Last week we were able to catch up with Lisa Ward, the mother of our dear friend and DIPG warrior Jace. For those of you who may remember, Jace attended our 11th Annual CRF Celebrity Gala in November of 2019 and blew the crowd away with his motivation and charm. He was diagnosed with DIPG at the age of 20 on May 17, 2019, and was told he wouldn’t live to see his 21st birthday. Jace has well surpassed the doctors’ expectations as he’s coming up on 2 years since his diagnosis.
The past few months have proven to be challenging for Jace and his family as he participated as the second patient in the CAR-T Cells clinical trial at Stanford University. The CAR-T Cells trial works to reprogram the patient’s own T cells to recognize and target the protein B7-H3, a molecule that is found in DIPG tumors. The cells are then re-infused into the patient. Jace participated in the first round of the trial in the Fall of 2020 and then in the second round this past January. As a result, Jace’s tumor was reduced by 50% and the overall pons was reduced by 25%!
Following this great news, Jace was able to attend this year’s Super Bowl with his father and cheer on their hometown team the Kansas City Chiefs. Though they hoped for a better outcome of the game, it was a life-changing experience nonetheless. However, not too long after the Super Bowl, Jace and his mother had to return to California to treat a cyst that was discovered on the edge of his pons. Just last week, Jace underwent a procedure where an Ommaya catheter was aimed to be inserted directly into the cyst to collect surrounding cerebrospinal fluid that needed to be drained. So far Jace has been doing well, and they hope to return to California during the last week of March to participate in the third round of the CAR-T cell infusion without the cyst so that the T-cells could go directly to the tumor. These past few challenges have been made somewhat easier by connecting with other kids who are going through the same thing, like 5-year-old Kyra next door who is receiving her second round of the infusion.
One of the more challenging periods for Jace over the past few months was having to spend his 22nd birthday in isolation after news that his roommate was diagnosed with COVID-19. For those living with DIPG, every birthday is monumental and not taken for granted. To have to spend this occasion alone was absolutely crushing for Jace. Thankfully, after coming out of quarantine Jace tested negative for COVID-19 and was able to reunite with his loved ones.
Jace’s sheer determination, positivity, and strength are something to be marveled at. Even in the midst of the challenging year, his family has been through, Jace continues to take classes online at Kansas State University and holds an internship with the Emerson Collective where he frequently works under Reed Jobs, the son of Steve Jobs. Jace works within one of the branches of the Emerson Collective focused on rare cancer policy reform. He and Reed speak on the phone every week on trying to change advocacy and policy on DIPG.
Every day we are inspired by Jace and his family for their efforts in spreading light but also concrete change in their fight against DIPG. We will keep all of you updated on Jace’s journey, Full Steam Ahead!
By Sarde Gumalo