Ayden’s Story

The South Lansing Kiwanis Club has in recent years made the KMF one of the top priorities in their budgets, often contributing beyond the goal set for it. However, it became personal just before Christmas 2013 when club President Hugh McNichol’s and club Secretary Peggy McNichol’s five year old grandson, Ayden, was flown from Lansing Sparrow Hospital to C.S. Mott Hospital in Ann Arbor.

Ayden had been complaining for several months of neck pains which caused him sometimes to cry and scream and his parents had many times been to the doctor and emergency room visits with him to address his pain. The doctors treated him for muscle spasms with no success. Finally, at an ER visit to Sparrow Hospital before Christmas, a CT scan was done—nothing initially detected. Three days later Ayden’s parents were asked to admit him to hospital so he could be sedated and an MRI done. The MRI showed a tumor which was wrapped around his brain stem and had caused fluid which normally flows up and down the spinal cord to be jammed up in his brain. With this diagnosis he was immediately flown to C.S. Mott Hospital to prepare for surgery.

There was no room in the helicopter for any family, so Mom, Dad and the rest had to drive from Lansing to Ann Arbor. Ayden arrived first and was immediately greeted by the wonderful people who are part of Child Life Services. By the time family arrived, they had him playing games (his favorite thing to do). Since then he has undergone 3 fourteen-plus hour surgeries (the first just before Christmas), with chemotherapy and radiation after that, along with surgeries to replace a shunt in his brain and insert a trach tube for breathing. Throughout all of these surgeries and procedures, Child Life was there to keep Ayden occupied and reasonably happy, and to help his older brother Shane (then 12) understand and start to deal with all that was happening to his little brother.

They brought him games and movies for time in isolation in his room. He was able to visit the game room to play video games with J.J. (his favorite Child Life video gamer – probably because Ayden was usually able to win!). After one of the surgeries to remove the tumor, Ayden was unable to speak. The Child Life folks brought him a chart with some simple signs and a book for Mom and Dad on teaching a child sign language. His first words in sign language were “Mom” and “Dad” immediately followed by “game room” … as in “I want to go to the game room”! Luckily, his speech returned in about 6 months.

So far the tumor and its removal have not seemed to interfere with normal life. He does have to have constant attention because of the trach tube, and regular MRIs to make sure that the tumor does not re-grow. Child Life continues to support Ayden and the rest of the family.

Hugh and Peggy have both commented on how the child life specialists have been so helpful for Ayden and for their family during this time. Hugh put it this way, “As Kiwanians we heard lots of stories about the work these people do. Having actually seen them in action, I think Peg and I both agree that what we have heard in the past amounts to faint praise compared to the actual experience. The family life staff we have seen have been phenomenal in their dealing with both the patients and any child visitors.”