I originally wrote this post in June, then planned to edit it, get Chris to read it and maybe add a photo…however I ended up just getting into summer mode and never ended up posting it.  So here it is, 5 months later, but I thought it was still worth sharing.

It’s been more like a slow letting go, or gradual stop than a sudden end. Although Sam finished chemo treatment in November, he still had some non-chemo meds (Bactrim/Septra) to take until the end of May. It’s so great to have him completely off medication now. He doesn’t have to swallow pills and we don’t have to keep remembering to bring them with us if we’ll be away. It’s funny because a few weeks before he finished taking Bactrim we finally figured out a great way to make sure he didn’t forget any doses: We put the four tablets for the weekend in a separate bottle.  Doesn’t seem like rocket science but it was truly a flash of brilliance! Bummer that we didn’t think of that a couple years ago.

We have now begun the last section of Sam’s medical care.  For the next five years he’ll continue to have blood tests and see his oncologist.  Right now we’re still there every month, but that will be decreased as time goes on.  If  When he hasn’t relapsed in five years  he will be officially cured of leukaemia. Honestly, I do think of him as cured now, though I still pray health over him every day.  I think for me there is the niggling fear of secondary cancers, or if something is a little off with a blood test that it could signify a major problem.  But it is really not worth living in that place.  Trust is a much better place than fear.

There’ve been some big improvements since Sam came off chemo:

Appetite Sam likes food again!! I knew chemo had affected his appetite but hadn’t realised just how much until these past few months.  Now he’s eating so much more and actually enjoys food.  While on chemo he’d often just look at the food on the dinner table and sigh/groan. I rarely hear that now!

Energy Sam noticed that in his Phys Ed class he can now run faster and for longer than he used to.  I didn’t even realise that chemo was still sapping his energy.  He’d had times of very low energy during treatment so in comparison he seemed fairly good. He was able to ride his bike and run around, but now he’s got even more energy for that stuff.

No more pills! Although he’d become a total pro by the time he finished, Sam was very happy to no longer have to take his meds.

And how do we feel? It’s strange – there is the relief and joy of him being done, mixed in with grief and even weird nostalgia.  I’ve found myself revisiting a lot of the early memories and almost re-feeling it all again.  I think at the time a lot was just so shocking and so unknown that there were times when I just didn’t know what to feel and shut down into numbness.  Now I look back knowing there is a good outcome and yet feeling the pain and grief of so many situations.  Chris and I were recently talking about when we’d travel 2.5 hours in to the hospital and we’d have to stop halfway and put Emla cream on Sam’s port so it would be numbed just the right amount by the time we got there.  We’d learned the hard way that the effects wore off after a while.  Just thinking about it I started to sob…even though that is such a small thing compared to so much of what he had to go through.  I think it just hit home that it is not okay for kids to have to go through that stuff. Any of it.

There are also the good memories of the three of us listening to audio books on the way up to Brisbane, hanging out together in hospitals, going to the library and then for fish ‘n chips after a blood test…there were actually some good quality bonding times we got to have together that we wouldn’t have otherwise.  There is a part of us that misses those times.

And through it all I know there is so much to be thankful for.  Through the pain, grief, bittersweet joy and the unknown there are still times when I can look back and be thankful: for new relationships, for greater understanding of pain and loss, for feeling God with me and knowing he alone is enough.

Earlier this week, Sam took his final methotrexate chemotherapy pills.  Every Tuesday he’s been taking 12 methotrexate tablets and 1 mercaptopurine tablet.  He practised taking more and more of them at once until he got all of them down in two goes: he takes 6 or 7 at once!  We’re very nearly done now…it’s down to his final daily chemo dose which ends on Monday, Nov 14.  I can hardly believe it’s finally happening.

We just passed Thanksgiving weekend here in Canada.  I am so thankful for many things: that we can celebrate here with family, for our beautiful little girl, that we have made it through over a year being supported by Chris’s business, for our new community of friends we are developing here…and of course that Sam is coming closer and closer to the end of over three years of chemotherapy.

Last week he had his final lumbar puncture, which marks the end of chemo injections and the end of being admitted to hospital for his treatments!  The rest is done through CancerCare where he has his blood tests and doctor appointments, and he will maintain oral chemotherapy for another month yet.

