Cancer and Contentment

Our family has long prioritized being together and having fun experiences over a big, perfect home and expensive lessons, sports participation, etc. While there are many days that I long for a perfectly organized and pristine home, I wouldn't trade our often chaotic home and time together for it. It's especially true right now, when we're home a lot and could be finishing so many home projects at the expense of missing precious time together. These last 7 months have again and again reminded us that nothing is more important than just being content together.

So we've been splashing and playing together in our giant kiddie pool, having water gun fights, Beyblade tournaments, board game nights and anything that amuses us and brings joy.

It takes me back to my own childhood when we always had a pool. First when my parents were still together, an above ground pool until I was Ollie's age and later as a teenager when my mom and stepdad put an in ground pool in. 

Abby has been having a lot of virtual playdates online and dug out her sewing machine to make some Barbie clothes with her friend Emma (with thanks to Magda-Lena for giving virtual advice).

Ollie has been doing so well with the walker and his virtual physiotherapy sessions. He worked especially hard this week for a reward. I offered him a toy and the little devil negotiated cash instead! 😄 Whatever keeps him working hard!

Abby has been so wonderful with Ollie and so patient in helping him to have fun, even if we have to modify how we normally do things to make that happen for him. I am so proud of the young woman she is becoming. 

She made a decision about where she wants to go to middle school. We have a dear friend who teaches there and she offered to connect us with the administrators to ensure that Abby is well-supported next year given our family's situation. I then got the loveliest messages from the school's resource teacher and the principal, so we are very grateful to know that Abby will continue to have caring educators around her when we cannot be with her.

In the meantime, Abby remains stressed at the idea of being physically close to those outside of our family as she fears that one of us will become sick and infect Ollie. Everyone must make the best decision that they can for themselves as Ontario continues to open up further, but we know too well the extra danger our family is in, so we'll have to continue to be extra careful as we wait and see what happens regarding COVID-19 cases. So Abby is working with the social worker to deal with her fears and we are limiting our contact as much as possible both for safety and to ease her fears.

On Tuesday we were at CHEO for the weekly bloodwork and dressing change. At the last minute, our oncologist was able to get us an appointment with Dr. O'Connor in Opthomology to check out Ollie's eyes and optic nerve. Thankfully Ollie has had no further eye pain, but has had dry eyes and discharge (which are also side effects of brain radiation), so we wanted to get that checked out.

The doctor had a beautiful bedside manner with Ollie, telling him each thing he was going to do before doing it, so Ollie was comfortable and calm. He looked at his eyes, did a dry eye test to verify if that's all it was (which appears to be the case) and told us things look as he would expect them to at this point. He gave us steroid drops if he has any further eye pain. He said he can still see that parts of the optic nerve are pale indicating damage and it makes sense that he would see light intermittently. 

Ultimately they're pretty certain now that Ollie will remain blind, or will be significantly visually impaired if he recovers any ability to see colour, light or shapes/forms. Honestly we're all okay with this. We've made our peace with it and are focused on kicking the cancer out. When you are fighting to save your child's life, his sight is so secondary in the big scheme of things. 

He's accepted it and only feels bad about it when others say it might still come back around him. He told me he feels like when they say that they will think he is less able because he can't see, but he CAN see now with his hands and his ears and even with his sense of smell. We've told him he can do anything he sets his mind to and he has. He's a smart kid and he knows what the doctors have said. HE has lived in darkness for 5 months and adapted. Now everyone else around him needs to.

On Wednesday Ollie and I did a radio interview with Sam Laprade on her Special Coverage of COVID-19 show on 1310 News. She's been following our blog and for National Blood Donor Week, she wanted to profile Ollie's need for blood products. Ollie completely stole the show and I was so proud of him and Sam was thrilled. You can listen to our interview here (we are on just after the 37 minute mark).

In the interest of moving forward, we had our first virtual lesson in Braille on Thursday with Leona from the Canadian National Institute for the Blind (CNIB). 

She had Ollie use half of an egg carton and 6 ping pong balls as well as a die to learn the dot system for Braille. She made a game out of it and naturally, Ollie won. 🏆 Next week we'll learn how to start putting the dots together to make letters. 

