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

August 11, 2009

About Colin

Filed under: — admin @ 8:32 pm

Colin Does Love Tractors!Colin is a vivacious, charismatic boy who is both loving and well loved. Leading up to his second birthday, he became more clumsy, tripping when he shouldn’t have been, and complaining frequently of headaches (by pointing at his head). His head also seemed to tilt to one side and, in retrospect, began eating with his left hand and generally favoring that side.

With the sneaking suspicion that something was wrong, we planned on bringing the issue up with his pediatrician at his upcoming well visit. However, we ended up at the doctor’s office on his second birthday, finding out that he had a double ear infection. This could explain the loss of balance at the time but left us still wondering about his behavior over time.

The following day, we returned to the office with a trivial complaint (a bug bite, it turns out, rather than the feared contusion!) because of the neurological concerns. The pediatrician, Dr. Golenbock, heard our concerns and sensed the parental intuition that kept sending us back to the doctor’s office and ordered a non-priority CT scan. His line of questioning helped us understand what sorts of symptoms represented a problem.

On Sunday morning, June 14, 2009, the day we planned to celebrate his birthday with his cousins, Colin couldn’t support his body with his legs and started arching his back, throwing his head back.

Alarmed, we headed straight to the emergency room in Danbury, CT, where the ER doctor, Dr. Michelin, ordered a CT scan. She  assured us that we would get an answer that day and suggested that we transfer to the children’s hospital in Westchester for a full neurological workup.

Unfortunately, the CT scan showed a mass in the posterior fossa region of the brain. Growing out of the fourth ventricle, wrapping around the cerebellum and much of the brain stem up to the pons and extending down the top of the spinal cord, it had backed up a large amount of fluid in his brain. The cerebellum controls balance and motor control, explaining much of Colin’s symptoms. Often, the symptoms in these cases are sporadic and appear to improve throughout the course of the day, as we had seen with Colin.

Colin was admitted into the Pediatric ICU (PICU) on Sunday and immediately saw one of the neurosurgeons who treated him there. The MRI the following day made clear the extent of the tumor, which was not fully evident in the CT scan.

The immediate concern was the pressure that caused Colin’s neurological symptoms, and it was also important to diagnose the type and nature of the tumor. Both were impossible to ascertain/confirm without biopsies. The surgeons were reluctant to speculate, as Colin’s case did not fit a common pattern familiar to the team in Westchester. The biopsy and subsequent pathology studies revealed that the tumor is a grade III anaplastic ependynoma, a relatively uncommon cancer that is often restricted to the posterior fossa region (essentially, in the lower back of the head) but in his case migrated much further.

There is some suggestion that the tumor is congenital and it may have become more aggressive only recently. However, this is still not clear. These sorts of tumors typically originate from cancerous stem cells, so it only takes a single errant cell after treatment to serve as the seed for new lesions.

Colin’s first surgery removed the section of tumor on the back side of the cerebellum, freeing up room for the fluid to flow and presumably relieving pressure. Another component of surgery was the installation of a drain that provided an external valve to alleviate pressure. Colin’s body adjusted to the pressure well and the surgeons removed the drain.

Colin’s second surgery was performed by Dr. Jeffrey Wisoff at NYU Medical Center, successfully removing 95 – 98% of the tumor. He reported the tumor remnant as a piece 5 mm x 5 mm x 2 mm. Although the immediately pre-op MRI showed evidence of metastasis in two places in the spine, a later post-op scan found the spine clear of disseminated disease.

The hydrocephalus proved too much for Colin’s system to manage, so Dr. Wisoff also installed a ventriculoperitoneal shunt (VP shunt) that has a valve behind his left ear and wends through his body, letting out into his stomach. The shunt has done it job well (and without complications!), greatly reducing the degree of hydrocephalus over time.

Colin suffered a fair amount of nerve damage as the result of the second surgery, leaving him unable to swallow, with facial paralysis, impairments to the right eye, and deafness in one ear. He received a gastronomy tube in New York to allow feeding. At St. Jude, they recommended that a tracheostomy would keep his lungs safe, given the paralysis of one vocal cord and other deficits that left him unable to swallow properly or protect his airway.

Colin received high-dose chemotherapy through a research trial  for children under three with certain brain tumors (SJYC07) at St. Jude Children’s Research Hospital in Memphis, TN. Chemo was not easy on Colin but it help make the residual tumor easier to remove. He had his third major neurosurgery in January, 2010 with Dr. Frederick Boop at LeBonheur Children’s Hospital, also in Memphis.

Dr. Boop removed all visible traces of the tumor but, due to the sensitivity of the area, was not able to search around to double-check. There remain areas that enhance on scans, and it is unclear whether this is scar tissue or residual tumor. Either way, Colin was able to move on to radiation, which would hopefully kill any remaining tumor cells and keep the cancer from returning.

Although other children on the protocol are currently getting proton therapy in Jacksonville, FL, Colin did not travel there due to his matrix of medical complications, including a fungal heart infection we discovered during chemo and a six-centimeter blood clot that developed in his brain after his last tumor resection. Instead, we stayed in Memphis for intensity modulated radiation therapy (IMRT), or standard photon therapy, and were very glad for it.

The last phase of treatment was a six-month course of oral chemotherapy that began in Memphis and that we finished at home in Danbury, CT. Colin returned home in June, 2010, and finished treatment at the beginning of October. He is now considered in remission and continues to return to St. Jude for regular check-ups to assess the status of his cancer and various side-effects.

Since then, Colin started special ed pre-K and, more recently, Head Start. He receives therapy at school and much needed interaction with other children. We anticipate that he will start in the mainstream kindergarten classroom next year with continued support of therapists and an aide in the classroom.

We permanently removed Colin’s trach in April, 2011, and closed the old trach site surgically in August. Immediately after this, he passed a swallow study and was given the green light to eat and drink again! This was the most exciting milestone for him and the whole family. The next step, literally, is for him to begin walking independently, and he is ready to walk on his own to see Santa.

Colin’s been a model patient, holding still for CT scans and rapid MRIs, tolerating an IV line and other indignities, and flirting shamelessly with the nurses. He has endured so much through the course of his treatment, yet his determination and strong sense of self have helped him persevere through this profound experience.

Colin’s condition has improved considerably, and he is now a chatty, loving four-year-old who still struggles with issues of sharing. The more he improves, the more we see his personality and appreciate his unique combination of a good nature, strong will, and adaptability. His sense of humor is fully intact, as is his ability to charm his many admirers. 

We appreciate everybody’s thoughts, wishes and prayers. Although attention naturally tends to focus on Colin, this has also been a challenging time for Aidan, who is sensitive and is very concerned about his brother.

The most updated information on Colin’s case is available through the posts on this site. We love to read comments, and you are welcome to contact us directly, though we warn you in advance that we are not very good at keeping up on individual correspondence. However, if you are a family in need of support or information about brain tumors, please do not hesitate to contact us. We plan on building out more information on resources on this site, but in the meantime, we are only an email away.

1 Comment »

  1. I thought of you all yesterday as Thanksgiving provided many reasons for me to be thankful. One reason was meeting Colin, you his parents and Aidan on the flight from San Francisco. What a wonderful family you are, giving Colin so many opportunities for happiness. And his happiness shows in his friendliness and ability to use his brain. He sure has a good brain!! Some of it may not work too well, but wow! the rest of it is really great! I love the way he enjoyed and succeeded at his video games.
    I feel so fortunate to have met you all. I’d have liked to talk more so I tried to find you at your gate for Ithaca but you must have stopped in the main terminal. I hope the rest of your travels went well.
    I wanted you to know how very special it was for me to meet you. And that I think of you all often.
    Barbara Stowe

    Comment by Barb Stowe — November 25, 2016 @ 7:40 pm

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