Embracing the Gift of Life: A Journey from Childhood Cancer to Double Transplant Recipient

How did you go about seeking a diagnosis?

My parents brought up the concern to my doctors, but they dismissed us and said it was nothing. After lots of gaslighting, we decided to switch doctors and finally got a diagnosis through a CT scan.

How long did it take for you to receive a diagnosis?

Probably over a year for my Bronchiolitis Obliterans diagnosis.

How did you feel when you received your diagnosis?

I honestly didn't know I was sick because I was so young. I didn't even realize that I was different from other kids.

How did you communicate your diagnosis with your loved ones?

Because I was diagnosed at such a young age, my parents were the first ones to take the news, which then they communicated with my other relatives.

What treatments have you undergone and how have they impacted you?

I've gone through chemotherapy, long term corticosteroid therapy, photopheresis, and plasma pheresis. Mainly the chemotherapy and long-term steroids made me experience brutal side effects such as compression fractures, stunted growth, infertility, steroid induced diabetes mellitus (now resolved), and so much more.

What is the most difficult part of your treatment, and how do you manage it?

The most difficult part is not knowing what to expect and not trusting your own body. Anything can happen at any time to you, and you just can't control it.

What has been the most challenging aspect of living with your condition?

Being immunocompromised for life is a difficult part of being a cancer survivor and 2x transplant recipient. You have to be mindful of so many things' people don't even think about everyday. Things like taking a shower every time you go out or cleaning the things you brought outside with you (phones, bag, etc.).

"Life is a precious gift, a chance to embrace every moment with gratitude and purpose"

How has your daily life and routine been affected by your condition?

I am currently not in school because of my acute lung rejection event and being immunosuppressed. Also having to take dozens of meds everyday and the fact that I have frequent doctors' appointments which includes many specialties.

How has your condition affected your mental health and emotional well-being?

It's definitely taken a toll. It's hard when you see your peers being able to do things that you can't because of your health.

What strategies have you found helpful for managing your emotions and thoughts?

Creating art is a major part of managing my emotions. I like to express my thoughts through drawing. I also like to wind down by playing video games.

How has your diagnosis impacted your relationships with your friends and family?

My family supports me really well, but I've definitely had "fake friends" who ghosted me after I told them about my diagnosis. Fortunately, now, I have amazing friends that support me incredibly.

What support systems have been helpful during your health journey?

Seeing other accounts on social media and realizing that I'm not alone in this journey was really encouraging for me. Also, connecting with people that were in similar situations as me is extremely helpful.

What advice would you give to someone who has recently been diagnosed with your condition?

There WILL be ups and downs but make the best out of the ups and never take things for granted. Be optimistic! You got this!

What advice would you give to your past self if you had the opportunity to go back in time?

I would tell myself that even though you will go through the hardest moments in your life, in the end, you will always have a story to tell so never give up hope!

How can others be more supportive and understanding of people with your condition?

Asking questions about my condition is a big one. Many people think it's rude to ask, but I actually think it's a kind gesture because that means they are willing to learn about me.

‍

Looking for support and resources as a fellow Bronchiolitis Obliterans warrior? Click here.

Want to find out more about Leukemia? Click here.

‍

Are you a chronic disease warrior, or know someone who is? We would love to hear your story! Contact us at marketing@jonda.io to find out more about how to get featured on Jonda’s Patient Voices. Let's inspire and educate others facing similar challenges by sharing our unique health journeys and raising awareness, together. 

‍

‍Disclaimer: Please be aware that the content of this patient story is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.