This will be the first time I make the effort to sit and write a full blog of what has happened so far. I haven't blogged for a few years now. I have a few drafts with titles and main themes started but no finished products. As Anita said 2015 was full of some much needed normalcy and the year before that just felt like it dragged on week after week. The rotating 3 week cycles we were on with his chemo were draining. It took up much more of our time, patience, emotional stamina and money than we had anticipated. And when the big day came on August 28Th 2014 we were glad to be moving on. I remember that day well. I remember how fast it came upon us and how exhausted we were by the end of his treament. But something was missing. We had finally finished over 24 months of treatment but even with a final date there was now sigh of relief that day. We had already gotten him into remission in 2012 which was the main milestone I guess but this moment was about finally being able to stop being a cancer family and start being a normal family. And there in lies the problem. We felt the truth then but now we know it. We will never stop being a cancer family. Never. We will never be a "normal" family. Our universe will always have Nevan's Acute Lymphoblastic Leukemia right in the center of it. It shapes who we are and how we think and feel. It decides how our time and money is spent. It determines our future goals for ourselves and our children. It alters every single relationship we have. Our marriage and parenting feel it. Our relationship with our parents and the kids with their grandparents. Our relatives are pushed out further along with all our personal and family friends. Cancer consumes as much of their loved ones as it does the patient.
2015.....Anita said that we were happy to get back to the normal swing of things right after his treatment finished. And we did, Nevan went back to school and so did Nylah. Nevan still missed some time because of catching some flu bugs that required some checks by the hospital plus his many follow up appointments. I went back to work and although had to take a few more days off than expected they were all for Nevan's illness and I worked more than enough overtime to compensate throughout the year. We got caught up on things around the house. We tried to do some day trips with the kids. We tried to get together with friends and family but my work schedule is hard to match with other peoples jobs. We also were busy with counselling for all of us to deal with the toll of the previous 3 years. We all suffered in different ways and all needed time and help to move forward. Nevan did an amazing job of getting back into the social aspects of school and the academic as well (once he stopped being social all of the time :). Nylah is not very independent by nature so putting her on the back burner at a young age caused some damage but now that she is in school she is truly emerging as a bright courageous leader. She has a lot of spirit and we are working hard to let her be who she wants to be. The dark cloud above all of us is that Anita had to quit her job to take care of Nevan. I was able to go on disability to keep my job but took a 60% pay cut to be home with everyone. This all was done a mere 6 weeks after buying our 'forever' home and tripling our mortgage with tons of renos required. I wont get into the details but essentially we took almost $100000 in consumer credit that should have gone into renovations to improve our home and increase it's value. Instead those credit sources were used to hold on to the house and our life style with the hopes that the market would go up and we could repay the loans once life returned to normal and regained a full double income. The total income lost we figure is around or above $135000 after tax from both of us. We were very lucky in the beginning by having several people come forward to raise money for us through fundraising campaigns. We estimate around $40000 was raised over all including charities and fundraisers and tax savings for Nevans disability. We are forever grateful for the efforts of our friends and family to raise money for us.
One of the biggest financial tools we had in place was a critical illness policy on Nevan for $20000. I had it through my employer and took it along with many other products in preparation when purchasing the new home. The policy was denied in the end because of a hidden rule about not paying out for cancer in the first 90 days. We were half way there. Even so, Nevans cancer can be tied to symptoms of a flu or cold which means if he had either they theoretically could deny the claim. LOOPHOLES everywhere. Long story short , we took them to court, sued for the $20000 policy's worth, had the lawyer call us greedy because of the large amount of charity we did receive. Yes greedy because I wanted the money from a policy I was still paying a premium on to continue benefits for other illnesses for both kids. Life's not better under the sun. You get cancer and then they don't payout. The contract was so twisted you couldn't tell the difference between adult or child. So we chose to settle and walked away. Fighting further could have had them sue us for damages if we lost. We also signed a non-disclosure that as you can see I couldn't give less of a shit about right now. We left that court room that day and left everything behind us. It was undeniable proof to us how little the world cares about children with cancer. But look around you. Forget war and famine and global warming. Look at the litter and the road rage and the manner in which we speak and treat each other at the local grocery store or mall. We don't seem to care about a lot of things these days.
So 2015 passed very quickly for us. There was so many expectations on our part but with me back to work on long rotating shifts and the kids catching up on school, swimming, skating and piano, and Anita putting a tremendous amount of effort into securing a self employed income for her future we just ran out of time. We have so many people we have wanted to see but we couldn't find the time. If you are reading this and feel like we have not put effort into our relationship with you you are probably right. But it was out of a lack of time not interest. Catching up is taking so much longer and life keeps moving no matter how far behind we fell. I hope I can stay off work as long as possible so we can truly find the balance in our lives that we crave right now.
At this time I need to point out that the purpose of this blog is to inform on Nevans journey but also to document how we all feel and are dealing with his illness with respect to every way it affects us. PG 18 warning!!!! If "(dad)" is in the title there will be some colourful metaphors. After 20 years in organized labour positions I have become versed in many forms of foul language. Not proudly but one must adapt to their environment in order to survive and even thrive. And the term FUCK CANCER was coined long before I arrived. This is my blog and as such I write what I feel.
There now we can move on to current day or at least the beginning of our re-journey......
Funny story. all the words blog, blogger, and blogged are not in the dictionary of the blog platform I'm using..........