LPs start off with Sam getting hooked up to an IV, which is the part he really doesn’t like.  Of all the pokes he has to get, somehow that one in his hand is the worst for him.  Here’s how he feels about it:

After he’s ready to go there’s a bit of time to relax before they take him in.  This is Sam’s favourite part because he gets to play on the iPad!  

In the treatment room they inject him with anaesthetic so he’s asleep for the procedure, then they roll him onto his side to extract some spinal fluid and inject the chemo.  Here in Canada they allow a parent to be in the room for the whole procedure, which is different than in Australia.  There we’d have to leave once he was asleep.  It’s been both interesting and difficult to watch.  I find it so hard to see them putting such awful stuff into my son’s spine and Chris finds medical procedures rather nauseating – he’s nearly passed out once or twice.

Afterward Sam has a little nap as the anaesthetic wears off.  The nurses always seem to want to wake him earlier than he’d like.  If it were up to him he’d sleep there for hours!

We had a celebratory meal at Boston Pizza thanks to Grandma! It felt really good to celebrate the last of all Sam’s lumbar punctures – he’s had 21 in all.  What a brave and awesome kid!

A lot has happened since the last post over a year and a half ago.  Sam is still on treatment, but he’s now experiencing the cancer care system in Canada.  We moved to Manitoba last July and it’s been a big year to say the least.  We were shocked and grieved to discover Chris’s dad had blood cancer, so early in 2015 we began to make plans to move back to Canada.  At the same time we were pursing IVF to have a long desired second child.  So, in the past year we have sold most of our belongings, moved from Australia to Canada, bought and furnished a home, transferred Sam’s leukaemia treatment, started Sam in a new school and had a beautiful baby girl named Isobel. Chris has spent much time with his parents, helping at their house and doing the things his dad, Alf, is no longer able to do.  We do not know how long Alf will be with us and value the time that we have.

The transition from Australia to Canada was seamless as far as Sam’s treatment. Many countries have the same protocol and fortunately Australia and Canada are the same.  We were very impressed with how quickly they got us into the system here.  The paediatric cancer care facility is excellent and very kid-friendly with toys, video games and activities.

Sam’s health has been stable, with only one emergency room visit since we got here.  He was sick pretty much all winter though – I think he caught every cold virus going around and then ended up with the flu, probably due in part from his suppressed immune system and just being exposed to a whole heap of Canadian germs that his body hadn’t experienced before.  Thankfully spring has arrived and he hasn’t had a cough in at least a month!

We also had an interesting development with Sam’s port-a-cath where they access his vein to take blood and give chemotherapy.  The skin covering it started to thin and slowly his body began to push it right out!  We knew it wasn’t looking good and then one night as Sam got ready for bed he noticed the port was actually exposed.  So it was off to the hospital for emergency surgery the next day.  They removed the port which means that now all bloodwork is done through his arm and chemo is done through a regular IV.  He was pretty upset about this at first as he was really comfortable with everything being done through the port, but now that it’s out he was saying that he actually likes it better.  This is partly because now he only has a scar on his chest rather than a strange looking bump.  A port defined him as having cancer but a scar could be from anything.  He no longer feels he needs to wear his rashie when swimming indoors.

A few little differences in the medication has taken some getting used to.  Some of the tablets here are bigger or a different shape so they’re a little trickier to swallow.  One medication only comes in 2.5mg tablets rather than 10mg so Sam is having to take twelve at a time rather than three!  The last time he had to take those he thought he’d see how many he could swallow in one go. He got up to four – what a champion!

We are now counting down the months until the end of treatment.  November 2016 – hard to believe it’s only six months away.  It’s been a long road and a third of Sam’s life.  Sam is particularly looking forward to not taking medication anymore.  He almost can’t remember what it was like before he had to take his chemo everyday.  We had imagined celebrating this milestone with our Aussie friends.  It’s been difficult moving partway through treatment – our friends who walked with us through the turbulent early part of the journey are now far away.  We are thankful however to be with family, making new friends and re-establishing old ones who can be part of our lives here and look forward to celebrating with them in six months time.