Our son, Christian (known to everyone as Chinny), was diagnosed with a brain tumor in December of 2010. I will never forget the moment I found out. It was the most painful feeling in the world.
When I received the dreaded phone call and those terrible words no parent should ever have to hear, it felt like the walls of hell were coming down on me and my family. To this day, those feelings are just as vivid as the day we received his diagnosis. My poor, sweet, innocent, happy child was about to face death and experience a pain too cruel for a child. At only 2 1/2 years old, my boy was going to have to fight for his life.
He underwent a craniotomy in December 2010 and the tumor was biopsied. The doctors didn’t remove the tumor at that time because they realized it was attached to his brainstem and would be too risky of a surgery.
He underwent another surgery in January of 2011 to place a port under his skin so he could receive chemotherapy. Immediately after his second surgery he started chemo – and began a cycle of two drugs once a week. Having his port accessed was awful, and never got any easier. On a weekly basis his little body would get pumped full of poison and then I’d take my baby home to rest.
The chemo did all that it could, the tumor turned necrotic, and the doctors recommended surgery to remove what was left of the tumor. We flew Chinny to New York and had 99% of his tumor removed by an incredible surgeon. Hallelujah!! Six days after a very, very risky surgery and the nights of uncertainty, we returned home from New York. We began to celebrate – the surgery was a success with absolutely no deficits and Chinny was doing so well.
After just one night at home, Chinny began to bleed internally. We were hospitalized at the Children’s Hospital of LA for the next 29 days. Upon arrival, Chinny’s vitals were crashing, his blood pressure was so low and he was losing so much blood, they had to give him multiple blood transfusions to make him stable enough for anesthesia.
They needed to scope him to see where he was bleeding. It took 10 days in the hospital and 2 scopes under anesthesia, and all they had found were bleeding ulcers in his stomach that appeared to be healing.
He was put on heavy meds and placed in the Pediatric ICU in hopes of stopping the bleeding. It didn’t work. He began to bleed again and was rushed to the OR. Once again, the GI doctors scoped him to see if they could find the active bleed. They found the source and as they tried to cauterize it, he started hemorrhaging.
Luckily, an amazing surgeon was standing by in the OR. He had to cut Chinny’s little tummy open and sew the artery shut. I will never forget the surgeon running out of the OR to tell us he had to cut Chinny open. For the next 3 days, Chinny was kept sedated and on a ventilator as they anticipated his entire body would swell from such a severe abdominal surgery. Those were the hardest days of all.
Our friends were generous enough to donate their blood, but it still wasn’t enough after all his bleeds. The doctor asked our permission to use stranger blood for his transfusions. Incredibly, there had been a blood drive at CHLA the prior week and so many people came out to donate blood and platelets. One thing that brings us so much comfort and gratitude is all our friends (and kind strangers) who donated blood and are part of Chinny today. Literally. We can’t thank you enough!
A very long 19 days later, Chinny had finally recovered enough to be released from the hospital. Words can’t describe the happiness we felt to finally be going home! That was July 24, 2011. I will not forget it, because ever since that day, we have been a “normal” family again. Our gratitude is never-ending. This is the life I want for him – always. And now that I am in a position to help join the fight, I am riding to CURE BRAIN CANCER!!!
Tara Hackley – Chinny’s Mom