Our Life with Leukemia: September 2014

September 2014. It seems this summer has flown by. Normally, the passing of time is not something I look forward to but in a life where we are happy to scratch months off of the calendar, in order to bring us closer to the end of treatments, but also trying to learn to live in the moment and not take any of the time we have together for granted, the passing of time is a welcomed event.

The start of this new month, however, fills me with sadness and anger. Tomorrow was supposed to be Victoria's first day of school. She would have been the youngest in her Junior kindergarten class but she wont be there. She has started her maintenance phase, but by the time her meds are well sorted out, it will be prime cold and flu season. Not a good time to start reintegrating into social settings, especailly in JK. The hope is that she will join her class in the spring. Have a chance to learn the routine, make some friends and figure out the rules before Senior kindergarten next fall. She is only just a bit older than 3 and a half years old so it's not that big of a deal. What upsets me is that this is really the first time, since her diagnosis, that she is not doing what she would be doing if everything was "normal". There are lots of things about her life that are not typical for a 3 year old, but the first day of school is a pretty big deal. Worse yet, she is missing out on something she knew about, something she wants to do. Instead, when we drove past her school yesterday and she asked about going, I had to tell her that she has to wait until after the snow melts and when she is a bit better. To which she replied that she was "all better now" :)

I am happy to report that Victoria is a couple of weeks into the last phase, maintenance. This phase just keeps repeating itself over and over again until roughly Feb 2016. We had some initial difficulties trying to get her to take all of the new medications but things have sorted themselves out. The best news of all is that she no longer has to take an injection form of her blood thinner. Yay for no more needles!!!!

We have been taking her into CHEO regularly for blood work but that's been about it. Her treatments now consist of nightly chemo and blood thinners, steroids for a week each month, chemo at CHEO once a month and 2 lumbar punctures every 3 months. Her counts have been great, too good in fact. If they are still as high next time, they will likely increase her chemo. It's all about finding the right dose of chemo to keep things in check. For now though, we are making the most of her immune system being so strong. We went to the park together, the pharmacy, the grocery store and Canadian tire, all the normal stuff she has been deprived of over the last 9 months. She had a blast just being out in public.

Last week, the whole family was fortunate enough to spend 4 nights at Camp Trillium. Camp Trillium is a camp for kids with cancer. In the typical "can't plan or count on anything" childhood cancer lifestyle, we almost didn't make it. The morning of, we received a phone call from a CHEO emerg doctor informing us that some of her previous blood work/cultures showed that her port a cath may have been infected. It meant that we had to drive back into Ottawa to repeat the blood tests. She was otherwise fine and fever free so they did clear us for camp. We were 10 minutes late arriving at the boat (but they waited for us!) and I had to spend the next 48 checking my phone, but we were happy we made it and she was just fine. Unfortunately, 2 other families we know were not so lucky. They also ended up at the hospital that day and were not able to go. We had a wonderful time meeting other families who are either going through similar situations or who have finished treatment. Each of the children were matched up with a counselor, their "special friend", who spent the whole day entertaining them on the island. This was great because it meant that the parents got a bit of downtime too. We enjoyed canoeing, kayaking, sailing, a trip to the Sandbank sand dunes and more. It's a magical island filled with wonderful people. No one wanted to leave and we hope to return next year.

September is also Childhood Cancer Awareness month. The ribbon colour for childhood cancer is gold. Until our own personal experience with cancer, I never new about any of this. I know I'm not the only one. There are many activities going on including a Neon Night fun run benefiting Childhood Cancer research and and awareness event at Parliament Hill that we plan on attending.