“The Luckiest Unlucky Boy”
When asked to share my story, it’s hard to know where to begin and what to share. How do I articulate what it’s like to be told that my perfectly healthy, beautiful two-year-old son had a brain tumor?
I will never forget the exact moment that we received the shocking news.
In December 2010, Chinny (a nickname for Christian) had gotten a mild concussion. His pediatrician requested a CT scan to be sure there wasn’t a brain bleed. There was a “shadow” found on his scan. The doctor said most likely there was nothing to worry about but, she made an appointment for an MRI at UCLA just to be sure. The moment we arrived, the doctor told us that Chinny had a brain tumor. How could that be? Nothing had been verified yet. Of course, my gut told me that the doctor must know what he is saying, but my heart was pleading for him to be wrong. Before we knew it, Chinny was diagnosed with a very large brain tumor.
A few days later, he would have his first craniotomy. Sadly, the surgeon determined that the tumor was attached to Chinny’s brainstem and that surgery was too risky and chemotherapy was suggested as an alternate treatment. Our hearts were shattered. The tumor wasn’t coming out. All of the research indicated a direct correlation between the amount of tumor removed and long-term survival. Since none of the tumor was removed, Chinny had a zero percent chance of living past five years. That night, standing by our son’s bedside in the PICU, we realized what we were going to be up against. Chinny was going to have to live with a brain tumor for the rest of his life.
His next surgery was to place a port under his skin so he could receive chemotherapy. Immediately afterwards, he started chemo. Having his port accessed each week was awful. Watching his little body constantly get injected with poison was heartbreaking. It brought tears to my eyes. After five months of chemo and even a little shrinkage, Chinny woke-up and vomited 14 times. We knew that meant the tumor had swollen or grown. We also knew that meant he would need emergency surgery to remove whatever they could of the tumor, regardless of the risks. Luckily, I had spent the last five months researching for the very best pediatric neurosurgeon in the country in case Chinny might need another surgery. What a blessing it was, in hindsight, that I was given the gift of time to do that. We found the very best in New York and off we went.
Miraculously, that doctor was able to completely remove Chinny’s tumor without causing any deficits. After just one night at home, Chinny began to hemorrhage internally. He was rushed to Children’s Hospital of Los Angeles. After ten days of blood transfusions, multiple sedations and scopes, an amazing surgeon was able to find the source of the bleed and sewed the artery completely shut. For the next three days, Chinny was kept sedated on a ventilator. Those were the hardest days of all. It took three weeks for Chinny to fully recover, but once released from the hospital, we’ve never looked back. It was a scary road and there were no words to describe just how agonizing it was to watch your child suffer. We finally knew Chinny was going to survive.
I’m happy to report that was almost five years ago and today, he is still tumor free. At our last appointment, the doctor told us that Chinny is “home free”. Wow, those words were the sweetest words a mother can hear.
I remember wondering, if I had the chance to turn back time and be given a different healthy baby, would I make that trade? “Never!” Chinny was meant to be my son and I was meant to be his mom. Maybe he was only to grace the earth for a few years. If that were the case, would I still choose him? “Yes!” I wanted the honor of fighting for him, taking care of him and loving him. I also know how important it is to never lose hope.
According to Chinny’s oncologist, “I have never seen a child at such a young age with such a large tumor, at such a compromising location recover completely unscathed.” Almost all children who have tumors removed from their brainstems have some type of residual deficit, but Chinny had none.
I think of my son as “the luckiest unlucky kid”. The chance of being diagnosed with a brain tumor is much less than one-in-a-million. The chance of a bleeding ulcer as a side-effect of brain surgery is so very small. The chance of a doctor removing the entire tumor without any side-effects is not likely at all. The chance that a child, who has gone through many surgeries and chemotherapy treatments – only to be perfectly healthy – without any deficits, is incredibly low. So at the end of this crazy experience, I can say that my little survivor is extremely lucky. Or, maybe the more appropriate word is blessed. Chinny is truly a fighter!