Final Test of the Success of the "Abby Treatment"

[Photo Description: Ollie lies in the CT scanner with his feet going in first and his arms above his head.]

Yesterday we finally got those elusive scans following an extra month of "scanxiety" after we had to delay first for a cold and then we got bumped last week because 4 CHEO MRI technicians were out sick last week with COVID-19. This made for a very tense month around our house as we waited for illness to pass and for scan day to finally come..

It didn't help that Ollie's cold was in his sinus and caused eye pain, eye goop (diagnosed as viral conjunctivitis) and headaches, when in the past symptoms of his relapses were eye pain and headaches. 

[Photo Description: Ollie readies to have an IV inserted in his arm]

As always Ollie was amazing at getting through his scans day. Handling the IV insertion like a total pro, drinking the yucky contrast for 3 hours and waiting patiently for his turn.

While waiting and drinking he had a great session with his original child psychologist who is back from mat leave and couldn't believe how well-adjusted and amazing he's doing after everything he's been through. "The rumours really are true, Ollie. You're amazing!", she teased him.

[Photo Description: Dawn wears a mask and bears her arm to show a bandaid after getting her flu shot at CHEO]

I snuck off during his session for a short while to get a flu shot while there because I am a CHEO volunteer for the Oncology Patient and Family Advisory Council (PFAC) and the Research Institute. I had tried to encourage Ollie to be with me later as I took my turn being poked for once, but he had little interest. 

[Photo Description: Ollie is dressed in a hospital gown and pants and wearing a mask with a masked Dawn seated beside him defile waiting for his MRI at CHEO.]

We had to wait a bit for the MRI, so he was getting tired by the time they took us and had to lie still for 1.5 hours while they did full head and body scans. By the end he was getting wiggly and uncomfortable, but he hung in there. As usual I sat on the very hard plastic chair and prayed a lot. Naturally for my Ollie' s wellness, but also for other CHEO warriors like Griffin who was starting his chemo for his stem cell transplant at Sick Kids Hospital yesterday, too. 

[Photo Description: Dawn poses for a selfie wearing her mask and standing in front of a creepy clown painting in CHEO's MRI waiting area. Clearly Dawn is not generally a fan of clowns, with CHEO's now retired therapeutic clown Molly Penny being the exception.]

Totally worth the discomfort and seemingly never-ending wait as we got great news today - CLEAR SCANS!!! No evidence of disease after stopping the miracle drug Lorlatinib 93 days ago that has been our insurance policy against relapse for two years. So now we know definitively that the transplant with Abby's amazing overachieving half match stem cells was a real success! I've pretty much been in tears all night once again over the gift she's given him, and the gifts that God has given us.

This was a huge milestone to pass! There were minor things seen in the scans, like evidence of the sinusitis that he's had for the past month and inflammation still in his left eye that he had surgery on 4 months ago, but all exactly what we would expect to see and they said it was otherwise unremarkable. Unremarkable is amazing news in the cancer world! 😆

Monday we're back at CHEO for bloodwork and checkup, plus his final 3 doses of his childhood re-vaccinations after transplant. We're also sending his blood to Germany again to participate in an Anaplastic Large Cell Lymphoma (ALCL) study and to do the Minimal Residual Disease (MRD) test that can detect if there is any evidence of cancer cells left in his body. If this test is negative like last time, we rejoice. If positive we have decided with his medical team to put him back on the Lorlatinib as we won't take the chance of relapse again. Wish us luck, but honestly we're feeling pretty positive and hopeful right now.

So thank you all for your positivity and prayers. God and science are so unbelievably great and we are divinely blessed. If you could, please send some prayers for Griffin and his mama Tamy for a successful transplant. He's been battling off and on the past 4 years of his almost 6 years of life and deserves to get to true wellness, too. 

Scanxiety.

Scanxiety. It's real. The fear of waiting for medical scans and their results. Ask anyone who has ever been through cancer and they'll confirm it. So it's no surprise we're each stressed in our own way this week. Abby and I aren't sleeping great and she climbs into bed with me most nights right now after bad dreams or because the many thoughts in her head wake her and won't allow her to tumble back into much needed sleep. I'm not doing much better, waking multiple times in the night, often after dreams that I'm asleep in hospital and I wake to find that he's not there. Mario has said that he hasn't slept a single night without multiple wakings in a year. Ollie seems to be the only one sleeping well, but then he's still on a med that helps with that. 

He shows his concern during the day when he sometimes asks me, "My scans are going to be clear this week, right Mom?" Or simply states reassuringly that they're going to be clear. I've been telling him this for weeks as we got closer to 100 days post transplant. I've told him for almost a year now how powerful his brain is and how he has to believe that he'll get well so his brain will help his body to fight the lymphoma. So I've been telling us all repeatedly that he is well (because he is visibly well) and his scans WILL be clear because they have to be. We have to believe. Dr. Abbott told us from day 1 that we had to believe it, so we must. It's worked so far. Now someone please explain this convincingly to my subconscious mind so that the scanxiety will go away. Lots of comforting hugs are being requested and given in our house right now. Only 2 more days before we know for sure that what we continue to pray for daily is true.

