Warrior Stories
Alayna, Age 17
I was diagnosed with Hodgkin’s Lymphoma, Stage 2 in September 2021 when I was just 17 years old. My doctor informed me about Paxman and scalp cooling when I was diagnosed and I decided to give it a go.
My experience with the cold cap was difficult, but I’m so happy I persevered through. It was so worth it in the end to be able to keep all my hair. I had to wear the cap for 5 hours straight. The post cooling was the most difficult part for me. I found having a massage therapist come in to apply pressure points on my feet helped relive my nausea and take my mind off the cap.
I kept almost 100% of my hair, the only area I lost hair was around the ear where the cap did not reach. I’m so thankful I never felt the need to wear a wig, hat or head covering during this process.
I’m so unbelievably happy and thankful for Paxman for giving me the opportunity to keep my hair. I pushed through my treatments and was able to keep almost all of my long blonde hair.
Scalp cooling isn’t for everyone, but I would absolutely encourage other people to at least if it a try if they can. Being able to keep your hair during chemo kept me feeling whole during a time I felt I had no control.
"I would like to thank my Mom for carrying me through some of my darkest days, especially treatment days. She was there by my side advocating on my behalf throughout the entire process. She provided me with help and support with the cold cap every treatment and so much more. I couldn’t have done this without her."
Alayna, 17 years at diagnosis
Location: New Jersey, USA
Cancer Type: Hodgkin's Lymphoma
Chemo Drugs: ABVD
Francesca, Age 23
When I was first diagnosed and told I needed to go through chemotherapy, one of the most troubling side effects to come to terms with was hair loss. I desperately wanted to keep my hair, but knew there was almost an 100% chance I would lose all my hair. I began reaching out to other survivors and heard about cold capping. Finally, there was hope. Through my research on cold capping I came across Alayna’s journey and reached out to her to learn more about cold capping. Her success with keeping her hair inspired me to make the decision to cold cap as well.
I cold capped to retain a part of my identity, and to control an aspect of an otherwise uncontrollable journey.
Cold capping is not easy. It adds hours to your treatment, is extremely uncomfortable, creates a lot of anxiety around hair care throughout the entirety of treatment and after, and adds painful side effects on top of chemotherapy. However, every second was worth it to me as I continued to see hair on my head and myself in the mirror. Alayna was a very important resource for me as I went through cold capping. She answered any question I had and most importantly, she inspired me to keep pushing through each treatment.
Cold capping has allowed me to retain most of my hair. Hair is more than hair. It is a part of our identity. Cancer takes away many pieces of a person, and having the chance to save my hair has allowed me to keep a large part of myself. It allows me to go through my day without others looking at me and knowing I am sick. Because of this, keeping my hair has significantly improved my mental state and given me the confidence I deserve.
I kept the majority of my hair through cold capping.
Francesca - 23yrs at diagnosis
Location: New Jersey, USA
Cancer Type: Hodgkin’s Lymphoma
Chemo Drugs: ABVD
Jess, Age 21
Last April, I was a completely normal college junior. I had just returned back from spring break in the Caribbean with my friends and was just a week away from celebrating my 21st birthday! Everything was so good before I was told I had cancer. Hearing those words, it felt like my entire world came crashing down, completely upside down. One of my first thoughts were “I’m going to have to do chemo and I'm going to lose my hair.”
Before my first appointment at memorial Sloan Kettering I spent hours upon hours researching what treatment looked like for stage 2 Hodgkin lymphoma. I am so immensely grateful that I found Alayna’s tik tok account. I saw her tik tok video of her explaining the cold cap and what it has done for her. I remember thinking to myself, “there’s no way that girl is going through chemo right now.” I was in awe of how she was able to keep her hair! That was the first I’ve heard of the cold cap and I instantly knew I was going to cold cap as well. I value and love my hair so much. Losing it was my biggest fear. I decided to cold cap because it meant I had a chance to keep it. A chance for life to feel more normal during treatment and after treatment.
I went to my first appointment at memorial Sloan Kettering already knowing about the cold cap from Alayna and my team was on board with me doing it! Alayna and I were both in the pediatric section of the hospital and had the same AMAZING team of doctors and nurses helping us. I was the second patient there to do the cold cap right after Alayna.
