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. 

My perspective (by Abby)

My mom says writing a blog post is a great way to control your emotions. I have a lot of big emotions and feelings about what's going on with Ollie right now. I remember the day I found the bump; Ollie and I were brushing our teeth in our bathroom, when I noticed a small little red spot that seemed to be blistering on Ollie's neck. After I had found the bump, I told my parents that I found a red spot on Ollie's neck that appeared to be just a sunburn. The "sunburn" kept getting bigger and bigger and that's when we knew that it wasn't a sunburn. Before arriving at the heart breaking diagnosis, he visited countless doctors who misdiagnosed the bump as something minor, like a bacterial infection. 

When one of the doctors suggested they go for tests at CHEO, that's when I started to really worry about his situation. In school when it was time for intentions during prayer, my intention was always that Ollie's bump wouldn't be anything major. The whole time when I was thinking what the bump could be, cancer was always at the top of the list. I also remember the day we found out the diagnosis, my mom had told me that we were going to find out the results of all the tests Ollie had done at CHEO and she also said that it was likely that it would be the day that we found out the diagnosis. My dad was driving me to school, when we were in the car I said "Dad, do you think Ollie might have cancer?" my dad said, "Abby please don't say that."

I had this gut wrenching feeling that everything was not okay at school that day. I remember that I was in science class when my teacher got a call on the intercom saying that my mom was going to pick me up. I went to the office to find my mom there. Everything was quiet. I came in and she was almost finished talking to my principal and some teachers. When we went to the car, I asked my mom if she got the results back and she sighed. Then she drove to a quiet street away from the school and parked. She told me what the doctors said and about the diagnosis. When she was talking to me all I could hear were the loud thoughts inside my head about how everything wasn't going to be the same. 

When we got home Ollie was sitting there looking kind of sad. I suggested we play foosball. We played foosball and I let him win. How I wish things were still like that. 

The first two rounds of chemo went by quickly. After his second round of chemo he was home for a brief while before he spiked a high fever. He left to go back to the hospital and after a week there we got the devastating news that it was in his brain and spinal cord. He lost his sight and most of his happiness. The two months that Ollie was in the hospital felt like years. 

I had strep throat during that time so I didn't get to see Ollie and that just killed me. He was also in isolation a lot and couldn't have visitors much. After two more rounds of really tough chemo, he finally came home and two days later he  had an infection and was back in the hospital for 16 days. He then came home for 24 hours and we left for Toronto to get him a stem cell transplant. I'll write another blog post soon about my donation. 

But before he could get my stem cells, he started getting bad headaches and after tests, they found cancer in his brain again. They said the only way to put him back in remission was to take these huge pills. When we found out that if he didn't take the pills over time he would die, I felt the same way as I did when I found out he first had cancer. I bawled my eyes out and prayed as hard as I could. I sent him a video when he was in the hospital of reasons why he should live. To my relief, he took the pills, no problem. 

Curveball after curveball, our family is beating the odds and kicking cancer's butt. We're praying daily that new friends we have met at CHEO and online whose families are fighting cancer do the same. 

The Bumpy Road to Diagnosis

In August 2019 we were just your average family enjoying a warm and busy summer. One day early in August, Abby pointed out what appeared to be a round sunburn on Ollie's neck where his shoulder met his neck. We assumed that was exactly what it was, so when it appeared to become an oozing boil we took him to the pediatric clinic. The pediatrician said it was a bacterial infection (not a sunburn at all) and that it happens because we all have little bugs that live on our skin and sometimes we have a reaction. Off we went with a round of antibiotics and his suggestion to see our own pediatrician in about 10 days time for a follow-up.

So he took the antibiotics, the sore closed up and the bump appeared to reduce to a small skin-coloured bump. By the time we were able to see our own pediatrician due to vacations and such it was early September.  By then the bump had grown and had started to turn red again. Ollie's pediatrician indicated that he needed a surgical consult at the Children's Hospital of Eastern Ontario (CHEO), but was unable to determine who to refer us to immediately. In the meantime, we saw a family friend who is a naturopathic doctor to get her opinion and see if there was anything else it might be or anything else we might do to get rid of it. She identified that there was also another bump in his neck that was likely an enlarged lymph node. She advised us to seek an ear, nose and throat (ENT) surgical consult with CHEO and not to wait, but to call or email them to figure out how to get this referral soon.

I emailed CHEO and got details on how to get our pediatrician to get them the referral, then called our pediatrician's office who promptly sent the referral. Within two days we had heard back from CHEO and within 4 days of sending the referral we had an appointment in their ENT surgical clinic. They took it seriously from the start. On October 22, 2019 we had our first meeting with the head of ENT. She and another doctor felt if it was a cyst it was atypical and thought it might be Tuberculosis or a relative of TB because it appeared to be infected. They decided to order a bunch of tests and thus began a whirlwind month of tests where poor Ollie was poked and prodded every few days.

Ultrasound identified a mass and the technician and the radiologist asked if we had cats, which we do. They suspected cat scratch disease. The blood tests we had next revealed that it was not cat scratch, lyme disease, malaria or any other number of possible infectious diseases. It did reveal that Ollie had somehow had mononucleosis at some point, which apparently is more common than we imagined and had depressed his immune system. The TB test was negative, but apparently that didn't rule out other possible relatives of TB. Next we had x-rays and then an MRI with dye injected. Many tests caused anxiety for poor Ollie who hates needles in particular. Throughout it all the staff at CHEO were incredible and I was so very grateful for their patience and kindness despite Ollie's fear making their jobs more difficult.

The bump had become like an entity itself and had been comically named "Sir Skateboard" by Ollie. Given I was in full-time french training during this time for work, I found it ironic that the word bump in french is "la bosse" because it really did appear to be the boss...controlling all of us and our future.

After all this we still didn't know any more, so on November 11th instead of attending the kids' Remembrance Day Ceremony at school as usual, we were at CHEO for the biopsy of Ollie's bump. The biopsy went well and during the two minutes of silence for Remembrance Day we were in hearing from the surgeon about his findings. Although they had all suspected it was infected, there was no infection and only mass. We were told we would have results within two weeks. Thus began the agonizing waiting.

During this time I got access to Ollie's MyChart online and was able to see the reports. The Ultrasound and MRI mentioned a "slight" chance of t cell cutaneous lymphoma so I began to research that and then pray harder that it wasn't that and I was just being paranoid in thinking it fit.

On November 18 we had his post-op to check the incision, but there were no results, so we assumed that we'd hear back later in the week. By the time we got home CHEO had called and asked us to be back at 7:30 the next morning to meet with the doctor before her 7:45 surgery. She suggested Ollie wait in the vacant waiting room with his tablet and the receptionist as we talked and I knew that was not a good sign. She was very kind when she told us that it was absolutely lymphoma and suspected to be something called Anaplastic Large Cell Lymphoma (ALCL) although they were still waiting on the specific pathology reports to confirm it. She apologized profusely that she could only arrange last minute for us to see the oncologist two hours later that day (without an actual appointment so she had obviously called in a favour and when we later arrived at oncology the receptionist wasn't even aware as the doctor had arranged it directly).

So we went to the cafeteria and I pushed food around my plate as Ollie watched his tablet and Mario and I started puzzling out what we would need to do and what this would mean. We knew that no matter what he was going to get through this and failure was not an option.

This post is longer and more detailed than I intended, but so may people have asked how we got here and in the words of Mark Twain, I didn't have time to write something shorter.