+100 Days Post Stem Cell Transplant

Wednesday was +100 days post stem cell transplant and scans day. We were at CHEO from 12:45 pm to 6:15pm. Ollie was incredible. I think it might have been his best day outpatient at CHEO ever. 

 He is now a totally calm and cool pro at getting pokes and didn't stress at all about getting his poke to have the IV inserted for the CT and MRI contrasts. 

He had been concerned about drinking the contrast for the CT, but thankfully I had a triple Pushpop sucker in his bag and he took licks in between and got it all down no problem. That's a pro-tip. Always have suckers, ring pops, etc. when you take your kid for tests in hospital. Thank goodness I had left some in our bag!

His ECG was quick and uneventful.

We got Llama Llama Blue Pajamas out to help with the scans. He's been in every scan Ollie has ever had. Most internally photographed Llama ever! 😜

CT went so great! We had two of our favourite imaging helpers in Sarah (the tech) and Jean (the nurse). Both know Ollie from so many previous scans and were happy to see Llama and talk about Ollie's Pizza. As always I was thankful for these amazing women who are so patient and kind. 

We bumped into Jamie at CHEO after the CT (we always seem to have radar and come together by happenstance often) and she had a few minutes to come back to MDU and hang out with us between meetings. She marveled at the difference in Ollie (last she really saw him was in June pre-transplant) and couldn't get over his returning energy level.

The MRI was backed up due to an unexpected trauma, so we waited an extra 35 minutes before we went in. Normally Ollie would have been so upset by this, but he took it into stride, only asking a few times when they were coming. When they came to get him, wouldn't you know it, we had the same technician that we had at our very first MRI at CHEO last year in November 1st. Complete deja vu.

They're taking extra COVID precautions to keep the MRI safe and clean, so he was completely PPE-ed and thought it was funny. 

I opted to sit in the MRI room with him as I had the first time and not since (Mario did his last MRI with him at Sick Kids and for all of the other MRIs he was sedated so they didn't allow parents in). I was stressed, but didn't realize how triggering this would be. From the moment I sat down in the hard red plastic chair and donned the red and black ear protectors, I felt anxious. Ollie appeared cool as a cucumber. 

The minute the machine started banging I could feel my heart begin to beat faster and escalate with each series of noises. I started to hold my breath and feel overwhelmed. Thankfully at that moment I remembered the words sent by my therapist in an email that morning. "Please try to exhale and stick to the present moment as much as possible." I dragged myself back from the panicked feeling I had in his first scan when we were so stressed and didn't know what he had, but knew it didn't look good. I took deep breaths and reminded myself that we got through it all and we're okay. That today was just a formality to confirm that he is as well as we can see he is.

It was a long hour and since I had to leave my metal watch and my phone in a locker, I had no idea how much time has passed. No clock in there, either!  Ollie was a champ. In about the last 12 minutes (3 scans of about 4 minutes each passed) Ollie asked loudly when he'd be done. Then he continued to be calm and still for the last scans, even when they came in to inject the dye in his IV. I remember vividly him freaking out that first time. 

In fact a few minutes later when he was done, I told the technician and her colleague about that first time and how kind she had been to Ollie when he freaked out, giving him a second chance to redo the scans and how that had shaped how we approached tests all year. Then Ollie told her about his Ollie Pizza and turns out she lives next door to the Hanna family who owns Gabriel Pizza! I love that about Ottawa. In a city of a million people you can still have so many people in common and so few degrees of separation. 

That was it for our day. Because he was amazing, he had been allowed to choose a new Lego set in the gift shop. He loves going there because truly it is the only 

store he's been allowed to shop in physically in a year. A kid who hated shopping with me before now wishes he could go into ANY store with me.

Now nothing left to do but wait for results. Our oncologist knows how much Ollie hates waiting and asked if okay as usual to call us with results, which was great. Last night Ollie was concerned about the results. I told him we'd already kicked cancer out twice this year with remissions and while I sincerely felt that he was well and desperately hoped we'd never have to battle cancer again, we'd fight it as many times as we had to in order to get him well and keep him with us. We fight as one. That reassured him and we agreed to just try to have a good day today.

