Moving Forward

What a whirlwind the last few days have been.

First of all, I must say what incredibly supportive friends we have. I put a request out on Facebook asking if anyone had contacts in the media to help spread the word about the issue of drug funding for rare diseases here in Ontario and didn't they just go all out! I don't want to jinx anything by being too specific just yet, but we're hopeful that we'll be able to share our story as part of the big picture of the challenges that patients with rare diseases face. Keeping our fingers crossed!

A bit of good news today at my oncology appointment. My leg tumour is the same size as it was this time last year. I'm not sure if we have ten months of prednisone to thank for that (for all the nasty side effects it had better have done something positive!). It's been over two years since I had a full body bone scan, I must admit even with today's good news I'm a little anxious about what that might show. It's unusual for an Erdheim Chester patient to have the bone involvement on only one side, it's most often mirrored on the other half of the body.

It's funny how things come around in life. When we first moved to Burlington almost six years ago I wanted to jump into being a part of my new community. A local clothing store was holding a fundraiser for the Juravinski Cancer Centre in Hamilton and asked if I'd be willing to donate a portrait package as one of the silent auction items. I happily did so, and through this donation met a wonderful family who subsequently referred me to several of their friends for portrait sessions. I count several of these families as good friends today (and they bring tears to my eyes when they tell me to hurry up and get well so that I can photograph them again!)

Today I was able to see the Juravinski Cancer Centre today for the first time as a patient (even though ECD is not classified as a cancer, an oncologist is often part of the patient's medical team). My oncologist had transferred from Mt. Sinai in Toronto, and I happily followed him to his new hospital. After all, he was the one who diagnosed ECD and for that we share special connection. His first ECD case, and I do hope his last.

And lastly, it would appear that our insurance company may have caught wind of our efforts to contact the media. I received a call yesterday asking for proof that the pharmaceutical company had indeed limited my trial to three months (I was able to get that document from my doctor in Toronto), and were willing to reconsider their decision. Hmmm, let's see what the next few days brings!