One year ago this week, we were traveling all over the Chicagoland area as we were referred to specialists at Glenview Hospital, Childrens and so on. Scans, consults, tests, you name it. No diagnosis, just conjecture based on the initial MRI results, all of which was very bad. Finally spending roughly 5 or 6 straight days at Luries ending up in a brain biopsy to see what we were facing. A year later, in a quiet moment looking back. I cant explain the fear, the anxiety, the utter despair of finding out your child has cancer. Its a very dark place, but what makes it the hardest is the courageous face you put up for your cancer stricken child and the other kids and your spouse. Researching for hours on end, reaching out to other physicians, looking at statistics. No matter how positive you are, your soul goes to the worst case scenario at some point. Its a human defense mechanism to start preparing for the possibility you will bury your baby. It lurks, and stalks you at times and hits you like a wall of emotion. Fight it, push it aside and process it later. No time, have to figure this out, have to protect, have to find a way. Is there a way? Is it something that will inevitably steal her? What the hell is going on here? So the diagnosis came after she recovered from the drill hole into her skull, the scapel that cut around her ear and peeled it back only to be glued back on to heal. Then the assignment of a lifelong cancer fighting brilliant doctor and her team to get the treatment protocol. The rest is a work in progress, over 30 spinal taps, 40+ in hospital chemo treatments(not counting all the at home chemo), 16 radiation treatments,blood transfusions, being port accessed due to fungal infection for 4 straight months, 8 late night ER trips, and 4 weeks of inpatient stays amongst others. She has squeezed a lot into the last 52 weeks. We have experienced every emotion, amplified versions of those emotions. This disease is a monster, it can be relentless, and thus the treatment is set to match it. It kills all shapes and sizes. Doesnt discriminate based on socioeconomic status or intelligence. Steve Jobs, Apple mogul possessed an unreal fortune and one of the more intelligent people ever... pancreatic cancer took him. Famous and well publicized, Stuart Scott of ESPN. It doesnt matter, cancer can be a ghost until its too late. On a closer and more personal note, John Wayne, great athlete, father, and friend was taken last week at age 40, prayers out to his family. Way, way too young to go. So while Madis fight is far from over and her treatments continue for at least another 16 months, she has taken 2 very large steps in the right direction this week. One out of her control, hair is sprouting :)... If all goes well this will be the hair that stays with her until she dies after a long and productive life. The other, in her control. She made a return the competitive sports. She decided to try volleyball for a local club team and had her first game back tonight. She is still weak and not what she was at one point, but she played and her team came out on top. Fun moment to see her back out on a court reflecting back to the dreadful, cold winter last year and where we have come from. Like I said, fight is far from over but her spirit continues to dominate this disease. To her, it seems like it just doesnt matter. She has cancer but has decided that she will continue to fight in her own way, and part of that is ignoring the monster. Seems to be working and she has made this situation as easy as possible on her family. So many warriors, so many win their battle even though it takes their physical being.... You win by saying f**k you cancer. You are nothing and when my body fails, you fail too. But my soul and my spirit go on through everyone I have touched. I added a picture of Madi on the court, look closely at the little fuzz growing. Thanks for all the continuing thoughts and prayers. Please add all those battling this and other illness to your
Posted on: Tue, 20 Jan 2015 15:11:05 +0000
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