Ezra was diagnosed with stage 4 neuroblastoma on October 4th, 2009 at the age of 13 months. On October 6th we found out we were pregnant again. After weeks in the hospital and an initial round of chemo, in early November we were able to do our first ultrasound and already see Robyn was pregnant with twins. As the months progressed, Ezra went through 6 rounds of chemo, various treatments, and moving towards having the main tumor (above his left kidney) removed.
On March 1st, Robyn and I went to her dr for her scheduled pregnancy checkup, and the dr told us she was 1-2 cm dilated. Her due date was July 21st – this was nearly 4 months early. We took Robyn straight to the hospital where she was on bed rest for 2 weeks, but those babies weren’t waiting in there, and on March 15th, at 26 weeks (3 1/2 months early) our twins Price and Charley were born. Price was 1lb 13oz, and Charley was 1lb 15oz. They both had multiple heavy complications, including level 4 bleeds in the brain, and on March 22nd, the twins’ 1 week birthday, God took Price back from us.
Charley was still critical, and had many of the same issues as Price. He was rushed to All Children’s hospital in St Pete, who had better drs to handle the brain trauma. He received multiple surgeries, including having a shunt put in his brain, then removed as it wasn’t working correct, a new shunt put in, then another surgery to move that shunt. It’s now working great and will remain with him for life. He also had heart surgery to fix a murmur, which went well. Charley came home after 7 months in the NICU. He will continue to have minor complications due to being born so early, but we are working with doctors and therapists, and should be able to address these as he grows.
Talk about a whirlwind of emotions. 2 weeks after Price died, on April Fools Day, 2010, Ezra had his neuroblastoma tumor successfully removed. His left kidney was fully involved with the tumor, and was also removed. He recovered well, and we spent the entire month of June living in a hospital for stem cell transplant for Ezra – in an isolated, HEPA filtered room. Charley was in the same hospital, only 1 floor away, so we were able to visit him often, although Ezra wasn’t allowed to leave the room the entire 30 days.
The day before Ezra’s 2nd birthday we discovered he’d relapsed already, less than 4 months out of stem cell transplant. This means his neuroblastoma was very aggressive, and there is no cure. We went through a couple other options, but his cancer was still showing no response. We were slated to start a trial using a drug called Nifurtimox, but Ezra’s condition began deteriorating rapidly, and he was unable to qualify for the trial – literally less than an hour before he was about to get the first pill.
On November 8th, at 2:50am, Ezra passed on. The Neuroblastoma had kept growing, and although we did one last round of chemo in Orlando, it didn’t stop, and early early on a Monday morning we lay in his bed with him and held him as he died. We miss him.
Here’s a video put together while we were in Orlando.
The Ezra Matthews Story summary video was shot and edited by a friend who’s family by now, AJ Hurley. We’re grateful for the memories.