This past weekend took our family on a wild ride. Karen and I knew that Jack now has an "abnormal mass" in the frontal lobe of his brain, but we were going to have to wait a full 4 days before we could begin to speak to a specialist regarding what was showing up on the CT SCAN. In the meantime, Jack and Paul were continuing to behave like the same old wild boys we always knew, so we decided to keep things normal in our family and go to our weekly soccer game. While at the game, our pediatricians office called Karen to confirm that our follow up MRI test from Friday confirmed the negative image that showed up on the CT SCAN. Jack ran all over the field and show absolutely no signs that anything could possibly be wrong with him. That night Jack helped Mommy in kitchen chop vegetable and make some stew. Everything felt so good, there has to be some kind of mistake. That night the boys went next door and had a sleep-over with Harper at the Moloney's house. Karen and I had the house to ourselves but we tossed and turned all evening. Sleep is not easy.
The next morning I receive a phone calling me that my grandmother, Ursula McEvoy, passed away in the previous evening. She had had a massive stroke early in the week and her body had apparently declined rapidly. I feel so bad that I couldn't be near her during this final week, but my mind is completely wrapped up around Jack.
The next morning the boys came back to our house with Harper and had a huge breakfast of scrambled eggs, spaghetti-o's , and KIX. Jack had a huge appetite. It was a lazy Sunday and Jack went to the backyard to play by himself. He was skateboarding perfectly up and down the driveway. He then started climbing along the cinderblock wall that is between ours and the Moloney house. His balance could not have been more perfect. Later that afternoon Karen and I decided to split up with the boys and do some afternoon errands. Jack wanted to go to the beach with Karen and I was going to take Paul to Jerry's Deli for lunch. About an hour after leaving the house I get a call from Karen saying the Jack was having another one of his "SPACE-OUT" seizures. She wanted to take him to the emergency room and start moving on the fast track to find out what EXACTLY going on with Jack's brain.
Paul and I turned around and went home to pick up some warm clothes and blanky for Jack and Mommy and then we went to meet them at Cedar's in the emergency room. By the time we arrived at the hospital Jack was looking more alert, but Karen was moving forward with Neuro-Pediatrician on duty. About 4 hours after arriving at the hospital, it was determined that Jack has a lesion/tumor on his brain and that his going to be prepped for surgery the following morning. FUCK!!!!!!!!! Oh Jesus Fucking Christ, what the hell is going on?!?!? Paul and I left the Hospital and I dropped him off at Harper's house for another sleep over. I packed an over-night bag and headed back the hospital. It feels like I'm just a passenger on a wild bus ride through hell. I have no control about what is happening to my son. I'm just holding on, following the doctor's lead. Karen and I have agreed to forgo getting a second opinion from outside doctors. We feel the urgency from Cedar's to move forward quickly.
The surgeon who will be operating on Jack is Moise Danielpour. Karen and I have to trust that he knows what best and we are ready to move forward. Jack, of course, is loving his time at the hospital. They roll him around the halls in his bed. He gets to ride up and down in elevators in his bed and his the constant center of attention. His appetite is still large and his staying awake late watching TV in his bed.
He finally falls asleep around 10:30pm. Karen and I completely wiped out, but it is very difficult to sleep. We are so worried. TONIGHT HAS NOW BECOME THE WORST NIGHT OF OUR LIVES. Our conversations vacillate between the completely optimistic and the utterly horrible. We're just going nuts with exhaustion, worry and grief. Our little angel is lying asleep in the gurney and we're huddled on the fold out cot, preparing ourselves for surgery the next morning.
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