I've been a single mom since Caryn was three. I had to keep my job; it wasn't a choice. Caryn is one of three children.
All those months she spent in hospital, I was there with her every night. I left work. I drove to SickKids. I would get up in the morning at six o'clock and head back to work. I did that for months on end.
That affected my boys. I found out more about that this weekend than ever before. They talked about the take-home meals they used to endure. We were referring to Little Caesars. They had buckets of pasta. I haven't had buckets of pasta in years, since she's been on this. But they remember that. They remember the Toonie Tuesday, because that's what they got on Tuesdays. I love cooking, but I wasn't able to do that when my boys were young.
I know this illness gave me a lot of strength that I didn't know I had. Part of the illness over Caryn's years was that there was no clear-cut treatment, no clear-cut answer. There were points when there were things happening where....
For instance, there was one apheresis machine in Toronto, and it got wheeled from Toronto General to SickKids in the underground tunnel. It could do two treatments a day. They decided after they'd started Caryn on it, and she was six months.... Maybe it was the first one they'd ever done this way. It was very scary, although I didn't know enough to be afraid. They wheeled it back. They did it for five days in a row. Then they decided that another patient needed it, and she wasn't going to get the machine. I was going to have to talk to the media and show my blue-eyed, blonde-haired little girl. In the end, the machine came back to Caryn. I have no idea what happened to the other patients who were supposed to be on it.
Through that, we, together.... When I say we, the doctors and I worked together on a plan that was agreeable to both of us in stretching out the treatments on the apheresis machine and trying whatever together. Together, we created research through this illness.
I don't mean to sound smug or smart ass, but I was the one who linked the nephrologist at SickKids to Dr. Kaplan at the Children's Hospital of Philadelphia at the time, so they could find out more about the research. All there was about Caryn's illness back when she was six months old was one chapter in a textbook, which they gave me to read. It was way over my head, but I learned to understand it. We've come a long way since then.
Certainly, lots of treatments are working, and the doctors know a whole lot more than they did when progressing through her illness. When she was diagnosed back in the day—I remember we could go on the Internet—there was one other case, and it was of another blue-eyed, blonde-haired little girl, but she did not survive the illness, the aHUS, the way Caryn did. Most kids, as much as they survived, were left vegetables. We've moved beyond that.