Cookies for Kids’ Cancer Blog

New Clinical Trial Gives Hope to Children Battling Cancer: Christopher’s Story

Filed under: childhood cancer research — The Good Cookies @ 8:02 pm September 5, 2017

Jackie Thorne courageously shares the story of her son Christopher and his battle with neuroblastoma.

My second son Christopher was such a happy adventurous boy.  When he was five months old, in October 2011, he got really sick. Just out of nowhere my fun loving, high-energy boy was just laying down all day with a high fever and it really scared me. I took him straight to the doctor’s office where we stayed all day with them trying to figure out what was going on. Finally they decided to admit him to the hospital for observation because they just weren’t sure why his fever wasn’t coming down. It turns out he had strep that went septic. I thought this was the worst thing that I could ever experience as a mom. We were in the hospital for three weeks, in the intensive care unit for part of it, and he had to have three surgeries. Christopher was finally discharged after Halloween with orders to follow infectious disease doctors. Yay! Wonderful news, I was so ready to put that horrible ordeal behind us, little did I know what was about to happen just a few weeks later.

After we got discharged we had follow up appointments with the infectious disease doctor, just to make sure all his levels were down and he was on the mend. Well, one of his numbers that showed inflammation was going back up so the doctor ordered an ultrasound of his stomach to see. He said if he got worse to bring him back in ASAP. Over the weekend, Christopher developed a large bump on the side by his eye. It was pushing his eye, causing it to bulge forward. The day before nothing was there, and the next morning there was what looked like a large goose egg on the side of his head.

I was stunned and I rushed him to the hospital because I thought the infection was back. When he was dealing with the strep he also had cellulitis around that same eye. We got to the emergency room and they almost immediately took him for a CAT scan. Afterward, the nurses were acting funny with me and wouldn’t tell me much, aside from that they were admitting him. Eventually, somebody told me an oncologist would be meeting with us. I sat there thinking, “What does an oncologist have to do with strep? Surely he can’t have cancer on top of having some random septic strep infection. How can we have two unrelated sicknesses back to back?” I thought they were wrong and it was just the infection. Dr. Jacobsen met with us that night and the next day he had a neurosurgeon do a biopsy. Through all of this, I was in some kind of denial. I was adamant they were wrong, the biopsy would show them it’s just more strep infection, I thought.

After the surgery they called us into this small little hospital room and told us with 100% certainty that it was neuroblastoma. They told us that we had to wait for all of the other testing, but they were sure. Everything just stopped. I thought the worse was a three week hospital stay. I had no idea we were just preparing to fight for Christopher’s life shortly after. We started treatment almost immediately after the tests came back.

Christopher had six rounds of chemotherapy. He handled it like a champ and was always happy. During chemo, he played and loved on us. He was a huge mama’s boy and I wouldn’t have it any other way. He loved his family and was always happy and playful when we were with him. Of course, he charmed the nurses and other people he would come in contact with during treatment. He never let any of the treatment slow him down. To him,  it was just normal hanging out at clinic or hospital, or when taking medicine. He was too little to know any differently, so he did it with a smile.

During the last phase of the protocol he relapsed and I knew this evil cancer was never going to let my Christopher go.  He went through stronger chemo and more radiation. The doctors put him in some trials in the hopes that something would work to finally kill this evil disease that was trying to take my baby.

On January 25, 2013 just four months after he relapsed, just 14 months from original diagnosis, Christopher passed away in his sleep at home. He was still in treatment and we were waiting on scans to see if the last chemo had worked.

I wish there were more standard protocols for when a child with neuroblastoma relapses but it seemed like a lot of guesswork. We can do this or we can try this but we don’t really know which one of these will help or if it will at all. It was heartbreaking to slowly watch your child slowly slip away from you more and more and you’re fighting with everything and it’s not enough.

This is why raising awareness and money for more research is so important. Nobody should have to go through losing their child to this evil cancer. We have kept fighting, even though Christopher is gone, so that other parents don’t have to lose something as precious as their child.

(photo: Tough Cookie Christopher)

 

 

 

 

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