Making Days Count

 Cancer teaches you to measure everything in days. Each day to be handled individually without trying to think too far ahead. You cannot let yourself play the "What if?" game about the future because it is too scary to contemplate. So you plan for today and maybe tomorrow, but rarely beyond. 

In the same vein, each day your loved one survives is to be celebrated, even if only in your innermost thoughts. Some of us optimists want to celebrate, but our more cautious (maybe even a bit paranoid) partners are too afraid to celebrate too early. So anniversaries and milestones are marked quietly with little fanfare, but many silent prayers of gratitude. Mostly we just try to make the days count while silently counting them.

Yesterday was 200 days since Abby donated stem cells to save her brother.  I started her day with a big hug and a quiet thank you for what she did. At the time that she did her collection we thought he'd be getting them 16 days later, but just 8 days after he had relapsed and the transplant was shelved. It would take another 111 days before he'd actually receive the most amazing gift he'll likely ever get  (besides a child of his own one day if that's ever miraculously possible for him after all of the chemo and radiation) from anyone. 

As I donated blood on Thanksgiving weekend (apparently a record according to my nurse who said it took me only 4 minutes and 15 seconds to get my entire donation out and that's the fastest she's ever seen it done), I reminisced and marveled at how my 11-year old daughter sat with her blood pumping in and out of her constantly for 5 hours for her brother and all of us. I sat for a mere 4 minutes and 15 seconds, which will also help to save a life somewhere, but I can't even imagine what Abby really felt as she went through this.

Today is 90 days post transplant for Ollie and next week we do the long anticipated 100 days scans.

Ollie is taking the scans into stride, although he knows they're pretty important. He knows because he heard me asking his Nurse Practitioner to ask his oncologist and post-transplant doctor to scan his whole body to be sure there's no cancer. 

They were going to do just an MRI of his head. This does make sense because it's where his Anaplastic Large Cell Lymphoma has been most persistent and problematic. However, lymphoma is a big jerk that's good at hiding and I reminded them that while Ollie is doing really well and has no visible signs of disease, he didn't at first either. Were it not for the tiny "blessed bump" that appeared on his neck we might never have known because he was so well otherwise. His bloodwork was perfect, his energy level was super high as usual and he appeared well and normal. And we know he had lymphoma before the bump appeared. 

He wants to ring the bell at CHEO. But we don't want him to ring the bell until we feel confident that his treatment is really done. So we need the full body scan to be sure it's not hiding. We also need it to help us get past this feeling that we're just waiting for them to find it again.

In actuality thinking scans will reassure us is somewhat ridiculous because it can always come back or he could get a secondary cancer after scans and at any time. One of the outrageous ironies of cancer is that the chemo and radiation treatments could cause more and/or another cancer! What a world we live in that we have to accept this risk to try to save our loved ones a first time and just hope there are no subsequent times.

Thankfully we have an amazing team who know what we have been through the past year and that we are reasonable people who advocate for what our child and our family needs to survive. They came back suggesting a head MRI and a full body CT on October 28 to be sure. I told them if they feel that'll tell us what we need to know, we're good with that. This is also hard for me as I know the first MRI and CT he had a year ago that same week were inconclusive. They saw something, but didn't know what it was for sure until it was biopsied on November 11th, got the pathology on November 18th (Mario's birthday so I'm hoping he doesn't remember this from last year and I'm somewhat comforted at this moment that he doesn't read this blog) and told us on November 19th. So part of me says, how do they really know from the MRI and CT? 

The other now wiser and more knowledgeable Momcologist part of me says that if they see anything this time, they'll immediately assume it's cancer again, whereas at the beginning, they assume it's everything else first and slowly work their way up to the Big C through the process of elimination. Strange how things go in reverse on this end of cancer. I wish they could have started with cancer and eliminated that for us first. If only...

Also as part of his 100 days prep he has had a few more tests...another chimerism test (we'll hear results tomorrow, but expect it to continue at 100%), an EKG, an Echocardiogram and a bone density test. He had this test on Thursday.

This time they jokingly confirmed that he did still have bones (he seemed nervous after that like he thought they seriouslly believed he might not) and could see them properly since he didn't have contrast from a CT still in his body this time! 😄

Overall he's in the green zone, with a slight dip into yellow on his left hip. Not sure what we'll be doing yet about that, but there are treatments that can improve this. Also, I am relieved because his spine is a -0.4 putting his solidly in the green. At one point when his back was hurting before transplant they had been concerned that he had osteoporosis and a fracture in his spine. Thankfully an x-ray confirmed that he didn't. I was also concerned given his many lumbar punctures and the fact that we seem to have genetic issues with the lower spine deteriorating prematurely (I have it, as does my brother, two cousins and an aunt). It did confirm as we suspected that he has a very hard head! 😄

He continues to get stronger and more stable physically each day. He can now walk many blocks without a break or feeling winded. 

He's standing, walking, climbing stairs and dancing all the time now. 