While we wait, we've been busy trying to do some good. Abby, Ollie and I worked with student nurses from the Algonquin College/University of Ottawa Nursing Program and Canadian Blood Services to do an interview with CTV News on stem cell donation. The kids were excited to participate and did a terrific job. Ollie was his usual matter of fact and incredibly honest self. You can't imagine the many things he told them about cancer and the transplant that they thankfully didn't include! LOL My dad even called me excitedly the next day and said that they'd seen us on TV on the news in Southwestern Ontario! You can watch their interview here.

We're happy to know that the word is getting out in an effort to increase the Canadian stem cell registry. We were lucky to be one of only 25% of families with at least a partial match within the family. That means 75% do not have a related match and need anonymous donors. Because of COVID, we need more Canadian donors, especially from ethnic minorities. We have a Latin American friend whose brother needs a transplant and does not have a match YET. Healthy individuals between 17 and 35 years of age can request that a swabbing kit be sent to your home and stick it in the mail when done. Expectant mothers can consider donating your baby's cord blood, too. Honestly you have no idea how important this is until someone you love needs it. Please imagine for a moment that you do.

Abby also wrote a powerful opinion piece for CBC that should be posted soon and they did some video of her last week to accompany it. 

They chose some places in our neighborhood to shoot her visiting. What struck me as we went from place to place was how alone she seemed.

On the one hand this was deliberate due to COVID safety, but honestly also normally true life since right now to protect her brother she isn't seeing any friends physically. She has so much fear around losing people she loves. Unfortunately COVID is actually taking her away from people she loves even as she does it to keep our family safe. What cruel irony.

I took this photo of her in back of what should be her school this year instead of the virtual one she's attending online. This is after the school let out for the day and she saw friends from afar who were not wearing masks nor social distancing as they left the school grounds (we were across the street away from everyone and still wearing masks). She was so sad and upset and told me she didn't think COVID would ever be done because people couldn't make little sacrifices to keep each other safe. She also said how unfair it is that we've had to live this way for a year so far with no end in sight. Such hard life lessons she's learned this year...

While I waited at the park for her, I rediscovered something in our park that I never truly noticed before.

Braille! Ollie has played here since he was a baby and we never noticed this before. Funny what you don't notice that one day becomes so important to you.

Ever wondered what these weird lines cut into the sidewalk are for? Honestly I used to think that they were for the sidewalk snow plows to know where corners were.

Or these annoying bumps at the corner? Turns out both the lines and the bumps are for blind and low vision people like Ollie. It helps them to feel the corner with their cane so they know where to stop before waiting and listening to cross.

 

This little stinker is seeing a bit more. Shadows and forms when the lighting is good are allowing him to better orient himself. Last weekend he found his old bow and arrow set (which he reminded me we bought on our best day at Disney in California two Christmases ago, so his big brain has retained everything!) and was able to repeatedly aim wherever I was and narrowly miss me when I ducked out of the way and the arrow stuck to the wall behind me! In this case I didn't even mind being hunted as I marveled over what he can do with his limited vision. 

 

He's taken to the Brailler like a duck to water. The balance ball chair is strengthening his core, too!

His special school resources have arrived, too so the living room is chock full of boxes until we take some toys out to the soon to be epic playroom so we can put some things away. With Daddy, Abby and Mommy all having desk spaces in the house, space is tight and his bedroom is too small, so we'll have to set up a little desk for him when we recover some toy space in the house! 

This week (9 months after I first signed them up before Ollie got lymphoma in his brain and everything went off the rails), Abby and Ollie had their first virtual Kids Kicking Cancer karate class. This not for profit charitable organization gives free, safe karate lessons to kids who are undergoing or are survivors of childhood cancer and their siblings. Their motto is "Power. Peace. Purpose." and they call their students members of the "Heroes Circle." They teach breathing, visualization, relaxation and karate moves. When there is no COVID, they hold their twice a week classes in a clean, safe space where families worried about low neutrophils and catching viruses can participate with lost risk than normal classes. 

 I thought the idea was incredible before and now I know it is going to be a Godsend. It was a private class to start to help the kids get to know the moves and for Senseis Lyne and Cody to learn how best to work with Ollie, since he is their first blind student. Ollie was a bit challenging his first class because he wanted to jump right into real karate stuff, but the Senseis were incredibly patient with him. They spent extra time with Abby who had reluctantly agreed to do it for Ollie, but actually found it enjoyable and stress reducing.  We look forward to getting to know them and the program better and to eventually joining their other students in their regular class when Ollie is ready.

As a last positive anecdote, we were at CHEO today and so happy to see so many amazing nurses and technicians who have helped us over the past year. We also saw a kind volunteer we'd met in the Medical Day Unit (Oncology/Hematology) pre-COVID. She remarked about how she was happy to see Ollie and that she loved his pizza and had been following his blog. Then she told us her daughter used to be a nurse at CHEO and had been one of our nurses at Sick Kids! Her daughter was lovely and took great care of us. Since her mama is a volunteer with cancer kids and she ended up a nurse, we know she was raised to be kind and nurturing like her mother is. I love amazing parenting stories like this. It reinforces my belief that modeling, mentoring and kindness works for our kids and creates a beautiful and continuous cycle of giving. 

Wish us luck and send us prayers for Wednesday's scans. I'll share when we have news.  Thanks for being part of our (now global!) village!