Life in the hotel is not quite what I was expecting because Izzy is still getting started with life after transplant. She isn’t allowed out in public places yet so we are confined once again. At least at the hospital I had a variety of people to interact with throughout the day but not here. It isn’t that her counts are low, it’s just that her immune system has been completely reset. Her body has no memory of simple viruses that ours have learned to fight. In a few months restrictions will slowly be lifted and eventually she will need to be completely revaccinated. Until then we will remain ‘in hiding.’
Since she has shed her old skin and fingernails from the intense chemo that were administered the ones she has now are brand new, just like the little sprouts of eyebrows and lashes that are coming in. To say she is a ‘new creation is more than just a beautiful metaphor. I, however, feel like a very old, very tired one. I do have a new perception of reality. One that has been molded through tears of pain and alienation. I have a new sense of self, whether I like all of it or not. One that has risen up through the crumbling around it. I have new fears and new dreams, most of which I seldom thought about before but now would nearly give my life for.
Back in the Fall when Izzy was over on the Oncology side and was actually allowed out of her room, we used to see a little boy who I’ll call John. Izzy would always ride her little pink school bus and he would ride his John Deer tractor up and down the halls, their IV poles never far behind. John went over to transplant at the beginning of December and was getting discharged shortly after Izzy got her cells. His room was just across from ours and on the day of his discharge he caught me in the hall as I walked down to get some water.
“Hey Lady!,” I heard from behind. I turned around to see five year old John standing in his doorway, door propped open with one hand and the other hand on his hip. He stood wearing only a white t-shirt, socks and a pull-up. (Most young kids regress back to pull ups during treatment because of the large volume of fluids hey receive). I smiled at his boldness, knowing he wasn’t allowed to have his door open. “Hey there, John.”
“I’m going over to RMH (Ronald McDonald House) today. Mom’s over there taking some of my stuff right now,” he said, so excited he wasn’t really breathing between sentences.
“That’s wonderful. You look like you’re doing great,” I told him, thrilled to see him so happy.
“Ya, Jesus healed me. How’s your little girl doing?”
I couldn’t believe he had said it so plainly. It was so pure, so beautiful. “She just got her cells,” I told him, “so she isn’t feeling quite as good as you just but she’s alright.”
“That’s okay, Jesus is going to heal her too.” When he said it I got chills. Then he continued on to other important things. “Did you know we have an isolation room over at RMH? We can even have food in it?”
We talked for another minute or two before a nurse came along and reminded him about the ‘germies’ that were in the hall. He didn’t care, he instantly directed his RMH excitement towards her.
“Bye, John,” I said, laughing.
“Bye, Lady,” he replied, shamelessly not knowing my name once again.
John, passed away last Monday two days before our discharge. He had been doing well and then relapsed just the week before. It was hard and fast and then it was over. The doctors and nurses up there deal with the death of children everyday. The rest of us do not. As I was coming up from the pharmacy that afternoon I saw his parents from afar. They were leaving the hospital alone. They were leaving for the last time. For every child that is fighting cancer there is a parent who fears that someday that will be them. We may have hope that get us through the day but it is glimpses of that fear that wakes us up in the morning and tuck us in at night.
Perhaps you are thinking, “But things are going so well.” That is true. But even at this point in therapy 50% of neuroblastoma patients still relapse. That’s why we continue on with so much more treatment. The cancer may be gone, but we cannot stop petitioning the gates of heaven. The battle continues, we are just playing offense now. That means when I pray for her now I don’t just ask for any invisible cancer cells to flee, no, I DECLARE LIFE over her and ask God to fill her with His Presence in such a powerful way that there is no room for cancer there ever again. I ask Him to reclaim his territory.
Last week I also prayed a lot for John’s mom. It was not his dad or his siblings but his mother whose heart I could not get off my own. I was overwhelmed with burden for her and I just prayed that she would be able to reconcile this nonsense. I prayed that she could feel the embrace of the Father without having to believe that He would ever want a child, her child, to die.
Like so many of the other children I’ve met along this journey I will never forget John. That last conversation I had with him will forever echo in my mind pummeling questions at me that can never be answered. “Jesus healed me,” he said. “Jesus is going to heal your little girl, too.”