Where do I begin? The details are all in front of me; done with chemo, scans are clean and your port has been removed. Based on how you responded to treatment, the doctors don’t expect this to ever come back again. You’ll still have to go for scans every three months for a year and then a little less for five years but that’s part of the deal.
So this nightmare that began four months ago but feels like a year is behind you. Still, a part of me wants to try and make sense of what happened, to transfer thoughts and feelings into words. But we both know that’s not possible. Words like that don’t exist for people like us.
I can’t explain what we felt the day we found out that the simple surgery you had to remove what we all thought was a hyperactive lymph node, was much more serious. You were still sedated as we drove home in silence. Your dad carried you into the house, your grandmother went with him to get your sister and I sat in the car with your mom. For as long as I have breath, Matthew, I’ll never forget the sound of pain that came from somewhere inside her. All these months later and I can still hear it.
A few days later your parents told you that you had (Batman) Jokers in your body and they had to be removed. I can still see you coming down the stairs and walking toward us with your shoulders slumped saying, “Tomorrow’s not going to be a good day, I have to go to the hospital in New York because I have Jokers in my body.” Then you went to sit with your sister and watch television. We couldn’t help but look at you and feel guilty for not being able to tell you everything. As you sat there and laughed at the TV, you had no idea there would be radioactive liquid to drink the next day, more anesthesia, a lumbar puncture, an IV line and a series of PET and CT scans. You had no idea you were going to be thrown into a world you couldn’t possibly understand. In your mind you were healthy, had a motor that never turned off, were enjoying the summer and had just celebrated your seventh birthday the month before. We were at the beach a few days earlier and you had plans for us to go back the following week. We never did but we will soon.
I know you must have been confused, Matthew. The truth is, we all were. Like you, we didn’t understand how this could happen. The thing is, adults eventually find answers to the questions they ask; but children ask questions that adults have no answers for. And so it was with you. The question of why had no real answer, at least not one that made any sense to you. So the first several weeks and beyond were especially rough for everyone. You see, there is no segue into this world of chemo. Your parents sign release forms that clearly explain the risks and side effects, both short and long-term. It’s not pretty but there are no choices. Time is not a friend. It owns you and you have to find a way to buy it back. You were given a schedule and a dozen different kinds of pills. Sometimes you had to take as many as twenty a day. Some tasted really horrible and no matter how small it was crushed or how much ice cream or pudding you put around it, it was hard to disguise. The pills were constant, as was the negotiation with you to swallow them.
So you take a happy and energetic seven-year old, pull him out of his world, tell him something is wrong with him even though he feels fine, stick him with needles, force disgusting mood altering pills down his throat, sew a port in his chest, put him in the car at 5:30 in the morning for a four to five-hour round trip ride to the hospital, spend anywhere from 8-10 hours there, hook him up to drip lines that make him feel even worse, cause him to have sores in his mouth and a fever, then do it all over again the next day. What would any seven-year old do? Pretty much what any adult would do. They rebel.
You rebelled until you came to an understanding. Until those walls became your life. It took time and lots of tears, but you adjusted your old life to fit your new one. Not an easy thing for a seven-year old to do. By the time you were done, you took needles without complaint or support, walked into your treatments with an attitude, spoke your mind and asked your own questions. You came to accept what you fought and made us laugh in the most difficult moments.
When a doctor, in the middle of your treatment came into your room and asked if there was anything they can do for you, you would reply, “Yeah, get me out of this place.”
When you had to stay in the hospital for a few days and your mouth was swollen and filled with sores and you couldn’t eat and were hooked up to morphine and antibiotics and in obvious pain; the doctor would come in and ask you to rate the pain on a scale of one to ten. You would always say zero because you thought they’d let you go home.
You would never admit to pain or feeling tired or weak even when we knew your blood counts were close to nothing, even when the sores in your mouth made the doctors cringe. You pushed yourself to do things when you had no business being upright. When you were in between treatments and found a little more energy, you’d always want to go outside and play soccer or baseball or basketball. It was hard to watch you labor through those moments, to see you out of breath, to listen to you ask for a rest. But that was your way of fighting, of letting this disease know that it slowed you down but it hasn’t taken you out. So I wasn’t surprised. That’s just who you are. You don’t back down. You fight like a kid.
But you know, no one goes through this alone and you were no exception. I really don’t know what to say about your parents. Aside from watching their child go through this, they had to learn a different language, one that included medicines, tests, protocols, surgeries and scheduling. There was no class to take, no instructional video to watch, It was on the job training and they were relentless with you. When you pushed back, they pushed back harder. When you fought, they fought harder. When you cried, they held you.
They stayed together, asked all the right questions, developed relationships and never left your side. Not for a moment. Not once. They were amazing.
Your sister who is four years old was confused at first but eventually understood you were sick and made it a point of taking care and defending you whenever you were home with her. She took care of you in ways only a four-year old can and you understood in ways only a seven-year old could.
You know, I’ve always believed there comes a moment in any relationship when you find out all you need to know about someone. People will show you who they are without a word. That’s what happened here, Matthew. When people found out you were sick, they responded. People you know and some you’ve never met. They responded with prayers, and food and gifts for you and your sister. They didn’t ask if there was anything they could do, they just did what they felt needed to be done and made this difficult time more bearable. They called and checked in, letting us know they were still praying, asking how you were doing. So many people took time out of their lives to let us know they cared about you. We will never forget their kindnesses or their concern for you and our family. You can’t repay those gifts of love, you just count them as blessings and file them away in your heart.
When expressing our thanks, how can we possibly forget the amazing doctors and nurses at Memorial Sloane Kettering in New York. They deal with children who face uncertain futures every day. Quite honestly, I don’t know how they do it but I thank God there are people like that in this world and that they were part of your life when you needed them most.
It’s safe to say that we’ve all been changed by this. None of us will ever be who we were before. How can we? We’ve seen and experienced too much. We’ve become vulnerable and more cautious about tomorrow. It’s hard to explain, just as it’s hard for you to put into words how this experience has changed you. But it has. I can see it. You see things differently and you’re more vocal about expressing what you see. You never had much of a filter but you have less of one now. In some ways you’re much more mature, not in a boring kind of way, but in a way someone who knows you has to see to understand. I think, in your own way, you see life differently. But then you’ve seen and experienced things many adults never have. You’ve grown up quicker than most seven-year olds and you’ve become even more sensitive to the feelings of others. Thankfully you’re still inappropriate, which I appreciate and you think I’m the same way, which you appreciate. So it’s a mutual admiration society of two in that respect. We know it makes people around us crazy but that’s part of the fun, right? So let’s agree never to change in that respect, regardless of how old we get.
But you’re still you. Your cousin Jake reminded us of that. He was coming to visit you one day during your treatments but hadn’t seen you since you began losing you hair and decided to have it buzzed. Your aunt prepared him before they walked in, telling him you would look differently and may not be as active as he remembers you being just a couple of weeks earlier. Your cousin listened to what his mom had to say and then asked the only question that meant anything to him. “But he’s still Matthew, right?”
Yes, Jake, he’s still Matthew.
God Bless you, Buddy.