Our house has gradually evolved over the past few months to become as wheelchair-friendly as possible. We have, together with the help of many friends, old and new:
- widened the sidewalks
- widened the master bedroom doorway and traded bedrooms with him
- installed a wheelchair lift to take Tom up or down from the back deck
- built 3 small transition ramps to take the chair up or down levels because our front and back yard are at different elevations, and to be able to wheel in the back door. Mike has found that the house has shifted again and has had to tweak both front and back yard ramp elevations. With winter coming soon, we will also need a ramp at the garage side door, as we'll want to park in the garage
- of course, in order to park in the garage we need to empty it out (maybe you have seen us on Hoarders?) so we built a storage shed in the back yard. We aren't quite there yet, but hope to be parking 2 vehicles in the garage this winter
- installed new and wider doors at the back of the house and the garage
- rented a wheelchair van from Medichair on an ongoing basis
- installed a new toilet, sink and grab bars in Tom's 1/2 bath...all of it only used until Tom could no longer put weight on his legs
- since he lost the use of his legs, have borrowed 2 lift systems from Palliative Care to help move Tom to or from the wheelchair in the living room and in his room
- switched out the carpet for laminate flooring on the main floor, making it possible for Tom to wheel himself, and easier for us to navigate
What's Tom been up to?
- movies! (a lot, at least one every other week)
- special events courtesy of Chris Knox Foundation: WWE, Riders and Keith Urban
- VIP treatment in Club Seating for one Rider home game in August, thanks to some wonderful friends
- 'Spa Day' - at least once a week, use the large jetted tub in the Palliative ward
- church
- blood work and chest x-rays once per month in the clinic
- enjoying having visitors at home
- playing video games and watching movies and TV at home
He really enjoyed his birthday on September 2nd, and the small celebration we had at our house for a few friends. We would have liked to invite more, but wanted to keep it small enough that he could directly visit with everyone. We were all happy Nancy could be home for it as well!
I don't mind telling you how emotional his birthday made me - happy memories of the day he was born and his childhood, laced with the sorrow that this is likely his last birthday.
When his doctor recommended no more treatment be given, he indicated that in his experience, given how widespread the disease was, Tom may only have three to six months before the disease would consume him completely.
At this point, nearly five months have passed since Tom's last treatment. His blood count values remain within normal ranges, and his chest x-rays haven't shown any anomalies. That's the really good news. I believe that Tom is exceeding their expectations.
The bad news is the cancer has continued to damage his body. We have twice had to increase his baseline pain meds, and they are now 65% more than what he needed in May. These increases have all come within the last 30 days. As mentioned earlier, he can no longer place any weight on his legs. He can't bend his legs and he can't wear shoes anymore because he cannot flex his foot to put a shoe on.
Despite the challenges, we go out as often as we can. It's important to stay in contact with his friends, to laugh, to have fun. When he wants to go to a movie, one of us drives him to meet his friends and waits nearby, in case he needs us - unless it's at the theatre a few blocks from home. Outings have their challenges, since his legs have to be extended in front of him. If people bump into his feet, only covered by socks, it sends a shock up his spine because of the nerve damage. Not to mention being concerned now about the coming colder weather...
We'd like to go swimming, but although there are wheelchair accessible pools in the city, there aren't any with lift systems to help those who cannot transition from their own wheelchair to the pool wheelchair that can go right into the water. I'm waiting to hear back from someone with the City about this issue, as I have made inquiries.
Along with some of the other clinic families, we went to meet the Sears National Kids Cancer Riders as they came through town. Those folks were so amazing and inspiring! It's incredible to think of these people giving up their regular lives to ride across the country for kids with cancer. And some of them are in their fourth year of completing the journey - they are truly incredibly selfless people.
Nancy came home again this past weekend, as we had several family events planned: the wonderful folks at the Chris Knox Foundation had given us tickets to Keith Urban for the Friday night, as well as the football game on Saturday. Although he had some pain management issues and had to leave both events early, Tom was so grateful for these fun moments with family. Tom had wanted to go to the Terry Fox Run, but we felt the course was too uneven and too long for him - so he and Mike went to church this past Sunday while Laura, Jeanine, Nancy and I went to the Run (or in my case, Walk).
The next event coming up on our calendar will be the Wishmaker Walk for the Children's Wish Foundation on October 15 (see link at right). We hope our whole family will be able to go and support this event. I was so pleased when a friend of mine from work forwarded a post from our company's Intranet, and let me know that my employers will be sponsoring a team to take part in the walk, and covering their pledges, in honour of Thomas and our family. I'm looking forward to seeing some friendly faces there that day. Many of our fellow clinic families have been approved for a Wish, but haven't completed it yet because their kids are still in treatment. Our wish meant so much to us all as a family. Not only was it a break from the trials of treatment, we created some truly priceless memories. It's to be hoped that no child with a life-threatening condition will ever be denied their wish. To that end, Tom did an interview with our local Global TV station in early August to try and help raise awareness of what a great cause this is.
Time to wrap this up, I've rambled again...thanks for your patience, thanks for checking in, thanks for praying for us, thanks for supporting us and helping us. Please don't stop calling or emailing or facebooking or texting! We are so grateful for every good thing and every kindness that has been shown us, and do everything we can to keep paying it forward. Please don't stop praying and storming the gates of heaven for our boy. We believe that his continued relative good health is a miracle of sorts, and we are so grateful for that. We realize that every day is a gift. And that is true for all of us, whether we are in good health or not.
To sum it up: we are still FINE - still here - still putting one foot in front of the other.
Life may not be fair, but it's still good.
TTFN,
Thomas' Mom
