The begining of the story…….my baby has brain cancer #1


IMAG0769 IMAG0381 IMAG0386 IMAG0360 IMAG0525So, its been a few years. We had a coupla babies and life took over. Hope is 5 1/2 and John John is almost 4. We have a need to disseminate information in a manner that does not require many long phone conversations. We reserve phone calls for when we need to talk to a friend about the stare of our mind and heart. Therapy really.

So, it all started (although I didn’t know it at the time) when John John was very small. He is my 4th child. Steves 5th. Not a new concept to each other of us, a sweet little baby boy. *sigh* I spent many months wondering if I was out of practice as a mother or if this was the most high strung baby I’d had to date. I am not a high strung mother by any stretch of the imagination. After all, kids grow as they will, meet mile stones when they do, and you should just relax and enjoy it. 🙂 I suspected sensory integration issues, maybe Adhd, perhaps he would need a firmer hand as time passed than the average child. He was definately needier in the category of comfort. So, baby stayed on my hip long after he could walk. And, that was fine with me. I had no idea a bomb was pressing on his tiny brain right where our sensory functions are controlled. That year by year it was slowly growing, pressing the ease of childhood out of his life, creating a difficult coping environment in his world that only he knew existed.

As i look back through the photos and videos i can see the subtle changes over time. He was not born only using his left side, that was a slow deterioation between 18 months and 3 1/2 years old. What we now know is that as the tumor grew it was affecting his brains ability to control his movement. The tumor was located in the left side of his brain. It grew out of the glial cells of the midline of his brain. Eventually it grew so big that it shifted the midline of his brain all the way over to right above his right eye. The brain was so smashed that the middle of his brain sat above his right eye. yeah, big right?

Over time he had decidely become a lefty. The possibilities are fantastic, right? Hes going to bat lefty, he will be able to throw all those little league kids for a loop in right field!!! Maybe he was ambidextrious like i was. Lefties are by far more creative, right? He could sit next to me at the table and eat, our elbows would never bump! One of the benefits of being a mother is the joy of reveling over every detail of your own personal Gift from God!

Over time we battled with a willfull child. Many times I said, hes a boy. Boys are just *different*. He was just a strong personality. My hero mom had 5 boys after all. It just takes more training.  I never realized my groanings about having a difficult personality were more than my short comings biting me in the butt as an adult. Aparently you can’t train away the effects of a brain tumor. Humility takes on many forms. One of those forms is having a wild screaming monkey child. I assured everyone, it wasn’t for lack of trying. Talk about an inferiority complex.

The drooling always baffled me. I blamed it on his 2 year molars long after they came fully in. Then there was the foot. It began to turn in on the right side in the winter of his 3rd year. Steve and I googled, as all modern parents do. We decided he needed a good pair of orthopedic shoes. Stride rite shoes are not cheap. They seemed to help for a while. We figured it was typical toddler intoeing. Then he began to fall. His ankle began buckling and his foot and coordination seemed to be getting worse. I made an appointment with the peditrician. I asked for a full physical.

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