My name is Kristin Zastoupil. I live just outside of Dallas, Texas. My son, Bryton, is 16 years old and starting 11th grade at Forney High School.
In the fall of 2020, Bryton was in the beginning of 7th grade and caught what we thought was a stomach bug. We were traveling to see family in North Dakota and the whole time we were there he just kept feeling worse and worse.
He wasn’t getting better so we took him to the hospital. The doctors did tests, but they didn't know what was wrong with him. It was a long couple of very scary days before the doctor came in the emergency room and said, “we think Bryton has leukemia.”
That's news no parent ever wants to hear. It's a very surreal moment. And you keep thinking, “this isn't happening to my kid. This isn't us, this is a nightmare.”
Bryton was diagnosed with Acute Lymphoblastic Leukemia (ALL) on October 20, 2020, and we were told, “leukemia in kids is very treatable. We have a great prognosis rate. It’s going to be ok.” As we went on during that 1st month, we learned that Bryton actually had a very rare form of ALL because of his genetics. While most children going through ALL treatment require weekly chemo the 1st year and then monthly treatments in year 2 and 3, he needed weekly treatments the entire 3 years.
During treatment, he had lots of obstacles and hurdles that he had to overcome, including several drug shortages. Our son faced 4 drug shortages during his treatment. Each one created a lot of fear and uncertainty that he was not going to be able to get the medicine he needed. How could there be uncertainty in whether there is or isn’t medicine available? How can we be told he has a treatable form of cancer and then not get the treatment? How could we be faced with this multiple times? Our care team were facing these questions too, they definitely didn’t want to be in this situation either.
Bryton’s first shortage was for a medicine that was in a global shortage for years, no one had it, this terrified us. We were afraid he wasn't going to be able to get what he needed, and with his rare genetics, his protocol called for more of that medicine than any other pediatric cancer chemo protocol.
My mom found Angels for Change, and she reached out to me and said, “I think you need to call Laura Bray. I think you need to ask them to help and see if they can advocate for Bryton. They advocate for patients just like you guys.”
I reached out through their website and Facebook page. Laura from Angels for Change replied right away. Laura was this bright light in a very dark time. We had lost a lot of hope that we were not going to be able to get the medication that Bryton needed.
We spoke to Laura every other week, and she would let us know if there was going to be enough supply coming for Bryton to get his doses. She kept us updated on everything and answered all of our questions.
It gave us great comfort to know there was someone in our corner, and it made us so grateful. Our hospital team tried to give us hope, but they could only assure us that we had 2 weeks worth of supply, they were struggling with this uncertainty too! Bryton needed 30 weeks worth of this medication. It was so scary waiting week by week to know if he would get care. It’s hard to understand how our amazing doctors have to deal with shortages everyday too.
Whenever Laura called she would give us hope. “We've got another batch coming in, and there's about 6 weeks worth of supply for patients.” Laura was just incredible to reach out and walk us through everything. She shared so much information with us and answered all of our questions. We really felt that knowledge is power and she helped us feel that power and understand the process.
We experienced a couple of other shortages, in year 2 and 3 of his journey, we experienced a Vincristine and a Methotrexate shortage. We knew we could call Angels for Change and they could help us and our hospital if needed. Mostly we knew they could share information to remove the uncertainty.
Additionally, we had a hard time getting Bactrim, because it was in short order. Bactrim is a very common antibiotic. Children fighting cancer need this medicine for their entire treatment to help protect them from life-threatening infections which can be a complication of their low immune system due to treatments. How can we be out of something as simple as antibiotics in this country too?
We were lucky enough to find Angels for Change, and Laura, when we needed that chemo medication the most early on, and had we not had that opportunity to work with her and let her advocate for Bryton it would have been a very dark time. Every week we were holding our breath that he would get to go and receive the medication that he needed. Laura provided us with that hope, communicated with us, and helped us navigate that process. This means so much to our family.
Thankfully, in August of 2023, Bryton rang the bell after almost 3 years of treatment. Bryton is now a junior, and we find great joy in him getting into the “normal”, busy, teenager life; going to high school, getting his driver's license, and things other kids take for granted. I am so proud of my son and the strength he has shown.
We made it through treatment, together as a family. He is cancer and chemo free! Yet, we also had to face 4 different life-saving medicine shortages. This seemed so unfair. We should be able to ensure that all patients receive their medicine while they fight cancer. Thank you to Angels for Change for working to help patients and ensure care.
