Featured family

Oncology FAN member and Miles' mother, Stephanie, tells us about her families oncology journey.

Tell us about you and your family’s sickle cell journey:Miles was diagnosed in 2016 with central nervous system (CNS) risk Langerhans cell histiocytosis (LCH) in Chicago, IL. We moved back to the Dallas-Fort Worth metroplex to be near family for his treatment. He tried a few different chemotherapies before finally stopping his last treatment, an at home pill, in early 2021.

Read his full story in our Health & Wellness Library.

Why is being on the family council so important to you?While we were in active treatment, our lives revolved around our hospital experiences. At the same time, our empathy for all sorts of situations increased. Living through all of that gave us a perspective about what could really help people through these difficult times. Being able to be a part of the council to consider and create ideas for families like ours is an important part of helping the hospital understand how to make positive improvements and address the needs of patient families.

What is your favorite thing to do as a family?Our family is very into sports. We love being active and sharing athletic experiences with others. Any weekend, you can find us playing whatever sport is in season.

What is your favorite oncology program event/camp that you have done as a family and why?Our favorite events while at the hospital are during the holidays. It’s a hard time to be there, but all the efforts made by so many to bring cheer really help families who are there.

What other things you think would be helpful for people to know about you or your child’s journey?Miles is doing amazing things now. We continue to watch closely and get regular checkups. Being out of treatment has its own stressors. Moving toward “normal” is a process and is different for every family.

What is one tip or piece of advice you would give to another parent who is just beginning their journey?Keep the hope going strong. All situations are unique but the one thing that is consistent is trying to keep the positive energy around you and your other family members (siblings, etc.), it can really help.