I reached out to Alayna, and she was simply an angel. She had just finished treatment at the time, and gave me so much advice and words of encouragement. She walked me through what to expect with the cold cap and little tips that helped her. I had so many questions, and she was more than willing to answer all of them! Knowing Alayna and her success story going into cold capping inspired me so much throughout my chemo treatments!
Doing the cold cap was not easy. I knew that going in, but I decided to push through it because keeping my hair was so incredibly important to me. Everyone gives the advice, “it’ll grow back” & “you can get a wig.” This advice is true, but I don’t think someone fully can understand what it is like to be faced with losing your hair until it’s you. Because the honest truth is that nothing can make losing your hair okay. My hair is a huge part of my identity. Keeping it even while undergoing 4 months of chemotherapy is something I am so proud of. Everything got taken away when I got diagnosed with cancer. I had to leave school, my friends, normal life behind for 4 months. I didn’t want cancer to take something else from me too, my hair.
I had amazing results from the cold cap. I think I kept 90% of my hair. Nobody can tell I went through chemotherapy unless I tell them. I am now back at school and life feels normal again. Keeping my hair is something I am beyond grateful for. Cold capping is the best decision I’ve made and I think spreading awareness about it is so important. Changing the face of cancer!!!
Jess- 21yrs old at diagnosis
Location: New Jersey, USA
Cancer Type: Hodgkin’s Lymphoma
Chemo Drugs: ABVD
Elly, Age 17
The diagnosis of Hodgkin's Lymphoma came mid-December of my senior year, only a few weeks before Christmas and winter break
.When I was first told I had cancer, I thought my senior year would be ruined, and I was frightened. I had heard about the cold cap between my initial diagnosis and the day we discovered I was stage 2. The Jersey Shore University Medical Center had informed me that I could use the cold cap and that it had a high success rate as long as the cancer wasn't too far along. Once I discovered that I could keep my hair, my mom got in touch with Alayna's family.
My first interaction with Alayna's family was a FaceTime call with Alayna and her mother. Not only were they both amazing supporters throughout the enire process, but the first FaceTime helped me to understand what the cold cap did. On the call, we tried on the cap together, and I was taught to use it and things to do before we go to the hospital.
I decided to use the cap because of the events that would happen a few short months from the end of my treatment. I finished chemo on the last day of March and knew prom and graduation would be coming up. I wanted to be able to keep my natural hair for these events and not have short hair once I started college in the fall. Although these were important factors in why I chose the cold cap, I decided to keep using it because my hair gave me a sense of normalcy throughout my treatment. I was fortunate enough only to have to go to the hospital once every two weeks and not have to stay overnight. When I could, I made an effort to go back to school in person during the week I wasn't in the hospital. Going back to school and being with my friends with my hair made me forget what I was going through, even for a few hours a day.
Fortunately, the cold cap allowed me to keep most of my hair except for some of the hair on the top of my head and behind my ears. I did have a lot of thinning and a small bald spot on the top of my head, but it was easy to cover. Wearing the cold cap for an hour before chemo gave me terrible headaches and made me very tired. Even though using the cap made me stay for extra hours at the hospital, I felt it was worth it, and I'm glad I could keep most of my hair.
I am so thankful to the AJF for giving me the opportunity to keep my hair throughout chemo and supporting me throughout treatment and beyond. Connecting with other individuals who use the cold cap at Mary's Place allowed me a space to talk to young adults who had gone through similar experiences. I am forever grateful for Alayna and everything her organization has done to help me!
Elly - 17 yrs at diagnosis
Location: New Jersey, USA
Cancer Type: Hodgkin's Lymphoma
Chemo Drugs: ABVD
Melaina, Age 17
POV: Melaina's Mother
Dear Elaine Bodine,
I wanted to thank you for all your help during this difficult time with my daughter Melaina. The first thing Melaina expressed when she was diagnosed with cancer as a 17-year-old in her senior year of high school was she did not want to lose her hair!
Thanks to the Alayna Jayne Foundation, you made this possible. We would not have been able to afford the cold cap to prevent her from losing all her hair.
As you know, it is not covered under health insurance, unfortunately. This donation has allowed Melaina to return to school with confidence and a full head of hair. She will be able to enjoy the rest of her senior year and all its memorable moments, including prom. I want to thank you for providing the cold cap and all your emotional support. The fact that you and your daughter met via Zoom to go over the exact process and instructions on using the cold cap was beyond helpful. Also, continually checking in to see if we needed anything was comforting and necessary. I cannot thank you enough for everything you have done for not only Melaina but for me as well.
