The Christensen Family's Story
Cole was born in 2009 and at just 15 months old, after numerous doctor appointments, was diagnosed with a brain tumor.
“Shock. We were both sick. There is nothing you can do; you don't know what you can do to fix that. My stomach just dropped and you just feel completely helpless. Your child should never have cancer. It was the last thing that we would have ever imagined was wrong with our son,” said Amy, Cole’s mom. Cole was diagnosed on July 9, 2010, with a stage 3 Anaplastic Ependymoma brain tumor. This is a very rare type of tumor, mostly found in kids around the brain and spinal cord.
Cole battled through a nearly 10-hour surgery following diagnosis. After surgery, the surgeon came out and told Cole and his nearly 50 family members and friends that they removed it all. He told them that he had to scrape a lot of nerves to get it all out and the results of that would be partial paralysis. At that point, they couldn't guarantee that those nerves would regenerate and heal over time. As a result, Cole had limited movement on his right side. In addition, they feared that he wouldn’t be able to swallow so they had to put a trach in, for which remained for approximately one year.
“After a year, he was breathing fine. Handling everything fine to the point where in the middle of the night he pulled it out himself and we couldn’t get it back in. He knew it was time that he didn't need that anymore,” said Amy.
Chris and Amy were told that for that type of tumor, there was no type of chemotherapy treatment available so the standard was surgery, remove was much of it, if not all of it, as you could. Following this, Cole would need seven weeks of radiation.
“They told us that they don’t typically do radiation on kids under two years old. But they didn’t have a choice with him. We went straight from Children’s Hospital to UNMC for seven weeks of a radiation.”
From the radiation, Cole battled a lot of nausea. Because he was so young, he had to be under anesthesia for every single radiation treatment, making the treatments three times as long as normal.
“It's painful to watch your child have to go under anesthesia when you know they are going to feel horrible when they wake up,” said Chris. After Cole completed radiation, he had standard MRIs every three months. Cole spent the next year of his life cancer free and re-learning how to talk, eat, walk and other fine motor skills.
After about a year, the physical therapist noticed that he was losing some of the functions that he had, so Cole’s family scheduled an MRI. The tumor was back. In July, 2011, Cole was diagnosed with another tumor; this one was located by his carotid artery. He battled through three months of chemotherapy and went to Memphis to have surgery to remove the tumor. When they surgeon went to remove the tumor, he found what looked like a calcified pebble; the chemo had hardened the tumor and due to the risk of cutting the carotid artery, they left it alone and sent Cole and his family home.
Three months later, Cole began to lose the ability to use the left side of his body. The tumor had regrown around the old tumor. Cole and his family went back to Memphis right away, and they were able to remove the new and hardened tumor. This was a very difficult surgery with extreme risks (but then again all of his surgeries were). Cole then went to St. Jude’s for seven weeks of radiation. Before leaving they did an MRI, and Cole was cancer-free.
On Aug. 24, 2012 Cole had another MRI in Omaha, and it showed regrowth at the same location of the last tumor. This means that the radiation treatments were no longer effective.
There is no cure for this type of cancer. All that can be done is remove it and radiate it. There is no chemotherapy that will defeat it. “At some point I think you look at your child and say, how much does this child have to go through. Cole still had a wonderful personality and he took everything in stride. It's just so hard to watch your child go through all these treatments and experimental treatments and if it doesn't work, it's just really hard to just to know when the time has come that you can't keep going through treatments,” said Amy.
Chris and Amy both stayed home from work. They tried to take him out and do things with him as much as possible. They focused all their time on Cole, as long as they could. Cole fought his cancer until Dec. 18, 2012; he was pain free and surrounded by love when he passed.
“We can't just settle with treatments that are outdated and don’t work.” Chris and Amy are huge advocates for the disease and for Team Jack. They continue to raise awareness by sharing Cole’s story with others. “It allows us to feel like we are helping make a difference, helping raise awareness and keeps us involved with other families that know what we've gone through. Being part of Team Jack is almost like an extra family."