And it was a good day. Ollie's Vision Itinerant teacher had arranged for him to be online with three other boys (all 8 and in grade 3) who were also part of the blind and low vision program. Ollie was so happy to meet kids like him. We had chatted with the Vision Itinerant Team Lead back in June to plan Ollie's return to school with this program, so Ollie was familiar with her already. She did a terrific job taking the boys through a story and tactile craft. She wove in some Braille and knowing Ollie couldn't yet read a lot in Braille, she had him type out the first letter of each word in Braille and praised him at always knowing the right dots for each letter considering he'd just learned Braille this summer. He was beyond thrilled. At the end he enthusiastically agreed that the group should do this again soon. He rarely gets this excited about anything school related. Connecting with kids like him was so good for his mental health.

This afternoon the kids had their second private session with Kids Kicking Cancer. Senseis Lyne and Cody were so responsive to his needs. They knew last time he really wanted to do real karate moves, so they started with stretches, telling the kids that you always stretch before a fight.

We cracked up at Chewbacca the cat joining the stretching...he seemed to be hanging on Sensei Cody's every word! 😄

When Sensei Cody realized Ollie was getting confused about a move and couldn't keep up, he suggested Ollie lead the count. This was so perfect as it made Ollie feel powerful instead of weak and slow. His energy and motion is coming back but some things are still hard for him. This made him set the pace and because of it, he even pushed himself to do more.

Ollie finally got to do stances and punches. He was so thrilled and proud of himself. He was elated to do the karate yells, too! 😄

For safe sparring, Sensei asked me to get a pillow. My brilliant silly boy suggested we bring the enormous bear he was given in hospital by the staff of the Calendar Club down instead. The bear has never been given a name, but Sensei Lyne insisted that an opponent needed a name, so he became Tom the Bear. The kids had fun taking turns sparring with Tom safely. 

The final breathing and relaxation exercise that Sensei Lyne took them through was calming and cleansing. I could see the tension leaving both kids and by extension, I felt calmer. 

The timing could not have been better since right after class I got the call from Dr. Brianna (Empringham). She explained that they had compared his scans from relapse in January and April and confirmed that the MRI looked better than his June remission scan. CLEAR. In fact they can see that the inflammation in his optic nerves had gone way down, although there was still a bit detected. She explained that they'd done the same with his CT scan as well. 

Only issue in his CT was the hip osteopaenia that they already knew from his bone density test last week. They'll do an x-ray of his pelvis on Monday and we're seeing the bone specialist and endocrinologist next week anyways to formulate a plan to improve this. 

Otherwise, scans were CLEAR.

COMPLETE REMISSION. 

ALLELUJAH!

Shortly thereafter, generous friend Tara (and Ollie's friend and classmate Will's mom) dropped by and left Suzy Q doughnuts on our porch, knowing we were waiting on results and they turned out to be Ollie's "victory doughnuts" as he dubbed them. Delicious victory!

 After dinner (of what else but Ollie Pizza from Gabriel Pizza?!), we finally carved our huge pumpkins chosen at the Parkdale Market this week (too risky for us to brave a pumpkin patch this year). We put on Halloween tunes and danced and sang while carving.

We're obviously not going out this year (couldn't really have even without COVID), but rituals and traditions are important and we cannot skip things just because things aren't normal (boy did we learn that over the past year).

This was the first real year that Ollie was big enough to do much of it himself. My heart sang that his blindness didn't deter his joy for it this year. He scooped goop vigorously and happily. 

Abby and Daddy worked on hers. Mario was excited to use the new pumpkin carving drill I bought super on sale after Halloween this year. LOL

Ollie explained in detail how he wanted his scary pumpkin to look. He helped me cut and took out the carved pieces. He felt each cut after and declared it perfectly spooky. 

