Patient experiences: Leighton’s story
Meet Leighton, a child treated with RYLAZE, and her family.
Hi Leighton. Thank you so much for joining us today. Can you tell me who you’re sitting next to?
Momma and Dadda.
That’s right. What are you holding?
My stuffie.
Does your stuffie have something special about it?
Yes, because he has a port, he has an access just like me.
He does, that’s amazing. Does your doggy get special medicine just like you, too?
Yes.
Can you show me how he gets medicine the way you do?
Woop! Like that.
I think obviously from day 1 it was a huge impact. Here we are sitting in this little tiny room in the emergency department, and discussing treatment for our daughter’s leukemia.
I think when we found that Leighton was allergic to the drug, that was the first time in treatment that we really hit a fork in the road.
After I realized that she had this reaction and this drug wasn’t going to work moving forward, I think I felt really defeated.
Up until then, we’d been hitting our milestones. This was the first time that we really had a situation where the treatment wasn’t working and we had to make a decision and talk about clinical drugs.
We knew that we had to find a way for her to get the medication somehow.
When we found that we had the option of, to join the clinical trial, it made me feel so happy that there was something else out there and there was another avenue that we can explore to make sure that Leighton gets the treatment that her little body needed.
To have it available to us, we were so grateful and we’re forever grateful.
How many more pokes do you have after this?
Zero!
What? This is your last one?
Yes and then next time I come to clinic, I’m going to be 5 years old. My birthday’s pretty soon.
Wow.
Number 1 thing that’s made this easy for us is Leighton, by far. We’re the luckiest parents in the world to have her as a daughter.
I strongly believe that instilling positivity in her and her mind and strength and courage has helped her and will help her down the road beat this and just be stronger because of it.