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.
We also are riding for Ben, the son of one of our team members, who has leukemia and is also currently being treated for it.
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 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 should be home by the end of September.
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 (and still is), 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 is very aggressive, and at the moment there is no cure. We are working on treatments which will “prolong life” up to 5-7 years, and praying to God for a miracle in that time, whether through flat-out miraculous healing or through a cure being discovered in that time. We will be going to New York to get some treatment done at Sloan Memorial hospital there the end of this year.
We are hopeful.
