For some kids, nothing is routine

Going off to college is a familiar routine every year for many students. However, I think it is always a very special occurrence for children who battled cancer and blood disorders and one whose education has included learning about white cells and red cells – their own, in a hospital and not a classroom. Monday, August 30 was a red-letter day for a dear friend of the MACC Fund since it meant heading off to college after attending college near his home for the first two years. The week started in fine fashion and progressed well despite unseasonably warm temperatures.

The first day of class on Thursday even provided a bonus with a dismissal after only 10 minutes. When he texted me about his early exit from the classroom, I inquired whether this meant he got some money back. He didn’t seem to care, but he just enjoyed his unexpected gift of time. When you think about it, for a college student who has endured the roller coaster ride of cancer since he was in seventh grade, the gift of time is a very special gift indeed. Following classes he traveled 75 minutes south for a long weekend at home which included a standing physical therapy appointment. For kids battling cancer and blood disorders, medical-related appointments seem to become almost second nature. Like many kids, our friend has grown accustomed to balancing schoolwork, extracurricular, jobs and family while adding in visits at the MACC Fund Center for Cancer and Blood Disorders at Children’s Hospital of Wisconsin or other medical appointments.

The first week away at school went well until it came to a grinding halt about 5 PM on Friday when he told his mom that he had double vision after she returned from work, anxious to see her firstborn after his first big week away at college. With thoughts racing and her heart pounding, she called the medical professionals who suggested a trip to Children’s Hospital Emergency Department. Their car could pretty much drive itself after taking this route for nearly 8 years. His mom asked the obligatory “did anything happen” to explain the double vision. She learned that he had bumped his head on a bunk bed in his dorm room. Could that be the reason for the double vision? We can hope. Crazy at is sounds, humor sometimes helps in moments of stress. A beautiful double rainbow en route to the Hospital provided a bit of humor since he commented that it gave him four rainbows.

After a seemingly endless circling of the parking structure, they finally arrived in the Emergency Room. They knew the drill and recognized some of the staff. Eight years of visits lead to familiar sights, even in an ER. Once they landed in the ER, lingering thoughts of ‘should we tell dad who was at work and his brother who was finishing Cross Country practice.’ After all, it was probably no big thing, just a bump on the head.

Hours passed and the results of some tests brought a return of the fears which surfaced hours earlier. Something showed up on the tests which caused the doctor to return with a concerned look and the fateful words “I’m sorry…” It turns out he had a brain bleed. How could that happen? What does that mean? It might have been the result of cranial radiation or it might just be bad luck. He certainly knows lots about that. Lots of kids like him do. As his mom said, “Crazy, isn’t it, when we celebrate a brain bleed in a 20-year-old because that would be better than a tumor or relapse causing the double vision.” His hope for a late night ride back home ended quickly and his only ride was to the Hospital’s Intensive Care Unit. He could not have been in a better place, but it was the last place he wanted to be.

Saturday dawned and the night would end in the Hospital’s Neurological Unit which was a welcome change in venue. Not surprisingly, his longtime friend and one of the great pediatric oncologists, Dr. Jim Casper, stopped in and so did a very special MACC Fund board member whose care for the children is not limited to board meetings and events. He also met Dr. Jogal who was featured in the 2010 Spring edition of the MACC Fund Today as well as Dr. Lew. He liked both of them and so did his parents. Over the years he has learned that caregivers old and new share a common goal in helping the children and 20-year-olds like him. There was talk of a lumbar puncture on Sunday. This spinal tap would help show whether there was any incidence of cancer’s return. He learned that he might even get to go home Sunday after the procedure. And home he did go not sure of the final results, but always with his trademark optimism. That optimism is more common than you might think among kids who have battled serious illnesses. The hope was that the double vision would correct itself over time. Until then, a patch over an eye might help, although knowing him; he probably won’t wear it to classes this week when he is back at college since he doesn’t like to attract attention.

And so it goes for this friend of the MACC Fund, now almost 21-years-old. He is a cancer survivor. He will never forget his first weekend home from college. Neither will his family nor his many friends, including the MACC Fund. It certainly wasn’t routine. Oftentimes after battling cancer, routine is not a word that ever becomes, well, routine. And concern is often there. I remember a mom of a child battling leukemia telling me when I started this career 28 years ago that “you don’t go a day, oftentimes less than an hour, when you don’t think about it. It is always with you.” Her child is 35 now, and I know that little has changed in that mom’s view.

Thanks to friends of the MACC Fund like you though, there is one thing that is routine. The children and their families can count on your caring routine through your Gift of Hope– your wonderful routine of helping the MACC Fund help kids. For our friend, let’s hope that week two ends better than week one and that he can get into the college routine.

~John Cary, Executive Director


One Response

  1. Great article. Thank you for sharing the story. This mother’s child is in my thoughts and prayers for a swift recovery (again). Puts things into perspective for those of us moms that are routine challenged with normally healthy children.
    We might not realize how truly easy we have it.

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