The other night, Justin went to another Jets game. He and Trevor had been given seats right behind the opposing team's net, so for one period of the game Pavelec would be in that net. We sat at the kitchen table for a couple of hours the night before, working on a poster that would hopefully get Pavelec's attention. Justin's wanted to let Ondrej know how much he appreciated all he has done for him. We cut out letters with my fancy scrapbooking machine, that has not seen any scrapbooking since I bought it by the way, but what better use for it! We printed a picture of Justin and Pav, the Jet's logo and a picture of Pavelec's jersey and stuck them all on a huge piece of neon orange poster board. Our work was not in vain, as Ondrej did see the sign (and Justin) and gave him a wave, a wink and a smile. It was a bright spot for Justin in a game that unfortunately didn't turn out in our favour. At one point, Trevor and Justin went out to grab a hot dog. While they were apparently standing in the wrong line by mistake, Justin told me he heard a guy behind them complaining to his buddy about it. His buddy hushed him and said, "The kid has cancer." Justin said he turned around and didn't know who the guy was. He was a complete stranger. So, there it was. The first time a complete stranger acknowledged the fact out loud. Sure, people stare and you know they are wondering, but this was the first time he had actually heard it being said. And that is what prompted the question.
He has been talking about his hair quite a bit lately...how he misses it. He told me that his hair defined who he was. It was his identity. I told him that it was his personality that defined him, but then I thought about all of the times that I have identified him by his hair: "Justin is the one with the thicker hair." "Justin's hair grows so much faster than Ryan's." "Justin's hair has a bit of curl to it when it gets longer." I remember when he used to wake up and walk out of his room with bed-head; a mop top of blonde locks. I can still see it in my mind's eye. It was a huge part of who he was. And he is mourning the loss of it. And to add insult to injury, it's not just the hair on his head that is gone. He has so few eyebrows and eyelashes left that you could literally count them. To tell him that it will grow back somehow seems paltry. Being thirteen years old has it's challenges, to be sure. Hormones are kicking in. The opposite sex becomes more interesting. It is a time of huge changes and insecurities. Imagine going through it with no hair. My heart aches thinking about what he silently deals with on his own. I'm his Mom. I would give anything to take it all from him. All of his fears, all of his worries. But I can't.
To date, he has gone through 7 rounds of chemo. One bit of good news we got the last time he was admitted for chemo is that from this point on, his chemo only runs for two days instead of three. We go in on a Friday and come home on Sunday. After the next one, they may be adding radiation of the tumour site into the treatment plan. In the protocol, it states that radiation be given between rounds 8 and 12, so anytime after the next round. This brings more unknowns into the mix. We don't know how he will react to the radiation. We've been told that radiation close to the stomach can make you nauseous, but that Justin's tumour was far enough away that it hopefully won't affect him in that way. We've also heard that radiation tires you out more than chemo. I guess we'll just have to wait and see.
It always goes back to taking things day by day. That's the best advice I have been given and the best advice that I can give to anyone else going through this. Oh, don't fool yourself into thinking it's easy to do. Sometimes it's painfully difficult. You rejoice in the moment when you hear encouraging results from the doctors and in the next moment, you see another child who isn't doing as well and you wonder. Your mind always skips ahead to the unknown. The 'what ifs'. It's emotionally and physically exhausting trying to stay positive all of the time, but we have to try because that unknown, that darkness, creeps into your head and can send you spiralling into a pit of despair. And when it happens (because it does), you have your cry and pull yourself out. You put on your positive face and move forward because that's what Justin needs. I'm his Mom. There is no other option.
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