There are so many wonderful moments that I could share, and I will, but I seem to do everything in life backwards, so it only seems natural to start at the end of the story and then over time, work my way back.
You see, there is so much goodness in pediatric cancer. The nurses, doctors, child life, foundations and even the food service workers and janitors go to extremes to make you forget that you are scared to your core and in a hospital filled with bed after bed and floor after floor of children. Every time I enter a children's hospital, I lose my breathe. It's a reality that so many of us are lucky enough to never have had to experience and even though I did, as a sister, it feels like a lifetime ago.
Today I am choosing to share a story that has been weighing on me all week. It's not something I speak of often, but last week I was asked by a doctor how Mac died and it took me right back to that moment...
It was November 27th, 2002. Mac had just spent weeks in PICU (the pediatric intensive care unit) due to graph vs host. The graph vs host was due to his STEM Cell Transplant. Even though the STEM Cell's were the best match possible, they're foreign cells entering a body, so your body does everything it can to fight it off. They put patients on medicine so that your body, hopefully, accepts it willingly, but if that doesn't happen the side effects are unlike anything I've ever seen. We were told night after night that Mac wasn't going to make it and I was pretty sure there were a couple nights that I didn't think he would nor did I think we would. There were so many moments where I know we all stopped breathing. How is it humanly possible to look at a child you love so much going through all this, without feeling as though you are too? Well, it's not. We lived in constant faith and fear, but the adrenaline of it all kept smiles on our faces and playing games so Mac wouldn't see how scared we really were. Back to that fateful day...
Miraculously, Mac, was cancer free and going home! I had went to the hospital the night before. My mom and I had packed up his room both in the hospital and at the Kohl's House so they could just hop in the car the next day and drive to my house. I've always been known to have premonitions and deja vu, but I didn't listen to my gut that night. I didn't want to leave the hospital at all, but there was a snow storm coming in, I was five months pregnant and I had a five year-old at home two hours away, so it seemed logical to beat the storm and head home. Mac was going to be home tomorrow any ways, so I'd see him then.
It was the following morning, the 27th. I had just gotten out of the shower, because I had sterilized aka cleaned the house so it would be nice and fresh when they arrived home from the hospital. The next day was Thanksgiving and we were so excited that they were going to be home! My mother in-law pulled in my driveway and asked why I wasn't answering my phone. I told her I was in the shower and asked why? She said that I needed to get to the hospital asap. I told her I'm sure it was fine and that I'd call them. We'd been through this so much in the past month that it wasn't really registering for me. I checked my voicemail's and there were messages from nurses saying to come now. The hospital was at least an hour and a half away, but my husband was working towards the city. I called him and repeated what I was told. He had missed so much work in those past few months, so he said, "I'm on my way but I swear if they're just doubting him again, I'm going to lose it." It was completely understandable. None of us doubted Mac. He had been given a 1% chance of beating the cancer and here he was a year later cancer-free, so the words often got old. You got to the point where you would think, "Ya, ya. I hear your statistics, but let me show you the spirit of a child and not only any child, but Mac's will." I told him to call me when he got there and I'd be behind shortly.
Naively, I dried my hair and got dressed not knowing when I'd be home next, because I figured we'd be there a few nights. Well, my husband never called me on that drive in and I didn't think to much of it, but the minute I exited the elevator and stepped onto 4 West, I saw why. Mac had already been discharged that day, but had to wrap up dialysis, something he'd be on three times a week for an unforeseen amount of time, but once he was done, my mom and Mac would be in the car on their way home for the holidays. What they don't tell you is that the dialysis machines are set up for adult bodies and then adjusted to work for children. Every time Mac was on dialysis his body went into cardiac arrest. We would just be sitting there talking or watching tv and then you'd hear the monitors go crazy. We'd then be thrown out of the room, while they were trying to resuscitate Mac. The first time it happened I remember standing in the hall, watching through the glass just screaming help. I was 26 years-old old at the time and scared to my core. I just kept thinking, "No, no, no this can't be happening, Mac!!!!!" Then, it was over and everything would go back to our new normal. Well, the morning of the 27th, was a bit different.
Mac was ten and all boy, the the morning of the 27th while getting set up for dialysis, Mac asked my mom to lay in bed with him and hold his hand. My mom was exhausted from the past few weeks, which I could only imagine to be a parents living hell, and crawled in bed next to him. Knowing that their was going to be so much activity and people in and out of our house for the holidays and to see, Mac, the over the next few days they quietly held hands and peacefully fell asleep together. I can't speak for my mom, but from the stories I've heard, my mom awoke to all the beeping of a Code Red. Mac was in full cardiac. They were trying to save him. My mom ended up running out the door, out of the hospital and right across the street looking for help from the head of dialysis and then ran back to the hospital. In that moment, Mac was having an embolism which cut of his oxygen supply. Not knowing any of this had happened, I walked off that elevator giving my normal smile and greeting to the welcome desk, but no one smiled back.
As I turned the corner to his room, his dialysis nurse dropped at my feet sobbing and said, "Summer, my head knows I did the right thing, but my heart doesn't." I told her that this was Mac and I'm sure it'll all be fine. From what I hear, she took a leave of absence that day as these are not just patients to the nurses, they become family. I was not prepared for what I was about to walk in to. My mom was by the window holding Mac's hand. Mac's head was turned towards her and I couldn't see his face. My husband sat by Mac's other leg with his head down. Mac was making a noise unlike anything I've ever heard, but a noise I will now never forget. I hung my coat (yes, still in denial) and asked if he was joking with that noise. I would have been that surprised. Mac was funny. His doctor, was their and said, "No, but Mac's been waiting for you." I walked over and saw his eyes closed, his face not of my brother who was full of life, smiles, defiance and practical jokes, but of a body, a shell of who he once was." My mom gave me his hand. I talked to him and then asked his doctors instantly how long this could go on for. I couldn't take one moment of this, more or less days. They said it was up to Mac, he was comfortable, but they were pretty sure he was just waiting for me. Then it happened. A "Mac Move" like no other, his final joke to make us all laugh. It will sound demented when I write it, but if you were there and saw how lifeless he was, you'd know it was his last hurrah to me. He took a breath and blew blood out of his nose all over my face and shirt. We all started to laugh as I dry-heaved. He knew I had a weak stomach and being pregnant wasn't helping. He went to heaven just moments later at a time when we thought he'd be in the car listening to Shaggy, and heading home for the holidays...
*This was not Mac's final prank for me even though we thought it would be. God's always winking, so I've learned...
Kindly,
Summer
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