Ty was 4 years old in June 2021 when he was diagnosed with B cell Acute Lymphoblastic Leukemia, a type of blood cancer. He has completed his course of treatment and is in the survivorship phase of his illness journey. Survivorship is the period after treatment including long-term follow-up for health issues and addressing remaining emotional and psychosocial issues.

Ty’s mother Samantha shares how their family of five -Ty, his six-year-old sister Ellyot, younger brother Bodhi and Ty’s father Aaron – are navigating the aftermath of treatment on their lives and new issues that have arisen during this phase.

“My first reaction when Ty was diagnosed was complete and debilitating shock. My only concerns were how to help Ty get better and how we would manage our life, especially with Ellyot at home.

Our family reminded us to think of questions to ask the doctors, but when you have no experience with cancer you have no clue what to ask. Then at the hospital everyone is talking at you a mile a minute as your whole world is turning upside down.

As time passed and Ty was undergoing treatment our concern became his social development. He was a social beast that was outgoing and loved making friends and now he had to be isolated, especially since this was during COVID. We also realized that Ty’s diagnosis would have an impact on his sister Ellyot beyond the logistics of our day-to-day life during his treatment.

I am grateful that my sisters did some research on the internet and found Friends of Karen so that we could all get the support we needed. Our Friends of Karen social worker Beth made sure we had help from the organization to pay for transportation to the hospital and Ty’s illness-related co-payments. She also connected us to Jen, a Friends of Karen child life specialist, to address Ty and Ellyot’s emotional needs.

This has been especially important since Ty rang the bell when he completed treatment. Once it was done people expected to welcome us back and assumed everything would go back to normal. But it’s not like you snap your fingers and you’re back to your pre-cancer world.

During this survivorship stage new issues have emerged as Ty has anxiety stemming from the trauma of treatment. For three years he was out of the world he knew, had zero control over his body, and experienced so much pain. He was always mature and wise beyond his years, but now so much time spent in the hospital left him playing catch up physically and socially with his peers. All of this affected his confidence and sense of belonging.

Ellyot has also struggled as she was just three years old when Ty was diagnosed. Back then she was very attached to Ty, so when he got sick and was not at home it was like half of her was now missing. She also was thrust into Ty’s shadow as we had to focus on his getting well, which left her with nothing to call her own. Jen worked with her to explain Ty’s illness at her age level, something we did not have the tools to do. Jen is also helping Elly with the separation anxiety, feelings of jealousy and other emotional impacts that we’ve been told are typical for siblings. Elly’s time with Jen is something that is her own and just for her to talk about things that are bothering her and she learns ways to cope. Jen also sends me a write up of each session with the kids and suggestions of ways Aaron and I can help them.

I can’t imagine what our lives would have been like without Friends of Karen. It is a good feeling to know we are not alone when we are struggling, and that Beth and Jen are there to share a different perspective on things.

Friends of Karen gave us the valuable resource of ongoing support for these emotional issues throughout the phases of Ty’s illness. That is really something because no other organization offers that depth of support to families dealing with their child’s life-threatening illness.” – Samantha