If there is anything we can do for you and the Alayna Jayne Foundation, please don't hesitate to ask.
Melaina - 17 yrs old at diagnosis
Location: New Jersey, USA
Cancer Type: Hodgkin’s Lymphoma
Chemo Drugs: ABVD
Gianna, Age 15
From being a healthy girl who rarely had to see the doctors except for checkups, in December of 2022, I was diagnosed with Hodgkin's Lymphoma. I'm a competitive dancer, and when I heard those words, I felt like everything came crashing down on me all at once. I just kept thinking about the fact that I might be out of dance and that I would most likely lose my hair. Growing up, I always loved my hair. As a dancer, we were always doing different hairstyles, making me love my hair even more. I have heard about cold caps in the past through other people who have been through cancer, but I also have several close friends who are close to Alayna and got me in touch with her and the Alayna Jayne Foundation.
Knowing my hair could possibly be preserved made me feel 100 times better. Even if it didn't work, there was a chance! Doing the cold cap, I knew with my staging, there was a high chance it wouldn't work, but I would take any opportunity to save my hair. As a teenage girl in this generation, little things like your hair matters to us. It took me so long to get my hair long, and one of my favorite hobbies is trying new hairstyles. When I met Alayna and her mom, they helped me so much. They set up a retreat at Mary's place, and I had so much fun. Getting to meet others who went/are going through the same thing is unfortunate, but at the same time, it's so nice to have people to help to help you through it that can also understand you and your feelings. They were so helpful throughout my journey, always asking if they could help whenever, offering the option to do the cold cap and stop if I ever felt the need to, setting up the retreat, and providing help in several other ways. Although I was unsuccessful with the cold cap, I'm so grateful to have had the opportunity to give it at least a try because you never know.
I completed one out of four rounds with the cold cap, and right before my 2nd round, I realized my hair was falling out more than just shedding. The cold cap itself was honestly not bad at also. It's freezing for the first 5-10 minutes, but you get used to it after that. I knew I still could have caused it after my hair fell out because it could have helped it grow back faster. Still, at that point in time, I was already in so much discomfort while going through treatment. I figured since I already lost my hair, why not let myself be a little more comfortable while going through this very uncomfortable process. I think having the option to do cold capping is amazing, and you should definitely try it if you want to. Even if the doctors tell you if you could potentially not work, that doesn't mean it definitely won't. You never know, and anything can happen. I'm so thankful and grateful for my experience and new friendship with the Alayna Jayne Foundation!
Gianna - 15 yrs old at diagnosis
Location: New Jersey, USA
Cancer Type: Hodgkin's Lymphoma
Chemo Drugs: ABVE-PC
Erin, Age 20
POV: Erin's Mother
In October 2022, our 20-year-old daughter was diagnosed with Hodgkin's Lymphoma. Our lives were thrown into a whirlwind as we learned about the treatment that would be needed to cure her disease and the side effects that treatment would cause.
As you can imagine, in addition to all the fears and concerns regarding the diagnosis and treatment plans, the prospect of losing hair due to chemotherapy was particularly devastating to our daughter. Our doctors told us there might be a chance to avoid this side effect using the Paxman cold cap system. We were elated by the opportunity to prevent the hair loss possibly but soon learned the costs of the system would not be covered by insurance. As we struggled with how we would pay for the system out of pocket, our doctors told us about the Alayna Jayne Foundation.
Elaine and her daughter Alayna created the foundation because they saw the need, particularly in the Adolescent/Young Adult cancer community, for expanded access to a treatment that can potentially save the devastating side effect of chemo-induced hair loss. For many patients, their hair loss is a loss of their identity and a side effect that remains long after treatment ends. The Alayna Jayne Foundation covered the cost of the cold cap system for our daughter, resulting in one less thing our family to worry about.
We are so blessed and forever grateful that Elaine and Alayna saw beyond their own experience and realized the unmet need in the AYA cancer community that access to the cold cap system provides. Their generosity forever changes us and hope that their foundation can grow to provide these services for many more cancer patients facing the prospect of chemo induced hair loss.
