In January of 2015, nearly five years after completing treatment, a routine scan revealed a very small tumor lurking in one of Colin’s ventricles. It was innocuously small and was causing no side effects, but it was also in a different location from the original tumor.
There was no doubt that we would pursue surgery (#4) but it was unclear what to do about therapy to follow. Because the cancer had spread beyond its origin, the more or less standard recommendation was to do cranio-spinal irradiation (CSI), which affects the entire brain and spine. Also, this typically means that the ependymoma is very difficult to cure and has a high probability of coming back, even with the most aggressive treatment. Due to our concerns about the effects of the radiation, particularly on his hearing, we were apprehensive about moving forward with CSI immediately.
We ended up traveling to Augusta, Georgia, where Colin would be the first child to try an experimental immunotherapy drug under a single patient IND (investigational new drug) called Indoximod. They expected to open a clinical trial, but it would not be available soon enough to be helpful for Colin.
Dr. Boop did Colin’s surgery in Memphis and, soon after, we relocated to Augusta to start the trial, a process that we expected to take a month or so. Colin also started an oral chemotherapy, temazolomide. During a follow-up scan a few months later at St. Jude, we discovered that the ependymoma was back.
With this news, we became clear that the slim hope that a novel treatment might cure Colin had evaporated. This had become a tactical battle against the disease, taking measures that would cause the least harm and give him the most benefit. We landed back in Memphis for brain surgery #5, a simple procedure that confirmed that more tumors certainly were ready to burst forth.
We struggled with the decision to move forward with CSI at St. Jude and ended up deciding to pursue proton therapy at Mass General under Dr. Yock because proton therapy can be more precise and the institution has taken a conservative approach to using it. She made a very thoughtful plan to spare the marrow of his spine under the assumption that he would have further chemotherapy. She also avoided areas that had been irradiated during his initial treatment.
Unfortunately, by the time we were ready to start treatment, the tumors had spread throughout his brain. We had to leave Boston right after Thanksgiving and were given a prognosis of three to six months, which also meant Colin’s last Christmas (December, 2015). I quickly found a Phase II clinical trial in Dallas for Everolimus, an immune suppression drug that has some promise with cancer and is approved for a different childhood brain tumor.
During this time, Colin took his Make-a-Wish trip to Hawaii, where we went on a magical multi-island cruise. After getting back, we discovered that the ependymoma had only continued to grow. Despite this setback, we wanted to continue the drug, which has limited side effects. Based on anecdotal information from other families, we felt there was a chance that it was working but with a delayed effect, and pursued that strategy through Rochester.
And still, the tumors continued to grow. At this point, May of 2016, Colin became symptomatic. However, the tumors had consolidated enough that there was good reason to perform another surgery, so Colin returned to Memphis for surgery #6 (fourth with Dr. Boop).
At this point, we revived the conversation about CSI and Colin’s new plan involved some photon radiation and also proton radiation at the newly opened facility. Radiation went smoothly and we went home with the idea of following up with a treatment regimen I had been researching. Our fundamental goals had not changed, but we continued to seek out any reasonable treatment that could give him more quality time.
As it turns out, Colin wasn’t a candidate for this regimen, which relied on the tumor having similarities to certain breast cancers, nor was he eligible for any of the other trials we looked into. When we went back to St. Jude for our first follow-up scan in September, we received the dire news that he had horrible swelling in his brain and he had very little time left.
In a mad dash, we planned a quick trip to Florida and he was sworn into the Ithaca Police Department and became Officer Colin. Clinically, he kept improving and the next scan showed that the tumors had backed off and the swelling had gone down considerably.
In the spring of 2017, we were on a trip to California where Colin had a medical emergency and went into a coma. We rushed from Palm Desert to the Children’s Hospital of Orange County, which was much better equipped to take care of him. He was shaking with a fever that wouldn’t subside and started to struggle to breathe, so we intubated him. Fortunately, he only needed respiratory support for a few days and soon woke up. It’s likely that he had a virus that caused temporary brain swelling, though we could never get a consensus among the specialists.
Even though there was no indication that this incident was related to ependymoma, this was possibly the scariest of Colin’s brushes with death. We already knew that his cancer was terminal, but we held onto the hope that this was something else even as the medical team counseled us that this was the end and that we should consider making arrangements to bring him home on a medical flight.
Instead, Colin came home like a dignitary with an epic escort from the airport. In the following months, we focused on his continued recovery and the effort to find a suitable clinical trial. We turned down one through Memorial Sloane Kettering in New York but ended up finally settling on another at Columbia Presbyterian in September, 2017.
The trial drug proved to be rougher on Colin than we had expected but he remained in good spirits throughout. However, it did not have the desired effect and the tumors continued to spread. A sudden increase in symptoms sent us back to New York City. Though the scan was terrifying, a neurosurgeon came by to tell us that he could help Colin with surgery. At the brink of disaster, it was an easy decision and it allowed us to have a comfortable Christmas at home.
Unfortunately, it wasn’t long after the holiday before we faced another major decision. This time, he suggested a single approach that would clear out the bulk of the remaining tumor. This procedure, tumor resection #8, proved to be Colin’s last. We did come home but landed back in the hospital for reasons that were initially unclear but certainly required specialty care.
We spent five fraught weeks mostly in the ICU at Columbia Presbyterian. He would improve but then flag again and I suspect he had a pulmonary embolism when he had a new feeding tube placed. At the point when we left the hospital to return to St. Jude, we realized that he had issues with his sodium levels, which is not uncommon with brain tumors.
This period was difficult and we went through most of it as a family divided between Ithaca and New York City. When it was clear that they were unable to help Colin, we asked to be transferred to the team that knew Colin best, so we found ourselves once more Memphis-bound on a medical flight from New York.
After a week or so back at St. Jude, it became clear that Colin was nearing the end. When I asked if another surgery would help, I think they thought I was in denial, but I was just doing what I always did. You always have to ask, I explained. We were incredibly lucky to have ended up in the hands of people who knew Colin and our family. The building was new but many of the nurses were the same ones who cared for Colin when he was two.
For the last several years of Colin’s life, I made only a few blog entries because most of our communications came through his Facebook page, Officer Colin: The Youngest Member of the Ithaca Police Department. He had an incredible life and touched many people. Colin knew that he made a difference in the world, even though he didn’t make it to his eleventh birthday.
Colin ended up having three “last” Christmases and had the opportunity to embark on a fulfilling vocation. It all was much more than we could have expected or even hoped for. He was remarkable, resilient, and taught everyone around him deep lessons about how to live.