Sunday Aug 31, 2008 – Max was in bad way. You could tell by the way he looked. It occurred to us at some point, probably after speaking with Dr. Sholler at 7:30pm (his breathing had changed significantly, becoming audible and clearly labored, about 75 minutes before he died), that his kidneys had shut down the day before. He was drinking lot of fluids, but never peeing. This, in addition to his belly being distended from the size of his liver, was causing him great discomfort. Earlier in the week we had found out that the neuroblastoma had spread to his liver and it was growing so fast you could almost see it. From Monday to Friday it went from regular to pressing so hard on his organs that he had to get palliative radiation to relieve the pressure. I think it helped a little bit – it at least stopped the rapid growth through Saturday and Sunday.
As usual, Max was in an okay mood – considering the pain, discomfort, and morphine, which he controlled with a bolus button. He didn’t necessarily want to talk to anyone, but he let us sit and watch his programs with him, hold his hand, be at his beck and call. It was hot and humid (for us anyway) that late August. Max asked for his favorite – frozen lemonade which he ate voraciously. He smiled that pure, sweet, sweet smile of his. We, especially Andy, were there for whatever he needed. I don’t think Andy left his side for anything. We had made a bed on the couch for him so he would be comfy and still in the midst of the family action.
We had scheduled Nicky’s 3rd birthday party this day. I think it worked out well… the whole family came to see Max, not actually knowing he would pass that very night. His cousins came in and sat with him for a few minutes each. I’m sure it was stunning for the children to see him look the way he did. It was stunning enough for the adults. Andy brought Max outside for a little bit for the party, but he was not feeling good (he was super light sensitive at that point and didn’t even open his eyes), and went back to the couch.
I don’t remember much from the party to bedtime. There was a flurry of activity surrounding Max. His breathing at some point became wet sounding. I phoned Dr. Sholler and she instructed me to give him some of the emergency drugs we had from hospice, and told me “maybe 3-4 days.” He couldn’t get comfortable for anything when it was time to get to bed. He needed to sit up, he was floppy. So we decided to move him to our room and knew we’d be up all night. We propped him up on our bed with every extra pillow and I remember him adjusting his legs with his hands saying, “Why are my legs so heavy?” I phone my sister and asked her to come over to be with Hannah & Nicky during the night and the morning. We called hospice to have a nurse come and help us with Max and some meds.
Once we thought he was set-up in the bed, he had to use the toilet. It was a struggle to get him there. In hindsight, it’s obvious that his body was slowly shutting down, but at the time we were living moment to moment and doing what ever we had to. Andy supported Max under his arms like he had been doing for a couple of days while Max had to use the toilet. Max went fairly limp and heavy, and I could tell that something happened. On the way back to the bed – Andy was carrying Max – he was heavy as lead.
We laid Max on the bed, he was practically unresponsive. Andy & I were on opposite sides of the bed trying to help him, when he threw his head back, and his eyes rolled. We both called to him, “Max! Max!” His body jerked around a bit, and then he stared into the corner of the room like he saw something. It seemed like he was trying to talk, but no words would come and it was obvious that he wasn’t seeing us. We still called, “Max! Max!” And we may have realized at the same time that this was it. The tears started.
Max was dying right here in front of us.
Andy gained eye-contact with Max and through tears said, “Take Jesus’ hand Max.” And he closed his eyes, smiled and left us. 8:45pm.
We brought Hannah in to say her goodbyes. Kids are so profound. She said through her tears, “He didn’t even lose a tooth.” Nicky was already asleep and oblivious to the night’s event until the next morning.
My sister came a short while after and started making all the phone calls for us, as well as offering her calmness and prayers to our home. The hospice nurse came – we appreciate to this day the help she offered us that night. She helped us dress him in his favorite Clone Wars pants, his skull t-shirt that Tony Hawk liked, his skater beanie, and his flame high-top converse. He looked like Max again. All the swelling had left his face and body and he was beautiful again. Andy’s Dad and Aunt Joanne came by, and my mom and dad.
Then we went to bed with Max lying between us.
The small smile on his face stayed there until we laid his little body to rest.
It’s so hard when you finally submit to giving up hope that your child will be cured. That the coming days are numbered and you’d better get all you can out of them. It was like a weight being lifted – and yet only lifted to reveal the suffocation of the pain you have to endure from then on.
Melissa & Andy