Our son, Penn, was diagnosed with High Risk B-cell Acute Lymphoblastic Leukemia on 3/24/21. He was 3 years old. Penn loved Lightning McQueen, swimming, and playing with his big brother, Pryce.
Penn was admitted to East Tennessee Children’s Hospital and immediately began treatment. We were told that Penn’s type of leukemia had the highest survival rate.
In his first year of treatment Penn became septic twice and had 2 seizures from the chemo they injected into his spinal fluid.
Penn entered the Maintenance phase of treatment in May 2022. His counts were not coming up as they should have. June 2022 we found out that Penn had relapsed. We were devastated.
Penn needed a bone marrow transplant to survive. Mom, dad, and big brother Pryce were all tested and Pryce was a 100% match!! Penn began an immunotherapy drug called Blina. He wore a backpack for 2 months that continuously infused him with Blina. Penn was back in remission and our family was getting ready to move to Nashville where Penn would get his BMT at Tri-Star.
We went to Tri-Star in September 2022 to have a full work up done on Penn. 3 days later we got the call that Penn had relapsed a 2nd time. He was no longer able to get a BMT because he wasn’t in remission.
The only option Penn had was to have Car-T cell therapy to get him back into remission to have a BMT.
Penn got his Car-T cells in December 2022.
Both the Blina & Car-T target the CD19 marker.
January 2023 we were told that Penn’s cancer had outsmarted the Car-T and was now showing CD22. Penn had relapsed a 3rd time.
We were out of options. We refused to believe that there was nothing out there to save our son. ETCH told us there was one more chemo we could try. We started that chemo while I searched for something. Anything.
There was a trial at St. Jude that Penn was eligible for! I had our oncologist reach out and Penn was accepted!
When Penn arrived at St. Jude his little body had been through so much. He needed blood and platelets multiple times a day. He started and finished the trial, but he was very sick.
Penn was diagnosed with C-diff, a bacterial infection called Rothia, and bacterial meningitis. He had nothing to fight off these infections.
Penn passed away on April 7, 2023.
He was 5 years old.
Penn was a force. He’s known for his love of Mario! He loved his family so much and fought so hard to stay with us. He was so funny & bossy! He loved water….swimming or just playing in it.
He’s our hero!