Abby did the goop scooping and design, but left the carving to Daddy. Their final result was great.

Just as we were finishing up, M-F and Stephen stopped by and insisted we all come out for a distanced porch visit. We had texted them as well as family add a few close friends who have been there on this journey with us every step of the way, so they came with drinks to toast our good fortune and Ollie's health. 

We are feeling so very blessed and thankful. It's been a long and often agonizing road, but we're finally on the healing path of wellness. We're certainly not done and Ollie will continue to be monitored weekly at CHEO over the next few months, but now we know definitively that it is possible to keep him in remission for longer than a few weeks and that his system has truly been reset by the transplant. 

Nevertheless, cancer is a lifelong scourge in many ways with its many side effects (some that we may not see for years) and the possibility that it could always come back. We know families who have had the stem cell transplant and still end up relapsing. So Ollie continues on the one immunosuppressants and his Lorlatinib as a maintenance drug, likely until a year post transplant. 

We'll cross every bridge as we come to them. Please let our future path be free of major bridges. In the meantime we will just try to live our best life with gratitude for the incredible gift of keeping our son that God, science and an enormous amount of love and kindness from all of you have given us. 

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!

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. 

Motivation and Rewards

What motivates you to do the hardest things? Is it the satisfaction of accomplishing a goal? Praise and admiration from others when you succeed? Attaining some material thing that you desire?

Motivation is different for each and every one of us depending on what we need to do, overcome or accomplish. Sadly there's no recipe for motivating someone to get through cancer or adapting to blindness, especially a kid. That's something we've grappled with from the start of Ollie's Anaplastic Large Cell Lymphoma.  HOW do we get this determined kid to do all of the hard things and keep going to tackle the next hard thing? And there have been way more hard things than I ever imagined possible.  

Through trial and error we have learned a few things along the way about how to motivate our boy to go through the hell he has had to in order to survive. Mario, Abby and I didn't need more motivation than the fear of losing our Ollie and the knowledge that if we didn't do all of the hard things it took to help him beat cancer he wouldn't survive. He was our constant motivation and the biggest reward at the end.

Rewards have always motivated Ollie. He likes to compete and win. He likes to collect things and become an expert in the things he collects. His favourite foods can stimulate him to get things done. And so, while I hate the idea of spending money on things we don't really need, we honestly needed to buy more Beyblades than I ever imagined possible. He had a collection of about 40 pre-cancer and now has a collection of 240 to give you a sense of how many hard things we have had to motivate him to do this year. We've also eaten more Gabriel Pizza and Merry Dairy ice cream than our bodies likely appreciated (although it was all yummy!). 

Ollie is working with the Vision Loss Rehab team to master his cane. Jennifer is an amazing and patient teacher. Ollie can't wait to walk and see how far he can get. We even walked at the hospital this week! Earlier this week with the enticement of a pint of Merry Dairy ice cream at the end, he walked 6 blocks there and 6 blocks back (the last two holding my arm as fatigue had set in at 10 blocks since its the farthest he's walked since January when he had lymphoma in his brain and went blind). Twelve blocks! 

We also discovered that although Ollie hasn't mentioned it since before transplant, he can see shadows and sometimes lights glowing again. When he was working with Jennifer as she kept trying to put obstacles in his path for his cane to find, he told us he could see which side she was putting it on because he could see her shadow moving! The ophthalmologist at CHEO and Sick Kids told us that while his optic nerves are severely damaged and irreparable, as the inflammation went down and he stopped taking high dose steroids, he may be able to see shadows and forms on good days. Unfortunately the optic nerve is one of the only nerves on your body that cannot yet be repaired, but this does help him to protect himself a bit better. 

We are grateful to Marlene and her team at the Merry Dairy in our neighborhood for the enticing treats that are motivating him to get moving. In fact we've been there three times this week...

