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.