Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

September 10, 2016

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.

Colin Takes on the World

Colin Takes on the World

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.

20160907_132034

Seven Years: Colin and Amar

“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.

Officer Colin

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.

August 27, 2016: Colin's Hello Kitty themed birthday party

Colin Meets His New Colleagues

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.

Colin Blows Out the Candle

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/

14 Comments »

  1. Tamiko, Ian, Aidan, Colin — we love you all. No roads is right. Hang on!

    Comment by Karen Graubart — September 10, 2016 @ 10:32 am

  2. Congratulations on your new position Colin! You are an amazing kid, stay strong!

    Comment by Gary Phifer — September 10, 2016 @ 10:44 am

  3. I am forever amazed at Colin’s zest for life. Colin you are an example of strength and courage. We love you !
    Megin and your Hudson family.

    Comment by Megin — September 10, 2016 @ 10:53 am

  4. Tamiko, I love the imagery that comes through in your posts. Over the precipice and dancing. It sounds freeing, living the way we all should, doing what you really want to do and enjoying as much as you possibly can. So many lessons to be learned from an amazing, miraculous young man. My your family have the boundless energy to keep up!

    Comment by Pam Frost — September 10, 2016 @ 11:02 am

  5. What a beautiful article. Colin is amazing – a miracle. He inspires me. What a great community you live in. Good luck at your new job on Monday Colin! Thanks for sharing your story with us.

    Comment by Wendy Boulier Farrell — September 10, 2016 @ 11:45 am

  6. Colin is amazing! He is an inspiration to so many and I believe he will chart his own course. I love Dr Gajjar and think he truly loves the kids. Colin and your entire family are in my prayers!

    Comment by Jeanie Preston — September 10, 2016 @ 6:01 pm

  7. I am so proud to be family to all of you.

    Comment by Mark Hayward — September 10, 2016 @ 6:02 pm

  8. Yay! We are so excited to read about and view pictures of Colin and his many adventures. His beautiful spirit, amazing family, and supportive community never fail to make us smile! I think the bus he’s driving is the Knight Bus from Harry Potter. Obstacles just jump out of its way!

    Comment by Ashley Erickson — September 10, 2016 @ 7:18 pm

  9. Today our family read Colin’s updates, and we are moved by Colin’s story and recent adventures! Elliott (12), Roxy (8) and Reena (8) learned about brain cancer, and Make a Wish Foundation and St. Jude’s. We are making a donation to to St. Jude’s in Colin’s name right after we finish this post. Sorry we could not be there for the birthday Hello Kitty celebration. We miss you, old neighbors! Ian, it’s been almost a year since we hung out in Tops at Produce. 🙂 We are here with you. Much love, Sharon & Mark (The Nelson Bunch)

    Comment by Sharon Nelson — September 11, 2016 @ 8:02 am

  10. Go Colin Go!!! ❤️ Give Aidan a high five from me (he was never a “hugger” in kindergarten lol). Lots of hugs and love to all of you!!

    Comment by Julue — September 11, 2016 @ 8:48 am

  11. We love you all so much. We miss you all,and hope to see you soon. Colin can ride the quad until it runs out of gas 🙂
    You are an amazing little man Colin. Hugs to you and Aidan, mom and dad. Maje sure you get a deputy badge, you deserve it.

    Comment by Uncle Steve & Aunt Polly — September 11, 2016 @ 1:21 pm

  12. Dear Tamiko et al,
    Again, Colin amazes! I am glad you are cherishing and living to the full every day. You, all of you, are in my prayers. Enjoy FL, enjoy the hot tub….Love, Diana

    Comment by Diana — September 11, 2016 @ 10:48 pm

  13. Sending all of our love to the amazing Officer Colin and his wonderful family!
    Love,
    The Taylors

    Comment by BTaylor — September 14, 2016 @ 9:17 pm

  14. Wow! I have no doubt it is Colin’s remarkable spirit and his remarkable family that have taken him-and all of you- so far. We love you all so much! Congratulations to Colin for his new job:-) Again… We love you all!
    – Gabi

    Comment by Gabriele — September 16, 2016 @ 2:27 am

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