He's stumbled upon the Christian Rock Band called, Skillet. A Skillet song was used in one of his favourite Beyblade cartoon shows, which is how he found them and asked me to add it to his latest playlist. He loves the song called, "Back from the Dead" and pretends to dance like a zombie to it. What strikes me though, are these lyrics:

"Light it up, light it up, now I'm burning

Feel the rush, feel the rush of adrenaline
We are young, we are strong, we will rise
Cause I'm back, back, back from the dead tonight
To the floor, to the floor, hit the red line
Flying high, flying high at the speed of light
Full of love, full of light, full of fight
Cause I'm back, back, back from the dead tonight
Back, back, back from the dead tonight."

A Christian Rock Band and a song about coming back from the dead resonates with him?! There are signs everywhere...

Ollie has discovered that he can still play some of his favourite games like Kerplunk.

And loves to get homework from his vision itinerant teacher where he gets to be creative like imagining and designing his own alien, although daddy may have had even more fun than Ollie working on this one...

He is enjoying Treasure X because you not only get to be destructive by breaking up plaster blocks, but you also get to dig and search for the pieces of the figures, which is highly tactile (and messy, but he can do it in his own without constant assistance and that's more important).

And the many lock and key crypts and safes challenge both his dexterity and his mind.

He got a new basketball game for what will soon become an epic playroom out back. Very first shot playing with the new basketball game, he got it in the basket. Unbelievable.

Since we know we're housebound for many months yet between being immuno-comprised, needing regular vaccinations again in the second six months after transplant (beginning around February) before he could go anywhere in public and of course, COVID, we've decided to make use of an unused space and give the kids one more place to go for now and after COVID when they can finally have friends over again. We'll share a big reveal in a couple of months when ready.

Also playing road hockey in the back whenever he can and now we have a ball that makes noise to help him find it. 

Before cancer he was a snuggler who was starting to be the big boy and pull away from us. One good by-product has been his return to hugs and holding hands regularly. I never want to let him go...like ever again.

Mostly he's happy, with moments of frustration at having to relearn how to do something or wait for assistance. 

I'm reading him the book, "Run" about Terry Fox. He gets upset when I cry, but try as I might I tear up regularly and he can hear it in my voice. I try to reassure him that 

it's not sadness, but just gratitude and empathy for what that brave young man did 40 years ago. That I can now totally imagine how his mama felt about her brave and determined boy.

Ollie, too has big feelings, but he's always had these. We all have them and did before cancer, too. Maybe our big feelings actually make more sense now. We're all working at sharing and processing them better and trying to be patient with each other as we each take our turn melting down, feeling sad and being loved back into comfort and happiness again. 

The Last Battle

The last handful of days have been eventful and exhausting. On Sunday we learned that our CHEO friend little Malcolm passed just ten days shy of his first birthday. His brave mama was my first real friend at CHEO and Ollie adored Malcolm. They had learned Friday that treatment was not working and they were preparing for end of life. Gut wrenching. 

I cried so much over those three days. I mourned for a beautiful family who have fought so fiercely for 6 months, living far away from home, constantly in hospital and still always being so friendly and kind to everyone around them. I wept for little Malcolm who loved sitting on the nurses laps while playing with a calculator. We had joked that he'd be an accountant for sure! I was sad for his sister who not only lost her brother, but 6 months without her whole family together. And I tried desperately to understand why some of us get a chance to save our babies and others don't. Why was his last battle one he couldn't win and ours is win-able?

I was indebted for the chance to save Ollie before, but now I feel like we really have to do this for those that don't make it, too. That we have to fight even harder to be successful in transplant to vindicate the loss of brave warriors like Malcolm. I'm not sure how Guardian angels really work, but maybe Malcolm is now Ollie's. This thought comforts me.

So the week had already started off difficult and then Ollie had multiple tests at CHEO each of the last few days so that Sick Kids Hospital is totally certain we're ready for transplant. 

Monday's CT confirmed that there is no evidence of systemic cancer. This is a huge relief. Now we just have to keep it out of his brain until radiation begins on July 14. 

Tuesday Ollie was supposed to get bone scans done to confirm his bone density as they can see on the MRI and x-rays that his bones have thinned and suspect that he has osteoporosis from the chemo and prolonged steroid use. 

They can do a calcium infusion called a bisphosphonate every 4 weeks that will help, but this could mess up his radiation and stem cell transplant, so we have to wait until after. 

Alas, after doing the first scan (see photo below), we could see that the contrast that Ollie had for the CT on Monday was still present, so they were unable to do the baseline scans because the bones would appear thicker. Hopefully we can do them at Sick Kids next week.

The rest of the tests were rough Tuesday because Ollie was tired and grumpy and frankly, scared about transplant. This makes it all so real. 

He also had a GFR test to check his kidney function, an Echocardiogram to check his heart, bloodwork, a dressing change and a COVID test. He fought the COVID test and after many attempts to persuade him to cooperate, four of us had to hold him down while he screamed, cried and kicked. He was so angry. 

Afterwards he cried in agony and said he was so tired of being tortured and didn't want to do it anymore. In his dramatic 8-year old way he insisted he'd rather die than be sick again and not have control over his own body. I cried with him over the injustice and indignity of it all and told him I hated to force him, but we have a chance to get well (a chance some never get) and we're not going to let it pass us by. 

