(more than 7 years from diagnosis)

We have enjoyed the glory days since our last update….more than a year ago. Matt has indeed seen the Lion King on Broadway (in Chicago) this past spring as was mentioned as one of his big dreams in an earlier update. The tooth fairy happened to be there as well, which was a fortunate thing for Matt. She stocked up on Lion King Broadway beanie babies so he can continue to tell the heroic story of Simba, Mufasa, and Scar.

Matt was in first grade during the last update and is now in 3rd grade. He likes school very much and while he is in "inclusion", his academics are provided in a pull-out model served by the special education teacher and teacher aides. The rest of the day he enjoys the ‘goings on’ of what 3rd graders do, often with the help of a peer or teacher’s aid. He has friends and classroom teachers who really enjoy him and see his talents and gifts that strengthen the culture of the classroom. His academic performance continues to be about 2 years behind grade level and some days we wonder if that gap is widening. He still has rehabilitative therapy for speech, physical, and occupational issues at school and as an outpatient.

We made a significant adjustment in our life this past summer by moving to a ranch home. The ranch design afforded us a bigger home; but more importantly, an accessible home for Matt. He walks steadily about our house, usually without his cane. He uses his cane for school, outdoors, etc, but his balance has improved significantly. The wheelchair is still handy for long Cub Scout outings and the like.

Matt’s passions continue to be the fine arts, writing and telling stories, Disney history and cinematography, and playing and printing from computer games. (He goes through a lot of color cartridges!). He has taken adapted golf lessons and participated in drama camps through our park district and church programs. Matt had wanted to take violin lessons before the production of The King and I, and since the desire never ceased, we arranged for lessons with a private instructor. He has been playing the violin for about a year now and is still learning Twinkle, Twinkle Little Star, but the instructor says he sees weekly progress and is impressed with his desire and effort.

It has been more than 7 years since Matt’s diagnosis and he has been very well these past 2 years. He has an occasional episode of croup that we treat with a burst of Prednisone by the order of his pulmonologist. He has annual MRIs and sees a medical team at the University of Wisconsin – Madison for follow-up and late-effects. One late effect we may be soon treating is a growth deficiency. He has fallen off of his growth chart over the past 2 years and the endocrinologist is looking at that issue. Growth hormones are small potatoes by comparison to other problems facing many children that have survived cancer, according to other parents on pediatric oncology list-serves (ped-onc and ped-onc-survivors).

Otherwise, Matt is thriving and living a full life. We have been blessed by the gift that he is to us. Some days, cancer seems like forever-ago. Other days, it hits us broadside but we will be eternally grateful to our family, friends, relatives, caregivers, doctors, nurses, therapists, neighbors, pharmacists, teachers, our priest, etc. etc. for being in his court with undying support and encouragement. We look forward to more healthy updates!!!