for Alayna and for me watching her undergo these struggles. As a dad or mum, it’s heartbreaking. You wish to defend your little one. That’s your job. You’d relatively or not it’s you. That was the first factor I mentioned to her; I want it was me, since you simply wish to take all of it away from them. Her success with the chilly cap actually helped her transition again into life after therapy. She was in a position to return to highschool trying like herself. She might not have felt like herself, however she may choose up the place she left of. She graduated, went to promenade and acquired to do all these memorable actions on the finish of her faculty 12 months. For an adolescent, it’s not about self-importance. It’s about sustaining their identification. We’re already going through a psychological well being disaster in our youth. Now think about being recognized with most cancers on prime of that. Mindset and outlook are so vital. We tried to show the adverse right into a optimistic and find function.
Sooner or later Alayna mentioned, “Mother, Ikeep getting messages from different women going by most cancers, asking how I nonetheless have my hair.” I checked out her and mentioned, “I believe we discovered our function.” By the top of that 12 months, we totally funded our first chilly cap recipient by the Alayna Jayne Basis.
In 2023, the muse confronted a heartbreaking irony. Alayna relapsed and will now not use the chilly cap herself. How did that reshape the muse’s mission to incorporate wig funding and extra holistic help?
Earlier that 12 months, we integrated one thing referred to as the Daisy Retreat as a result of we shortly realized we had been extra than simply the chilly cap. We had been a useful resource not just for recipients but additionally for his or her caregivers. One mother advised me, “You’re the one one who actually will get this.” The medical doctors and nurses are fantastic, however they haven’t lived it. That connection is so vital. We wished the muse to have a extra holistic method and assist households really feel much less remoted.
When Alayna relapsed, we knew the therapy can be extra aggressive and that she wouldn’t be a candidate for the chilly cap. The evening earlier than Christmas Eve, she needed to shave her head. That second felt so merciless, so unfair and deflating.
Alayna embraced her new look, however she mentioned, “I do need a wig generally, simply to really feel like my outdated self.” We shortly realized actual hair wigs are costly. Having seen either side — retaining her hair and dropping it — we knew we wanted to fund wigs too, so each woman may appear and feel like herself throughout therapy.
A Bone marrow transplant may be very intensive. The medical staff prepares you by explaining the affected person will likely be on isolation for about two months in a sterile hospital room. Throughout that point the affected person will obtain intensive chemotherapy a number of occasions a day for every week. The medical staff nicknamed it, “The Killer Chemo” because it kills all the things right down to your bone marrow, therefore the necessity for the transplant which is run as soon as the chemotherapy is finished. The affected person then wants to begin rebuilding new wholesome cells within the weeks that observe. This can be a harmful time for the affected person with a mess of unwanted side effects.
As a pediatric affected person, Alayna was allowed one caregiver, so I stayed along with her. She had the mattress and I had the chair. They encourage you to brighten the room. At that time, Alayna had misplaced management of a lot in her life. As a substitute of adorning a dorm room, she was adorning a hospital room. She mentioned, “Mother, I’m going all out,” and I advised her, “Go for it.” Mindset is all the things and what she did to that room was wonderful. The workers had by no means seen something prefer it. It lifted everybody’s spirits. It felt like a spa, filled with private and sensible touches. It helped workers see her as a complete particular person — not only a affected person. They’d have a look at her photographs and study she had canines, was a seaside lifeguard and did triathlons. She advised me, “I couldn’t sit right here gazing naked partitions for 2 months. I don’t know the way the opposite sufferers do it! We must always incorporate room makeovers into the muse.” So we did, we give recipients concepts to create a want record, order the gadgets and ship them earlier than therapy. It offers them one thing inventive to give attention to and helps create a comforting atmosphere throughout a extremely troublesome time.
Alayna is now a nursing scholar. Why is it vital to help future medical professionals who’ve been sufferers themselves?
Any private well being expertise offers you useful perception and empathy as a nurse. We hope these college students exit and make a distinction in well being care, and we really feel privileged to be a part of that journey.
How has Alayna’s story guided you when advocating for AYA oncology care?
Her story jogs my memory of the distinctive challenges these sufferers face, and Alayna continues to encourage me. AYA sufferers have very specific wants which can be nonetheless unmet. The main target is usually simply on therapy, and the holistic wants get ignored. High quality of life after therapy issues too. We wish lengthy, glad, wholesome lives for these younger individuals.
After all the things your loved ones has skilled, how do you steadiness grief with the muse’s pay-it-forward mission?
I grew up in a household that confronted many tragedies, and my father at all times mentioned it’s the struggles that construct character. We don’t at all times perceive why issues occur, however we are able to select how we transfer ahead. Our household unity carried us by. I actually don’t know the way I’d have completed it with out them. For me, turning grief and anxiousness into one thing optimistic helps. Staying busy and serving to others is each therapeutic and rewarding. That’s what we attempt to do by the muse.
What recommendation do you’ve got for caregivers about taking good care of themselves?
You can provide all the recommendation on the planet, however within the second it’s arduous to observe as a result of your little one turns into the one focus. I definitely missed appointments and uncared for my very own wants. That’s why the Daisy Retreats are additionally for caregivers. The toll is emotional, bodily, psychological and financial. It’s overwhelming. I look again and it’s a blur. I believe medical groups and social employees have to verify in with caregivers too. I used to be lucky to have a robust help system. There are assets on the market, and it’s vital to make use of them and take time for your self. As a result of a wholesome, supported caregiver in the end helps the affected person too. That’s what all of us need — the very best end result for everybody.
Transcript has been edited for readability and conciseness.
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