Erin - 20 years old at diagnosis
Location: New Jersey, USA
Cancer Type: Hodgkin's Lymphoma
Chemo Drugs:ABVE-PC,
Ava, Age 16
POV: Danielle, Ava D’s Mom
Ava and I cannot thank you enough for giving Ava the opportunity to use the Paxman cold cap. Our doctor and nurses were not really familiar with its use in the pediatric unit, and it was YOUR advocacy that convinced them to allow Ava, who was 16 at the time of diagnosis and treatment, to use the cold cap. Without you providing so much information to the hospital staff, she probably would not have been able to use it! Our family also probably wouldn’t have been able to afford the cold cap, had the foundation not provided it to us, free of any charge. Words cannot describe the appreciation that we feel for your advocacy, knowledge, and generosity. However, our gratitude for both you and Alayna extends way beyond your advocacy and the foundation’s financial assistance.
The first question that both Ava and my younger daughter asked when Ava was diagnosed with Hodgkin’s Lymphoma was “Is Ava going to lose her hair?” With tears in their eyes, the thought of even that possibility was so scary to both of them. We come from a large Italian family, mostly females, with tons of thick, long, flowy hair. We used to joke about how hairy we all are, and how many different tools and products we need to keep our manes “under control.” Thick hair is almost a defining characteristic for our family. The idea of no longer having our hair, even temporarily, is an upsetting, sickening feeling, similar to the thought of losing such an important part of oneself, a part of one’s identity.
Even though a person can obviously survive without hair, the idea of looking in a mirror at a head with no hair, as a 16 year old girl, is terrifying to most young women. As a clinical social worker, counseling adolescents and young adults for most of my career, I know what a difficult time that age group in particular has with self-esteem, confidence, body image, social anxiety, depression, relationships, etc, etc. In particular, the ability to style, color, cut, grow, curl, straighten, or even shave one’s hair is a way for teens to express themselves and one of the very few things that is within their control. It’s one of the very few characteristics that individuals can willingly change about themselves, and experiment with over and over again, with little to no consequence. Adolescence is such a tough time in general, and cancer robs individuals of so many things. To avoid the loss of hair and to keep that choice, that ability to control how your hair looks (to an extent), in a time when almost everything else is out of one’s control, is so meaningful, especially for this age group.
Ava continued to attend school in person, during her junior year of high school, almost every single day that she didn’t have chemo treatment or a doctor’s appointment. It meant so much to her to get up every morning, put her school uniform on, attend classes and any extracurricular activities that she was allowed to still participate in, and talk to her teachers, friends and school staff in person. It helped to lift her spirits on days when she felt absolutely awful. To be able to walk into school, like she usually does, with her school uniform on, and not have to put on a wig, hat, baseball cap or scarf on her head, meant so much to her. She was even able to continue cheering at her high school’s football games, and was able to wear the traditional cheer uniform bow. Again, using the cold cap enabled Ava to keep her hair, and to wear that defining characteristic of a cheerleader, which has been part of Ava’s identity for years. As a mom, it felt so good to see her continue to do these things and feel like a normal teenager/high school student, in a time when she was going through so much.
Additionally, having Alayna to talk to and consult with about anything, from how to alter her usual hair routine, so that she can continue to at least “look” normal, when she didn’t feel normal, to other tips when dealing with chemo was so helpful. Besides questions about shampoos and hair products, having Alayna to rely on as a support was priceless. And, the fact that Alayna was able to be there for Ava and answer her questions, while Alayna too was going through her own health struggles, is amazing and awe-inspiring.
Most importantly, you and Alayna have not only established a foundation, but a community of support, which is absolutely priceless at one of the most difficult times in a family’s life. We wouldn’t even have really known about the cold cap, if another one of the foundation recipient’s moms (Gianna’s mom) hadn’t been so supportive and reached out to us through a friend in common, when Ava was diagnosed in August 2023. I felt so much better, having other moms that I could rely on and ask questions to, in a time when I felt completely lost and helpless as a parent. You helped to ground me at a time when I felt that I couldn’t think clearly or see straight! I remember talking to you last summer, and that night, looking at the foundation’s website was literally like a glow of light in the darkness that I felt. I will never ever forget the brightness and hope that you and Alayna provided in those moments.
Ava - 16yrs at diagnosis
Location: New Jersey, USA
Cancer Type: Hodgkin's Lymphoma
Chemo Drugs: ABVD
