After a week long stay in the hospital to monitor and record his seizures, we learned some valuable information. The subclinical seizures (those that are recorded on EEG but don't transpire into visible seizures) are coming hundreds of times a day. His poor brain is under attack even when we can't see it. Initially, those seizures were all being recorded from the right side of his brain, where we had already put him under the knife for more than 16 hours total, just a year ago, to remove massive chunks of his frontal and temporal lobes. The seizures were coming from an area directly behind where the cutting had stopped. Very frustrating. Wednesday he had a typical "visible" seizure, I pushed the little button. Then he stopped. He never stops at one. Something was not right with that seizure, but the doctor was thrilled and announced to Joshua "You had a perfect seizure. It matches the subclinical ones perfectly from the same spot on the right side of his brain." Then came Thursday. Joshua performed beautifully, with seizures coming one right after another. It was awful. But, God was showing the way. As he always seems to do when we need him the most. As hard as it was to watch him seize, and as hard as it was to stop them, even after 8mg of IV ativan, it gave us the info that was missing.
Joshua is seizing from both sides of his brain. The worse seizures, the ones we need to go away forever, are on the left. Without removing more brain from both sides, we will not succeed in suppressing his seizures. Deal or No Deal. The doctor was crushed. But, he wasn't willing to concede defeat. We are. It's a No Deal.
Joshua has survived a brain tumor, a 15 hour surgery to remove most of the tumor. Lived in the hospital for 7 months undergoing grueling chemotherapy followed by a stem cell transplant. Endured 31 rounds of high dose radiation to his 3 year old brain. Withstood infection after infection due to a failed immune system as a result of the chemotherapy and had to start IVIG infusions. At 9 years old, his seizures became our enemy of all enemies and they came, unrelenting, untreatable. We began the IVIG infusions again in a desperate attempt to give him more than 20 minutes of seizure free time. It worked, on all the types except the one that will eventually kill him. The drop seizures that cause him to drop straight backwards into anything near him. The ones that have resulted large holes in his head and the need for stitches. The ones that require him to wear the stigmatizing, ugly helmet. The ones that force us to never let him walk alone or go to the bathroom independently, ever. The ones that if we don't intervene with heavy duty rescue meds, he will go into a coma. We cured him of a brain tumor, but have so damaged his brain. . . But, at the time, it was a Deal or No Deal situation. Would we have changed anything if we knew he was going to become severely developmentally challenged, have terrible seizures, become severely hearing impaired, go into puberty at only 4 years old, fight terrible infections due to a lousy immune system and he'd have another 16 hour brain surgery to try and stop the seizures only to fail monumentally?
Yes. We would have. We wish we had more options, but this is still the treatment of choice for kids with this type of tumor. Medicine is infinitely more advanced than it was 15 years ago, and yet it's woefully inadequate as well.
So, we sit, we play, we hold him as he seizes and laugh when Joshua presents a Deal or No Deal situation to us. He has presented them to us his whole life and isn't even aware of it. But, he's happy and that's all that matters to us.