Ezra was diagnosed with stage 4 neuroblastoma cancer on October 4th, 2009 at the age of 13 months. Two days later, the Matthews found out they were pregnant again. For the rest of the month, Ezra spent weeks in the hospital and went through an initial round of chemotherapy. In early November, the Matthews’ found out that Robyn was pregnant with twins.
As the months progressed, Ezra went through 6 rounds of chemo, various treatments and was moving towards having the main tumor (above his left kidney) removed.
On March 1st, at Robyn’s scheduled pregnancy checkup, the doctor informed them she was 1-2 cm dilated. Her due date was July 21st – this was nearly 4 months early. Robyn was taken straight to the hospital where she was on bed rest for 2 weeks, but the twins weren’t waiting. On March 15th, at 26 weeks (3 1/2 months early) their 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, Price died.
Charley was still critical, and had many of the same issues as Price. He was rushed to All Children’s hospital in St Petersburg, FL where he received heart surgery and multiple brain surgeries. Charley is now home! He has mild cerebral palsy and a brain shunt that will remain with him for life.
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. The Matthews’ spent the entire month of June living in a hospital while Ezra received a stem cell transplant in an isolated, HEPA filtered room he was not allowed to leave for 30 days. Charley was one floor away in the same hospital, so Kyle and Robyn were able to visit him often.
The day before Ezra’s 2nd birthday, the Matthews discovered he had relapsed already, less than 4 months out of stem cell transplant. This meant his neuroblastoma was very aggressive, and there was no cure. Ezra was 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 he received one last round of chemo in Orlando, the cancer didn’t stop. Early on a Monday morning Kyle and Robyn lay in his bed with him and held him as he died. We miss him.