It’s been almost a month and a half since I posted a blog, and truthfully, I don’t miss “blogging.” There was a time when someone I knew was diagnosed with cancer and he blogged frequently, and I had a discussion with a sister on if we thought we would blog should something like that happen to us, and I had concluded that I probably would not want to share something so personal with so many people. Little did I know cancer was lurking around the corner waiting to pounce on my beautiful family, and that I indeed would become someone who “blogged” and shared the journey, expressed some of the emotions felt, and informed thousands at a time about how we were doing.
So how are we doing? That’s a big question, but the overall answer is that we are all doing really well. Jacob feels well, his energy is slowly improving, and he is building muscle back and gaining weight. It has been so nice to be home more and all the kids are happier for it. To be able to go out and not worry about a fever or being too far away from the hospital or hiding inside because Jacobs counts were at 0 has been really refreshing, like there is some “freedom” again in our lives. Jacob does get bored as he is limited physically, still on crutches so cannot use his arms and hands for activities, and still has lower than typical energy. He still spends a lot of the day on the couch, reading, chatting with friends, listening to music, and watching YouTube. He recently bought himself a quad, and we are all having fun ripping around the farm and working on an area behind the barn to make a quad track with jumps.
Jacobs Wish Trip to Europe has come and gone. We went on a cruise on the Rhine River and toured some cities in Germany, France, and Switzerland. The holiday was incredible, the sights amazing, and the time away with our family without having to deal with cancer or hospital visits was beyond refreshing. Children’s Wish Foundation, an organization providing “wishes” for children with life threatening illnesses across Canada, granted Jacobs Wish, organized everything from the parking at the airport to the transfers from flights to the boat, booked flights, booked the cruise, and provided some spending money for tours and souvenirs as well. Yet another charity organization that has stepped into our lives to provide some form of help and support for us. Again and again we are astonished by the amount of people that step in to care and carry in various ways.
Jacob recently had his 6 week scans, which were delayed so they became his 8 week scans of his lungs. The next day we had the results, and there is no sign of cancer seen, keeping Jacob in remission. There is always some anxiety and feelings of fear with scans, and waiting for results, yet we all still feel the presence of God with us – providing us peace. That being said, even though these scans are now “routine” every 6 weeks, they feel nothing at all like “routine”. This isn’t a dental cleaning or oil change – and no matter how many years pass as we keep testing Jacob, not a single part of this road with cancer has felt routine.
Jacob continues with physiotherapy at home. Linda, our physiotherapist, drives in from Vancouver twice a week, and works with Jacob from a couple hours each time. Jacob is now allowed to bend his prosthetic leg when he walks, so it has becoming more challenging as his brain has to do a lot more thinking as he moves, but in typical Jacob fashion, he picked up on how to do it very quickly. It’s still a slow process for him. He is wearing his prosthetic about 4-7 hours a day, and our goal is to get him to be able to handle a school day wearing his prosthetic all day come September.
Jacobs port was surgically removed from his chest and heart on June 21 – exactly 52 weeks after it was put in. The surgery went well with no complications and Jacob was allowed to keep the port so we could use it for target practice at home. 😋 Jacob has another surgery scheduled for Aug 1 to remove the growth plates in his femur of his “good” leg, which will put him back in a wheelchair, require a 6 week recovery and set him back with physiotherapy. Because his rotationplasty leg is mostly tibia, it will grow at a 1/3 of the rate as his other leg, so to keep the knee and the ankle aligned, they need to stop the growth of his healthy femur.
I will continue to blog, but likely only every 6 weeks or so when we get scan results back – to keep the many readers informed. And while I’m happy to report less and less frequently, I do hope and pray that somehow, someway, sharing Jacobs journey has touched your life, encouraged you, or brought you closer to God or those around you.