The Perpetual Outlier

Colin has had a wonderful summer and really relished being at home. Most significantly, he has enjoyed a renaissance of himself: he is engaged, motivated, curious and vibrant. If Colin finds an adult to buttonhole in a conversation, his engine will start and keep going. On our return from Memphis, he consumed the entire flight from Philadelphia to Ithaca regaling a new friend on a variety of subjects. The real resurgence started shortly after leaving Memphis and has only continued since then.

On September 6, Colin had a follow-up MRI at St. Jude and Dr. Gajjar sat us down to explain that the results were horrifyingly dramatic. Visible change in tumor wasn’t necessarily enormous, but evidence of swelling and distortion to the brain showed what should be crippling changes to Colin’s brain since an encouraging June scan. Based on the scan alone, Dr. Baker, our palliative care doctor, said that Colin shouldn’t be conscious. However, Colin didn’t get the memo.

“The pictures and the child don’t correlate at all,” Dr. Gajjar said, throwing up his hands in befuddlement and amazement. He asked to see us again before we left Memphis and spent much of the time watching Colin on his sketch board practicing cursive, calling out “Mom, mom!” as he showed me different ways of making the letter B.

Another Off-Road Adventure

When we were in the PICU at Maria Fareri Children’s Hospital (Westchester), struggling with the decision of how to handle an unimaginably large tumor that had wended its way up and around the brain stem, we scribed this quote from Dr. Emmett Brown in Back to the Future: “Roads? Where we’re going, we don’t need roads.”

Colin is yet again charting his own map. We have no room for arrogance about the dissonance between the pictures of Colin’s brain and his clinical condition. The words alone were enough to convince us that they were confident of what they told us, but the looks on everybody’s faces spoke volumes.  We have a precious opportunity to enjoy time with Colin, knowing that he stands not at the edge of the precipice but, evidently, in thin air well over the edge. He stands—no, dances— on a perfectly transparent sheet of glass that we cannot comprehend but that threatens to shatter at any moment.

Nobody can answer the question about prognosis because the two main metrics we would look at to make a determination, the imaging and clinical condition, are so vastly different from each other. According to the MRI, Colin shouldn’t be doing anything at all. In reality, Colin is enjoying better quality of life than he was six months ago. He is basically asymptomatic, with only occasional flashes of headaches or dizziness.

Message Delivered

What is next? Living.

This summer, we risked what we felt was fragile quality of life for the opportunity of more of the same. What we bought with that gamble was so much more than we could have expected. We placed our chips down and spun the wheel. We hit double-zero and we know when to cash it in and walk away from the table. Run, not walk. Sprint, not run.

Our St. Jude team strongly supports our desire to have fun as much as is reasonably possible. I had hoped to take Colin on the trip to Japan that yet again expressed interest in. However, the long flight and necessity for a long period away from home are too much and too risky. Our planning time horizon is short, so we are focusing on what is going on in the next week or two.

To this end, we quickly planned a trip to Florida. Colin and I got home very late on Wednesday night and on Thursday, we bought tickets to Orlando. Our amazing community has come together making this a special trip, and we’re really looking forward to it.

Officer Colin

Another big event that’s been in the works essentially since we arrived home is Colin’s new job as a police officer with the Ithaca Police Department. He will be sworn in by Ithaca’s mayor, Svante Myrick. This has ballooned into a major event; rather than explaining the details, I’ll paste links to various news coverage that’s come out so far. We are looking forward to this being a huge event. The Northeast Elementary fourth grade is joining us as part of a field trip and officers from Tompkins County, as well as surrounding counties, will be coming as well as many friends and family.

We are grateful for this opportunity for Colin, and he is incredibly excited to start his new job as receptionist at the police department. We will be streaming the event on Facebook and I’m sure there will be plenty of additional news coverage following the event.

In addition, Ithaca’s Common Council has proclaimed Monday, September 12 to be Colin Hayward Toland Day. There is no doubt that we live in a compassionate community. Ithaca is Love.

On a similar note, Colin had a wonderful birthday celebration; we missed his actual birthday while he was in treatment, so we made up for it by opening up the house for a Saturday afternoon. He chose a Hello Kitty theme (long story) and many out-of-town visitors as well. It was a wonderful day, despite a bumpy start; Colin had been experiencing some morning vomiting and had a bad morning that day. I eventually figured out it wasn’t anything to do with tumors but an herbal anti-inflammatory, boswellia, that I have since discontinued.

Colin’s new boss, Chief John Barber, showed up with some of Colin’s colleagues and delivered his uniform. We had an incredible cake donated by a baker in Pennsylvania through the organization Icing Smiles. So many people came and brought food and many dozens of cupcakes and cheery Hello Kitty balloons. It felt like an extension of Camp Sunshine with our camp friends and others who came a long way to enjoy the day with us. We also presented Colin with his “big present,” a hot tub that we have now set up on the back porch and enjoy pretty much every day.

We are thoroughly humbled by the outpouring of support for Colin and our family. We are unspeakably grateful for the time we have had and for every day that we have with Colin.

There is so much more to say about these momentous events as well as the lovely days of summer, but that will have to wait. Colin has a job to start and school to continue; he has been extremely enthusiastic about returning to school. On Thursday, we start a new adventure and will continue as long as Colin says, “Go!” He is driving the bus and we’re all just along for the ride. Hold onto your hats.

News Coverage

http://www.ithacajournal.com/story/news/local/2016/09/01/no-giving-up-ithaca-boys-fight-life-inspires/87707696/

http://abcnews.go.com/US/year-sworn-honorary-police-officer/story?id=41848045

http://fox8.com/2016/09/07/9-year-old-boy-battling-brain-cancer-will-live-his-dream-of-being-a-police-officer/

http://www.littlethings.com/colin-toland-honorary-cop/