Clark: 1 Year with Leukemia

 I should probably just journal this but here we are. Also struggled to not write this all in one long facebook post, but I have learned a lot in this last year about oversharing to the wrong person or group can make for overwhelm and a 'telephone' game, but with details of our lives that end up stretched or changed. So if you've made it this far, know I appreciate you and your interest in the beginning of Clark's cancer journey and how our lives have changed so drastically in this last year. 

I'll never forget the last night in our Marathon home as a family. I was SO angry. Clark did not have a fever, but he was not sleeping. He was tossing and turning and making strange noises after he joined us in our (thankfully king) bed halfway through the night. I might have given him some tylenol, I don't remember. I do remember John going in his bed with him after I had begged him to because I could not sleep and I HAD to go to work in the morning (a thought/feeling I will forever feel guilty about and am determined not to get back into that mindset as I start to think about teaching/career again). After a little while, Clark returned into my bed without John (who I could hear was snoring in the other room. Eventually we got to sleep for a couple hours before waking up for school.

As he walked down the stairs in the morning, Clark complained about his hip hurting (which had hurt for a couple days about two weeks earlier, then gone away). We thought it was growing pains. But he was not quite himself...no cold or flu symptoms though, so off to school we go! I mentioned to his wonderful teachers that his hip was hurting again and to keep me posted and down the hall I went to my office to start the day. These moments are imprinted in my brain - around 11 am, I saw Mrs. Anthony in the window beside the Spec. Ed. room door. I knew that she was coming to talk about Clark. He was not himself; emotional, tired, pale. I called the health team, hoping to get him a referral for blood work, maybe his iron was low? And thankfully (like where else would this happen for a kid who is 'just not himself') we got a same day appointment for that afternoon with my wonderful PA friend. Clark and I went home and he was shaking with chills and asleep before we got to the bottom of the hill. At the appointment, we brought the chaos. Clark tired, chills and actually spiked a fever while there. Oliver, cranky and would not let go of me (poor dude had no idea what was coming). Incredibly grateful that we got that bloodwork req. and x-ray right away - just walked across the parking lot to the hospital (and thankfully John finished work - his new job as principal at MHS - and picked up Oliver). Clark did great - a little bit of a delayed cry with the bloodwork (again, poor dude had no idea what was coming). We waited in emerg and heard that white blood cells were low and we would need to be transferred to Thunder Bay to be seen by a pediatrician. Cool, no problem, probably nothing major. I googled but never thought it would be the last item listed (the worst case scenario - leukemia). We waited and waited, our lovely PA friend brought us some fun things to pass the time and necessities to make it through for a couple days, John brought some random clothes for the next day. We waited a bit longer but *this is what we were told* that the ORNG transfer had other emergencies and it would be later in the night, then EMS would not transfer Clark to the airport because he was not emergent enough, so we waited until morning. I remember walking around the hospital trying to get change for a $50 so I could buy a coffee...clearly not that concerned and super trusting of the hospital (because it felt like home - both my babies were born there, had been cared for there, etc). 

Eventually I asked if I could drive Clark to Thunder Bay (like he looks/feels okay, etc). And it was a yes! 'Amazing, now I'll have the car for when we need to come back home and I won't have to organize a ride!'. So off we go - complete with a cooler bag of Clark's blood samples - just call me Sloane's medical transfer service. It was a normal drive to Thunder Bay and I think we even had Nana's travel DVD player so that was a bonus. We got to the hospital, found the lab, dropped the samples off and went upstairs to be seen by the pediatrician. I remember Clark's physical exam where the RN pointed to all these areas on his legs and Clark said they all hurt. It boggled my mind. The pediatrician came and did the same exam and Clark said the same thing...I could not figure this out. We had known that the x-ray did not show any issues. A little while later, the pediatrician came back and asked to speak to me privately and I thought that it can't be good. I remember her energy and her eyes behind the mask telling me that they looked at his blood samples under a microscope and it was leukemia. They were transferring us via air ambulance to London that day. 

Then came the worst phone calls ever. It was extremely difficult to tell John and our loved ones. But the worst was having to tell Clark...we are going on a plane, you're sick, you'll need medicine, we're not going back to Marathon. I'm sure he was just as overwhelmed as I was! The air ambulance was a liiiittle nerve wracking for a us both...Clark was mostly concerned that he could not use the washroom (and because he probably could not wrap his head around what the heck was going on). I just kept trying to make it as fun as possible - we were going to fly over Auntie Bail and Uncle Thomas's house! We got to London Children's Hospital after what felt like the longest day ever. The ward Clark was in was amazing. We could use the fridge and breakfast nook area and a Ronald McDonald room with showers and laundry down the hall for me! Friends and family came to visit in those first few days, bringing necessities like jammies and clothes, toys and toiletries. Those days were a lot...overwhelming for me and confusing for Clark - all the blood tests, a port surgery, chemotherapy and lots of medical professionals in and out. Dad and Oliver arrived that weekend and brightened our spirits and tried to learn all the new information that we had been learning. Oliver continued to love basketball and play in the hospital room and also thought 'chase me through the halls' was fun. He stayed with Granne and Opa, Britt and Andrew and Bail and Thomas throughout the next few weeks, visiting when he could. We learned to be apart from one another which was heartbreaking, especially as he went back up north with John a few weeks later after Clark's birthday. After about ten days in the hospital, Clark got to go to our next 'home' (a theme this year), Ronald McDonald House SWO. 

We were pretty quiet at Ronald McDonald house (unless you count Oliver continuing his love for the 'chase me down the hall' game and Clark refusing to take his meds which often made for a yelling match). Everyone there was so nice - eventually Clark began playing with other children, but for the first month it was a lot of hanging out in the room, eating great food, and walks to Wendy's for second dinner or second lunch (dex does all that). We met other families with children with different forms of leukemia and felt a great sense of connection. We borrowed Granne's car which meant - freedom! Clark loved exploring London. Lots of visitors came which was lovely!

Clark transferred to Mac after the most intense phase of treatment - so that we could be closer to our family in Niagara. We stayed with our friend and doctor's parents in Waterdown (another new home). They were so kind and lovely to us! McMaster was great, but came with a few changes like finger pokes (much to Clark's dismay). But we got to go and visit cousins, aunts and uncles, grandparents and great-grandparents when we could, and many family and friends came by to visit us.

Once the summer months came and the four of us were back together, we did our regular summer routine of going back and forth between grandparents houses, and just added trips to the hospital in. I tried to work a couple jobs very minimally while John was off. Our original plan was for John to go back to teaching in Marathon in September, but as soon as we learned that Clark needed to be within an hour of a children's hospital for the next couple years, we knew that Clark would not be able to live in Marathon for a long time, or in the district even. So John had applied for some jobs in southern Ontario and got offered a VP job with Avon-Maitland DSB. John lived and worked in Exeter and the boys and I stayed with Granne and Opa (another place we called home) for a few months in the fall while attending appointments at McMaster. It was so nice to spend time with all our family members in Niagara  throughout the fall, and for Clark to make some new friends at nature school. We moved in January and transferred Clark's care back to London (which we are loving). We have been settling into the new community that we now call home (leaving our rental 'old house' and now in our 'forever...or for a long time' home), although we reminisce and think of Marathon and our friends that became family all the time.

It has been a hard year. A lot of change for all of us and really just all caught up with me recently. I appreciate those that reached out throughout the year, and apologies if I didn't respond or didn't keep up. Truly thankful for all of our family, friends, colleagues, medical teams, and even the strangers that have supported, prayed for, and encouraged us all in this last year. 💛