I had no idea that James was sick back in March 2007. He was in the third grade and had had a rough winter, but he also has autism and cannot always express himself very well. Sometimes, a little distance is needed to see a problem. My parents had been out of town skiing for three weeks and when they returned, my mom thought that James looked pale and that I should take him to the doctor. I brushed it off, but did ask a friend who was a physician’s assistant to come over and check him out. A quick exam showed nothing wrong, but my mother kept insisting. Thank goodness! Lesson learned: Always Listen to Your Mother!
I took James to the doctor the morning of March 19, he had bloodwork that afternoon, and I got a call from his doctor at 10 pm that night telling me to take him to the hospital. Much of that evening is now a blur, but I do remember greatly appreciating his pediatrician, Dr. Mary Stahl-Levick, meeting us there and his new oncologist, Dr. Lesley Simpson, being several months pregnant. I also recall none of us being able to figure out the room’s dvd player or vcr, but James knowing how to make it work. James stayed in the hospital for about 2 and 1/2 weeks initially and when he finally returned to school, he just walked into his classroom as if he had left it moments before. I cried.
We were told from the start that James had the “good” type of leukemia (acute lymphoblastic) and that he would get better. They even gave us an end date: May 23, 2010. Never did I doubt the prognosis and James got through the 38 months, 30+ rounds of chemotherapy/steroids, 22 spinal taps, 5 blood transfusions, 4 bone marrow aspirates, 3 hospitalizations, 2 port surgeries, and countless pokes as a surprising great patient. He has always been a good pill-taker, which came in handy, when he had over a dozen to take some days.
About a year into his treatment, we did a “Dream Come True” trip, which was amazing. When the organizers came over to talk to James about what he’d like to do, he told them he wanted to “go to Wegman’s,” the grocery store within walking distance from our house. I encouraged him to dream bigger, and we went to Florida. We stayed at Give Kids the World, a wonderful place that I can’t even think about without tearing up, and visited the Disney parks, Universal, and Sea World. I always wanted to go back and volunteer at Give Kids the World, and in 2014, we did. I’m not sure our “help” was all that helpful, but James and I gave away Halloween candy at the weekly trick-or-treat party, while his younger brother Daniel and our friend Charlotte handed out towels at the pool.
In 2009, James and his twin Tom (who also has autism) took their first ski lesson at Blue Mountain and they started with Special Olympics shortly thereafter. Tom stopped after a couple of years, but James has participated ever since. He loves making “pizza” and “french fries” and using his poles. He has graduated from the beginner hill and can ski all of the green slopes and some blues. Hopefully, he’ll compete in the races next season. I hope to bring both boys to Blue for an autism clinic with the Learning Center staff sometime in the future. This year, we ran out of winter before it could happen!
James (left) and Tom (right) with their fabulous coaches, Darryl Fritzinger and Bob Malenovski, in 2009. (right) James with his mom in 2015.
James returns to one of his favorite places, the oncology outpatient clinic, for an annual check-up later this month. Although we still recognize a lot of the staff, there are several new faces that we don’t know, since we’re not there very often any more. We are so grateful for all of their help and support over the years, for truly saving James’ life!
Many thanks for reading! If you have any messages for James, please feel free to "like" or leave a comment below.
Sheri Miltenberger, May 2016
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Welcome! This site was originally intended to focus on skiing and snowboarding, but I've included marathons and some family adventures as well. Thanks for visiting.