All the while, the empathetic child life specialist, Manon was with us and rubbed my back and Ollie's intermittently as we both cried. She and the nurse, Sue (who had been there for our very first procedure which coincidentally was a bone marrow puncture) were kindness personified and I was overwhelmed with gratitude for these strong women who help us

with the hardest things imaginable and still come back and do it all over again the next day. It takes a special kind of strong and dedicated person to work with sick kids and their families day in and day out.  They are all angels on earth.

Thankfully there have been good moments this week that make up for some of the bad. Abby participated in the Great Make A Wish Campout to raise money to help fulfill the wishes of Wish Kids like Ollie and our friend Hillary. 

The rain came, but was short lived and left a double rainbow in its wake. We raised $1,100 thanks to the generous donations of friends and family. I feel like we're always asking you to help, but you keep showing up! Hopefully going forward it'll be just this kind of help we ask for to help others instead of ourselves.

Ollie was sad not to be able to camp out, so he and daddy made a tent around his bed and had epic Beyblade battles.

Ollie also had two osteopathic treatments this week. Dear family friend Elliot Vlad offered last fall to treat Ollie for free and I admit, I knew little about osteopathy. I did some research and found that osteopathy can at the very least help cancer patients to manage pain and discomfort and relax. That was enough for us as Ollie needed all the help he could get. Elliot began treating Ollie in January, coming to the hospital and doing treatments, often when Ollie was sleeping. What we found was every time Ollie had a treatment, he'd sleep better, the next day he'd have way more energy and he'd be able to do things he hadn't done in a long time (like take a long walk or climb stairs). 

At one point Mario was with Ollie during a treatment. He didn't know Elliot that well and he is a natural sceptic, but this is what he texted me after the treatment. 

Ollie's feet and legs have been very swollen because he is retaining fluid and his lymphatic system is blocked up from the steroids and chemo. So Elliot saw Ollie Monday after his regular day at his and his wife (and our dear friend) Tamara's clinic, Life Therapies and also gave up part of his Canada Day yesterday to squeeze in another treatment. 

The difference is always impressive. Ollie hadn't walked up the stairs without assistance in days, but Monday night and since he's had no issue and says his feet don't hurt anymore. He's able to get his regular shoes on for the first time in weeks. On Tuesday at CHEO he was his old full of beans self and even his oncologist couldn't get over his energy level and how well he was moving.

Most important, Elliot has schooled us on what we can do at home to keep him moving well. Ollie is also under strict instructions to wiggle and shake his body a lot and he is happy to oblige.

I have long believed that it's generally a combination of therapies that heal us and wish that hospitals and governments that make decisions about what is a covered treatment and what is not could better understand the intrinsic value in things like osteopathy. We are beyond thankful for Elliot and Tamara (and their sweet kiddos who are friends with ours) for sharing their skills and for their ongoing kindness.

Abby has been readying to leave again, knowing she likely won't see her friends in person all summer. I am struck again by how much sacrifice she has had to make this year to get her brother well and how most of the time she accepts it with grace.

Chewbacca (the cat) seems to know that his warrior buddy is leaving again and has been his constant companion lately. Ollie is going to be so great with his CNIB Buddy Dog when our turn comes to get one after he is well!

The selfless folks at Gabriel Pizza came through with half baked pizzas to freeze and take for the journey to Toronto. Ray Skaff, Mike and team at their Vanier location on Montreal Road arranged it all and were so gracious and sweet when I picked them up yesterday. 

Also yesterday on Canada Day, I got a call from my lovely sister-in-law, Nikki to tell me that her brother and mother in Blenheim, Ontario (my hometown) had seen Ollie's Pizza on the Marilyn Denis show. So I went online and watched and sure enough, they featured it as a Good News story! You can watch it here at 35:38. So we've gone national with our little story about a boy, his pizza and helping kids fight cancer through Candlelighters. 

When I started this blog 8 months, 116 posts and almost 99,000 views ago, my main goal was to raise awareness of childhood cancers such as his very rare Anaplastic Large Cell Lymphoma. Never did I imagine that we'd go national or have followers from around the world. Mario and I were teary yesterday watching our story on The Marilyn Denis Show and we are awestruck that so many of you are interested and following along. Thank you for validating my labour of love.

So we finished packing what we could last night and fell into bed exhausted.

Today we're on the road to transplant. It feels surreal but so good to be doing this again. I feel more confident and we're all less stressed this time, knowing better what we're getting into. Ollie has been great the last two days. Getting to his place of strength where he knows that he has to do more hard things, but pragmatically accepting that he just needs to get them done. He is a model of adaptability, perseverance and determination. 

Thanks as always to our village for equipping us for this last big battle. From bringing us dinners the last weeks and sandwiches for the journey, taking care of our home and zoo of pets while we're away, offering to take Abby in September if school starts normally, packing us up, and sending so many messages telling us you're behind us, we know how blessed we are and that we've gotten this far due in large part to your love and contributions. Ottawa, we'll miss you and be back as soon as we can with a well Ollie.

Toronto, we're on our way! Thanks for already helping us by making masks mandatory in indoor public spaces starting next week! We look forward to a much better experience with you this time!