Adventures in the lab.....

Part of this new found journey to see if Andrew actually has a rare form of Muscular Dystrophy is genetic testing. We already saw the neurologist who so kindly checked the box on the genetics form that indicated the reason for the test was to "Confirm clinical diagnosis". What an awful box. Sounds like the decision has been made. Of course there is no way to know until someone in a basement lab splices genes....or at least I imagine that's what they'll be doing but it kind of makes your heart feel heavy as a mother to see that check mark. In defence of the neurologist there weren't a lot of choices. I think one was "patient has a family history/shows symptoms". I bet that box sucks more than ours. The other was "To obtain baseline". Not sure how someone would get a baseline of their DNA. Is it expected to change? I was never good in science. I used to regularly feel faint in Biology and I electrocuted myself on the first day of Physics. I kid you not. It really hurt too. Chemistry and I were kind of friends but you'll notice that after grade 12 I've never looked at it again. Sorry buddy. I was only hanging out with you until I made some new friends.....now I hang with the Social Sciences. Psychology and I are BFF's.

Anyway, back to my story. So Drew needed to get blood drawn in order for the lab to get his DNA for testing. In all my reading I'm learning some of the key things I'll need to know if Drew does get a diagnosis. The gene they are looking at is called the Dystrophin Gene. Basically it helps the body produce enough dystrophin for the brain and muscles to work properly. With Becker Muscular Dystrophy which is what the doctor is looking for in Drew the body does not produce enough normal dystrophin for that to happen. From what I understand there have been more than a hundred different micro-deletions on this gene that have led to people having Becker's. It seems almost amazing to me that when so many things could go wrong with this gene that they usually don't. The people in the lab literally will have to look at the whole gene to see if anyone of these hundred possible problems has happened in Andrew's DNA.

Of course Drew doesn't know why we are getting the blood work. He just knows that we have to go. The poor guy is absolutely petrified of needles. I can just say the word needle and he breaks a cold sweat and will start to cry. I'm not even kind of exaggerating. He goes into full out panic mode. About a year and a half ago we were at a McDonald's eating lunch when a guy came in wearing a poppy for Remembrance day. Drew just about crawled over me to get away from the pin despite the fact that this guy never came closer than 15 feet from us. You can imagine that it was a miracle just to get Andrew to come to the lab willingly. I decided to take him to the Alberta Children's Hospital for the test. They are a fantastic bunch and I've even gone to get my own blood work there. I knew that if anyone could get Andrew through it those wonderful people would. Drew was fine until they called his name. He was so worried that even at 11 and a half he had to sit on my lap in the chair. He was sitting there the way he used to when he was little. I couldn't help thinking just how small he seemed curled up in my arms. My sweet baby boy having to go through something that for him was just terrible. I couldn't help but wonder if this would be our new reality. Him having to put up with who knows what because he had something none of us asked for or expected.

Andrew sat there so quietly. One of the technicians made the mistake of saying "There you go" as she was switching out the first vial and inserting the second. Drew happened to look over only to see his own blood snaking up the tube in his arm. He began to sob but remained perfectly still. I couldn't believe just how brave he was being. It was a moment of both sadness and pride. I wanted more than anything to trade places with him. Thankfully they only needed two vials so it was over before too long. Drew stands up and takes a few steps while the technicians and I are chatting. He turns around and is as white as a ghost. In his own Andrew sort of way he says "I hate to interrupt but is it normal for me to be feeling all fuzzy?". The two ladies who had just drawn the blood dash over to grab him and help him back to the waiting area to lay down on a couch.

He is laying on his back in this colorful room. Pictures of whimsical cartoon animals in what looks to be a circus train are framed on the wall. I can't help but feel that the room is terribly out of sync with how Drew and I are feeling at this moment. I sit down beside him on the couch and stroke the hair away from his red, swollen eyes. His skin is still blotchy and pale. He's never seemed so vulnerable to me. I sat there thinking about how much I hate this process and the worst part is that this just might be the easiest thing he needs to go through in the next little while.

After a few moments Drew sits up. His color is better and he asks if we can go home now. We leave the lab and head out of the hospital towards our car. As we get to the parkade I look over to see that Andrew has started to cry again. I grab him and give him a hug and ask what is wrong. He looks up at me with tears in his eyes and says "My whole life I've had the same amount of blood inside my body. How will I ever get used to living with less?" In so many ways I wish it were that simple. I desperately want his biggest problem to be having a few less vials of blood. I tried to explain that his body would make more but he just didn't seem convinced. How will I ever explain something as big as Muscular Dystrophy to a kid who doesn't understand biology yet? I really hope I don't have to.

By the time we got home Drew seemed much calmer. He had made it over the first big hurdle. The true test will be for the grown ups in his life to wait for results. I've been told by several people it takes a long time to get results. However nobody can tell me exactly how long a "long time" actually is. I'd like to say that right now even 24 hours of waiting is a long time to me. I hope that we don't look back on this time with a fond memory of when we still had hope this wasn't really happening to us. I hope that it was just a minor bump in the road of life and eventually will become a distant memory of what never came to be. But more than anything I hope that I never lose hope itself for that might be the saddest thing of all.