Birthday Week - Nolan

Posted: Mar 31, 2023

Happy birthday Nolan!

In Ohio, Nolan celebrated his 7th birthday and is Casey Cares' 175th birthday this year!

Casey Cares knows that for a critically ill child, each birthday is a special milestone celebrating life. For the children in our programs, it not only marks another year, but it also demonstrates a great achievement. Casey Cares staff and volunteers work hard to send out each of our kids a special birthday package through our Birthday Blast program - we send over 1,000 a year. This simple act of kindness delivers joy and hope to our kids who are undergoing treatment.

An Emergency MRI

Nolan is diagnosed with medulloblastoma.

His mother Jill states, "Nolan wasn’t acting like himself, so we paid a visit to his pediatrician after battling what we thought was a virus for a week.  His pediatrician sent him for an emergency MRI at Nationwide Children’s Hospital. We found out immediately following the MRI that he had a Medulloblastoma Sonic Hedgehog brain tumor."

Sonic Hedgehog pathway activation is the most aggressive form of medulloblastoma and tends to spread through the ventricles of the brain and into the spinal cord.

Nolan later joined Casey Cares in 2021. With activities given by Casey Cares like a Columbus Crew soccer game and holiday light schows, Jill says that "we have really enjoyed some many - Virtual Ballets, Jurassic Quest, and the fun packages have been some of our favorites."

As a mother of two, Jill appreciates that "Casey Cares meets kids where they are. Not all kids can go out into public places, so there is a nice balance for inclusion with “safe” events. Meaning we can still participate and not have to worry about a large crowd or we can attend and still feel comfortable and Nolan not become immediately exhausted. The surprise gifts and gift boxes are a major bonus when he’s having a rough week of chemo."

As a parent to a child who has cancer, Jill find that there are many challenges.

"The biggest one is the fear of the unknown. Living in the moment and taking it one day at a time when the diagnosis is so major. Your child may look “healthy," however, their body is fighting a battle that a parent can’t fully understand," she says.

Then and Now

Ever since Nolan received his initial diagnosis, he has had major strides.

Jill states, "For almost the first year of his diagnosis, we lived at the hospital while received in-patient chemotherapy and bone marrow transplant. He lost all of his hair and couldn’t keep on weight. He was able to have a 6 months break and live up every child’s dream of Disney World and had all he caould eat ice cream until he had a reoccurrence. He was able to grow all his hair back and have a few growth spurts.

She continues, "He had to receive a round of radiation due to the reoccurrence, but handled it well. He’s currently receiving out-patient chemotherapy which allows him to attend school and socialize amongst other children with perimeters placed for his safety and learning. He’s able to build friendships, a love of Math and Art while the school helps meet his medical plan needs. He doesn’t always have the energy to function as a “normal” kid his age, but his big personality and lively spirit have always shined through. He’s also able to spend more time at home in his environment with his sister and parents."

Birthday Time

The family's love for their son is evident. 

Jill concludes, "He is a fun loving and spunky kid. Even though his diagnosis doesn’t always make him feel the best, he is always happy to be able to come home and be a kid instead of living at the hospital. He has such a great outlook on his treatment and stays positive through all the hurdles he has had to overcome."

It'll be a great party for sure! "He’s really looking forward to turning 7 with a Pokémon party and celebrating with his older sister (whose birthday is 12 days after his), parents, grandparents, and a few friends."

You can help bring lasting memories to critically ill children like Nolan - click here!