It was cold today, but we were eating ice cream and grateful for it because it makes our warrior want to get moving and stronger. We'll start our diets when the snow flies I guess! 😄

We got a new balance ball chair last week and he's loving it. Thanks to Stacey who uses one in our office, which gave me the idea for Ollie to use it for online schooling! His balance and strength in the past week has improved exponentially and his physiotherapist is astounded at his improvement. He even insisted on pumping up the ball when we were assembling it!

Last weekend dear friends Andrew and MJ brought by a bunch of gently loved clothes that their kids were done with. For Ollie who hasn't been in a store of any kind in a year, it was like we brought the store to him! 

He loves skateboarding, so he was thrilled to find so many cool clothes from Zoo York and gently used Vans shoes since he'd outgrown his two skateboarding pairs. 

He was pretty thrilled about the Vans high tops and honestly these shoes have motivated him to walk a bit farther each day! 

He also had some fun trying on some silly onesies! Mario was like a kid dressing up a doll! LOL

All of this excitement tuckers a new stem cell recipient out...Chewbacca is always happy to keep our little napper company! 😄

When he wakes he's hungry and thirsty...he's now determined to get much of his own stuff when hungry. I live in paranoia of pickle jars tumbling out and smashing his toes, but he's got to learn again sometime.

Lately he always wants to prove that he can still do normal stuff. When his sister was (as usual) trying to get out of chores, Ollie begged to be able to do them. So I let him Swiffer mop the floors on one level, all the while feeling I was extorting the poor little blind, former cancer kid. Meanwhile he was fleecing ME as he convinced me to pay him extra for every one of Abby's chores he does. 😂

But he was so proud when it was done and with a bit of instruction did a pretty good job. Also we know that our job as parents now that he's blind is the same as it was before: to prepare him to live a good, kind, independent life, able to take care of himself and a family of his own one day.

Things are going really well with his vision itinerant teacher now that she's making many tasks a game or competition for him. He was speed skip counting against his earlier times today and then using blocks to 3D graph and compare his progress. Then she read him a chapter from the latest book of his favourite series (The Bad Guys) and asked him to use Lego to build what he thought the mad science lab in it would look like. We all helped a bit (which his teacher said was okay) and he so enjoyed working with us and using his hands to create a 3D picture since he can no longer draw easily since he can't see what he's putting on the page.

As for me, I've had two sessions with my new psychotherapist and it feels good when she tells me how normal for cancer families and especially caregivers all of my seemingly bizarre emotions are right now. 

I am spending a lot of time on mundane admin stuff like getting insurance companies to send me pre-authorization forms for new meds, filing a backlog of insurance claims, getting income tax docs ready to finally file from 2019 (CRA was very understanding given how the past months have gone for us), and generally being Ollie's admin assistant and scribe. 

I did stop and finally take my selfie with the literal and proverbial sign that kept me going for months after his last relapse as we trekked back and forth from the CHEO during radiation and the many checkups and tests as we waited for remission as the green light (or really the teal light as evidenced in the sign above) to go back to Toronto for stem cell transplant. 

I am eternally grateful to all donors and potential donors of all blood products and stem cells. I am donating blood this weekend for Thanksgiving 1. In memory of my grandfather who passed 30 years ago this weekend from cancer;

2. In honour of Ollie; 

3. As thanks for all of the generous souls who have donated blood and plasma and saved him so many times this year;

4. To pay it forward and sad someone else's kid the way that others helped to save mine. 

If like us, you're not seeing family this weekend to keep everyone safe with COVID cases on the rise, please consider making an appointment to give blood, too. Think of Ollie and so many brave souls like him who need your donation to stay with families who love them. Give thanks while doing so for your many blessings, especially your health and loved ones. I have never been so grateful for mine.

I leave you with Ollie's list of things he's thankful for this year (Mommy was his scribe so excuse the poor printing). I find it fascinating that beating cancer was last on his list as it's one of the first on mine this year. Happy Thanksgiving to all and stay safe! Love from all of us!