Chris' Story
Calling the diagnosis of a brain tumor “a Christmas miracle” may sound strange to most people, but to our family, we finally had a name to what was happening with our infant son, Christopher, born just six months earlier in June 1999.
Chris had cried all the time. His head had grown larger. By his December 20th six-month appointment, the doctor ordered an ultrasound for the day after Christmas, thinking Chris could have hydrocephalus (water on the brain).
Christmas Eve, I could tell his cry was wrong, that something wasn’t normal. We bundled him into the car. Half way to the doctor’s office, I noticed Chris having a seizure, then a second seizure, and a third seizure as we reached the doctor’s office.
The doctor called an ambulance. Chris was eerily quiet. At the hospital ER, the doctors ordered a CAT scan and started an IV. A specialist was called in.
The specialist later took us to a private room, with CAT scan in hand. It was blaringly obvious: Chris had a baseball size tumor in his brain – over half his brain. The rest of his brain was spinal fluid. Chris had severe hydrocephalus in addition to the tumor.
Immediate surgery to put in a shunt to alleviate the pressure on his brain was only the first of eight surgeries over the next few months. He had a 20% chance of surviving.
Chris’s second surgery was the day after Christmas – eight hours long, losing 2 ½ times his total blood volume, almost dying three times on the operating room table.
By New Year’s Day, Chris was moved from ICU, later having multiple shunt failures and many complications. By his 1st birthday, an MRI showed three more tumors. Surgery found an additional two. Diagnosis: choroid plexus carcinoma.
Since then, Chris has had a stem cell replacement, chemo, blood yeast infection, and other challenges. Last summer came the diagnosis of aneurismal bone cyst. His most recent surgery stabilized his neck.
Over the years, we’ve been navigating the school system and continuing with physical, speech, and occupational therapy. Chris continues to struggle with vision problems and asthma
And yet, now 10, Chris is a joy and a pleasure. He is happy no matter what he is doing.
Throughout it all, Starlight has been such a blessing in our lives.
Life used to be all about sickness and doctor visits and then we found out about Starlight - we were able to see that there is a world out there beyond cancer.
We have gone to musicals at the Paramount and 5th Avenue, Seahawks and Mariners games, and one of our favorite Great Escapes events, “Trick or Suite.”
Starlight works with the entire family. When one child is chronically ill, siblings no longer get the time and attention, Starlight offers opportunities for the whole family.
I believe that the musicals we’ve seen at the Paramount and 5th Avenue have helped greatly with Christopher’s brain development. I remember sitting, listening to the wonderful music during the performance of Cats and then watching Christopher lean forward in his seat anxiously waiting to see and hear what was going to happen next.
Without Starlight, my children would have never had the opportunity to go to a live performance and see a sports team perform. Starlight has made our lives more then doctors’ appointments and medical procedures.
We greatly appreciate the Great Escapes events for our whole family to enjoy!
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