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.

This time last year we were up in Brisbane with Sam undergoing his first chemo treatments for leukaemia. It was such a time of unknown – we didn’t know how long we’d be on this journey, what the outcome would be, or how Sam’s body would react to the chemo. We were immersed into a whole new hospital world with a crash course in medical language and procedures.

Now here we are, one year later. We thought it was appropriate to celebrate, or at least commemorate the occasion. Sam was really excited about the idea of celebrating a year of leukaemia treatment. He thought it would be great to go up to Brisbane and not go to the hospital! We weren’t up for the drive so we had a special meal and family dance party instead. That seemed just as good.

One year later we now speak the language fluently. Words like mercaptopurine, dexamethasone, methotrexate and neutrophils are commonplace in our house. We bring our own swabs to the blood tests and have our own collection of hospital spew bags, gloves and masks at home.

One year later we are still navigating Sam’s wacky tastebuds. I’m still getting used to having a picky eater after having a boy who would eat almost anything with gusto for the first six and a half years of his life.

One year later we are living in the rhythm of treatment: Stop eating at 3pm, take tablets at 5pm, have dinner at 6pm. Chris has set alarms so that we’ll remember to give Sam his Bactrim twice a day on Mon, Tues and Wed and his methotrexate with dinner on Thursday. Every fortnight, on a Wednesday morning, we go for a blood test, sometimes to the local pathology clinic and sometimes to Tweed hospital. Trips to Brisbane are now a rarity at once every three months.

With the rhythm, we can’t forget that Sam is on treatment but sometimes I can forget that his body is being slammed with crazy chemicals. And then something happens to remind me…his energy suddenly plummets or a blood test shows he has low neutrophils and I am reminded once again of the delicate balance we are walking.

And one year later I am thankful, so thankful for Sam’s life. I am thankful for the medical system. I am thankful that we live in a country where his treatment is covered by medicare. I am thankful that we live within driving distance of a major hospital. I am thankful that Sam’s hair has grown back. I am thankful that he is able to run and play without pain. I am thankful that his body is staying healthy. I am thankful for new friends we have met along the way with stories of their own, and old friends who have walked with us through this journey.  And I am so thankful for my God who has sustained us and carried us through this past year.

The other day, we came home from the hospital loaded with an assortment of drugs in a big brown paper bag. And the reason for this? We won’t be going back to the hospital in Brisbane for a full three months! That’s right, Sam has now entered the maintenance phase of his chemotherapy treatment, and this follows a standard protocol, so basically, we are actually going to have a set schedule and be able to plan things in advance! So, for the next 2.5 years, this is what Sam’s Chemo will look like:

Every 3 months- I.V. Methotrexate Chemo at Brisbane Hospital

Every 3 months- One week of oral Dexamethesone Steroid

Every 2 weeks-Blood test

Once a week- Methotrexate Chemo Tablets

3 days a week, morning and evening- Bactrim Antibiotics tablets

Daily- Mercaptopurine chemo tablets.

The reason for this long term chemo treatment is that they have found that the leukaemia cells tend to hide out in different places in the body, the testicles and the spinal fluid being two major areas. They have found that this low dosage, long term therapy has been most effective at making sure all the leukaemia cells are wiped out. So Sam’s neutrophil count will be monitored through his blood tests, and that count will be indicative of how the chemo will be affecting any residual cancer cells, and then his dosage will be adjusted to try and get the optimum balance. Apparently they are aiming for a neutrophil count of between 1 and 2. A count of below one is where your body can’t fight infection as well, and above 2, the chemo is probably not affecting the cancer cells like it should.

So, anyways, all that to say that we are stoked that we have made it this far, and that Sam is really healthy for what he has been through. And now back to “real” life. Whatever that is……….

**I wrote this post probably a month ago, and never got around to posting it. so here it is. Better late than never.**

By Rin

We have made it through the delayed intensification phase of treatment and now are partway through interim maintenance II.  In about a month or so, we’ll finally hit the long term treatment schedule…maintenance.  For a while now it’s seemed like the holy grail of treatment.  Finally we will be on a regular routine that lasts for more than four or six weeks, and hospital chemo will be down to once per month.  Hurray!  It seems like a dream!

That said, I’ve been talking to some other mums who found maintenance to be a rocky road with many trips to emergency and sickness.  I’m aware that we could be in the same boat, but so far I’ve been constantly amazed and thankful at how healthy Sam has been.  Even though they are pumping crazy chemo chemicals through his body, he has stayed well, usually goes to school and often has energy.  I asked the doctor if it’s normal to be doing so well, and she replied, “We’d like all  our kids to be going as well as Sam.”

Thank you God for your grace on us!

The delayed intensification phase was…well… intense.  Sam had a lot of chemo, lost his hair, and we made numerous trips to Brisbane.  One of the hardest parts was giving him injections at home.  The nurses had inserted an access point, called an insuflon, in his thigh where we poked the needle in to inject the chemo.  Sam was quite terrified of the whole process.  It didn’t hurt for the needle to go in, but it was rather uncomfortable and his thigh sometimes hurt for several minutes after the medicine went in.  The scariest part for Sam was the first time we had to remove the insuflon.  That was big.  It took over 45 minutes of tears, reasoning, prayer, distraction, encouragement, bribery, etc before getting it out.  In the end I had to hold on to Sam while Chris just pulled it out.   We’ve found Sam’s biggest reactions and fears come from the unknown.  Every time something is new, he’s pretty freaked out.  However, I’d also say he’s getting braver and quicker to come to terms with scary things when encountered a 2nd or 3rd time.

Now that we’re out of the intense phase, Sam’s hair is growing back and his energy has picked up again.  My heart broke for him when he reported the results of his cross country race a few weeks ago.  When I asked how it went, he stated, “kinda good and kinda bad.”  The good part was that he finished the race.  The bad part was that he finished last.  Even though he has energy, he just doesn’t have the endurance.  Not surprising when his blood cells are constantly being knocked back by the chemo.  However, it’s truly amazing that even was able to do the race at all, and for that I am again grateful.