30 DAYS/30 STORIES® 2022
My name is Kailey and on February 28th, 2017, I was diagnosed with Acute Myeloid Leukemia with flt3. I had 4 rounds of chemo at Lehigh Valley Reilly Children’s Hospital and on August 14th, 2017, I had a bone marrow transplant at Children’s Hospital of Philadelphia. My stay at CHOP was almost 8 weeks long and to be honest, I don’t remember most of it because of being sick with so many viruses after. Once home, it was followed by weekly appointments at CHOP, and it always made me miss my team at Lehigh Valley. Through all of it, I was on a trial chemo drug called Sorafenib until November 17th, 2018. After my transplant, I developed pneumonia multiple times which led to a ton of hospital stays. This is still a frequent issue with my lungs and illnesses. Ultimately, I ended up with chronic lung disease called Bronchiectasis. I was on weekly infusions until May 2020 because my immune system wasn’t developing on its own like it should have been.
After coming off my infusions and getting my immune system stronger, my CHOP doctors finally decided that it was time to start my vaccines that I had to get all over again from when I was a baby until now. It was thought that maybe some of the vaccines would help with my reoccurring pneumonia. That has unfortunately not been the case as I ended up with pneumonia multiple times in the past few months. My lungs are just not where they should be at 23 years old. I do daily nebulizer treatments and a vest treatment to help break up all the mucus that gets trapped in my lungs.
I went to college for 3 classes in 2020-2021 to become a photographer but with my body being so delicate after everything, I physically can’t handle getting up and down constantly when taking pictures. I still can’t work because standing for too long makes my legs swell up and honestly just hurts my body. So many think that once the chemo is done for a pediatric cancer patient, we should be back to how we were. The truth is nothing is the same; nothing will ever be the same. All the things we loved doing as kids and teens is now done in a way that our bodies can handle and for each of us that is different.
In 2021 I found out that I have a pinched sciatica nerve which causes severe back pain. I’ve been in physical therapy and aquatic therapy on and off for over a year now because of the pain. I now do daily exercises to keep the pain at bay just so I can do my daily activities. Throughout my treatment, I always stayed positive. I would always tell myself “You can do this. Nothing is going to stop me now.” I still struggle even 5 years post-transplant and diagnosis, but I always make sure to keep pushing through.
This November marks 4 years off chemo and honestly, my life will never be the same. I’m still in and out of the hospital, but PCFLV has always been there to help me and my family during those times. PCFLV is honestly the best organization that anyone could have by their side during a cancer diagnosis. They focus on the whole family, and many don’t. Cancer affects the whole family!
If you’re able to donate anything to PCFLV, just know it is going to help a family that needs their spirit lifted, help with a bill, or to be included with a day out with family or fellow kids/teens to feel “normal” for just a few hours.
Written by Kailey, age 23
Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip