Alex

“Survivor Alex”

Alex had just turned 4 and we were getting ready for his birthday party.  The night before, on Friday, September 17, we found out that his belly was swollen and hard.  We rushed him to the ER, where we were told that he has a mass the size of a grapefruit in his abdomen.  That same night, he was transported to Lucile Packard Children’s Hospital, but had to wait until next Monday until he could have a biopsy to determine if the mass was malignant.  This was the longest weekend in our life.  The scans showed that he also had four small spots in the lungs – two on each side.  Upon receiving this news, we immediately knew that he had a cancerous tumor that had spread to the lungs.  The biopsy confirmed that he had Embryonal Rhabdomyosarcoma, a rare form of childhood cancer that starts from a muscle cell.  He was given 52% chance of 5-year survival.

Treatment started on September 30 and included 42 weeks of chemo, six weeks of radiation of the abdominal tumor (as it was inoperable), and surgery of the lungs to remove the tumors there.  Alex was declared in remission in December 2011.  However, during the lung surgery, the surgeons could not remove one of the spots in the lungs, because it had shrunk with the chemo and was not visible to them when they opened his chest.  It was later spotted on his scans and the doctors were monitoring it.  The biopsy of the other tumors they removed from the lungs showed that all cancer cells were dead, so we had presumed that the remaining spot was also dead.

Alex was doing well and about to move from scans every 3 months, to scans every 6 months.  It was a miracle that his doctors decided to do one more scan on October 14, 2012, before they moved him to a 6-month schedule.  The scan showed that the tumor in the lung was active and had grown.  The cancer was back. We don’t even want to think what could have happened, had we waited 6 months until the next scan.  Prognosis after relapse is grim, but we refused to ask for percentages.  We knew that we would fight with all we had.  The silver lining was that this was not a new tumor, but one that was not treated all the way the first time around.  Also, we were told that tumors that take longer to relapse have better chances than the ones that don’t improve with treatment or relapse soon after treatment is over.  Alex started experimental treatment, which at first reduced the tumor activity, but not its size.  Several months later, the scans showed that the activity had increased, thought the tumor size was still the same.  Our doctors pulled Alex out of the study and he started traditional treatment.

We were told that the tumor was most likely inside the lung and close to the heart and blood vessels, so surgery won’t remove it in its entirety.  Alex’s oncologists decided to move ahead with the surgery.  There were so many people praying for Alex.  Friends came to the hospital to be with us during the surgery.  The surgeons finished much sooner than expected, so I assumed that they had bad news for us.  Thankfully, the news was good!  The tumor was not inside the lung, but hanging outside of it.  That was a miracle we hadn’t even thought of asking for!  They were able to remove the entire tumor that was visible, though there was still some microscopic disease left.

Alex had 4 weeks of radiation and more chemo.  He finished treatment on October 13, 2013.  He is doing well and his last scan looked good.  We continue to pray for his full recovery and minimal or no long-term side effects.  Alex is our Hero and the proud big brother of two precious boys!  He hadn’t slowed down for a minute and never stopped to amaze us during his entire treatment.