We've applied for a Buddy Dog through the CNIB which prepares kids to eventually have a guide dog. The Buddy Dogs are trained at the CNIB's facility in Carleton Place and help kids to get comfortable with dogs and starting to use them as their eyes. There's a waiting list, so it'll likely be a while, which is good as we want to get that stem cell transplant first. Most importantly Ollie is thrilled about the idea and it is really motivating him to embrace his blindness and learn to do things independently so that he can get the service dog.

We also got a call that afternoon from the Vision Itinerant team at the Ottawa Carleton District School Board. The Ottawa Catholic School Board (OCSB) contracts the OCDSB's team to provide services to blind and visually impaired kids like Ollie. The CNIB helped us to make contact so we can start the ball rolling on getting resources and an itinerant teacher for Ollie beginning this fall. He'd still have his regular teacher in his regular class at his current school, but he'd also have an itinerant teacher to help him with Braille and assistance in the class for 50% of the day and an educational assistant for the rest of the day. The Board will provide him with technology and all resources that he'll need for school and home. The best part is that Ollie's rights under the Charter of Rights and Freedoms are guaranteed as he cannot get an education without this accommodation, so they cannot be cut or taken away. 

I have never been so grateful to be Canadian. No medical bills and my special needs child will still get resources and an excellent education without us needing to send him to a special school.

Also on Thursday our friends the Navas stopped by to drop something off and it turned into an impromptu socially distanced water gun fight. Ollie was so thrilled and was really good at using his ears as his eyes. Each time the girls squealed he easily pinpointed their location and hit them again. He was so mischievous and gleeful that it made everyone happy. 

Thursday was also my birthday, so as usual I spent it with my beautiful family who all made it special. Ollie made me some jewellery with a bit of help from his sister. Abby bought me things with her own allowance money this year and was way too generous. My favorite of her gifts was a beautiful little book that she filled in all about me. It made me tear up. 

Mario also bought me lovely gifts, aided heavily by Abby who insisted on running the show this year. 

Between them and dear friends who dropped little thoughtful gifts by and the many calls and messages that I got yesterday, it was a beautiful day and I was so grateful for the love and good wishes. Pretty sure you all know what I wished for...

Today was another good day with a chat online with his friend Henry and a Google Meet with his class where he was thrilled to answer their questions about his treatments and to share his latest news. He then played Beyblades with Daddy on the deck for a while. 

We got ice cream cones later and had corn on the cob with dinner on the deck (at Ollie's request despite how cool it was), could the day have been any better?!

In the blink of an eye...

I can hardly believe it's already been a week since I last posted! So much and yet so little has happened since then.

We've spent a lot of time on the deck as Ollie loves it. The photo above was a bit crazy though as it was one of those really cold days this week and we had Ollie all wrapped up in blankets while wearing warm clothes and we started the fire to stay warm!

Ollie had a visit to CHEO's Medical Day Unit (MDU) on Tuesday and they added a Friday visit since Tuesday his hemoglobin and platelets were low and they wanted to check if he needed a transfusion before the weekend (he didn't!). His dressing change on Tuesday was likely his calmest ever. Since we've stopped his morning dose of Olanzapine (anxiety med), it was all on his own steam and self-regulated. Impressive.

He'd been having some eye discharge and starting to see light again at night in a dark room when lights are turned on. A sign that his optic nerve is no longer suppressed by the lymphoma (we think). Also a possible side effect of the radiation. Unfortunately when we got home Tuesday afternoon, Ollie had terrible eye pain that required Tylenol and an ice pack under his eye mask. He slept a bit and still had it when he woke, but it did go away that evening. The next morning it was the right eye, although less painful and short-lived. 

This was scary for us because when he last relapsed in Toronto it was headaches and eye pain. The doctor checked him out Friday and thought everything seemed okay, but reminded us to let them know if he has any headaches. They also asked for an opthomology consult soon for his eyes and nerve to be rescanned.

Our friends Kim, Trevor, Ewan and Jackson kindly dropped by some specially ordered rare Beyblades for Ollie while he was feeling unwell and that really perked him up!

By late in the week he was in great form and happy, although getting a bit bored given we now have more time at home. So Daddy helped to set up the Ipad that Candlelighters provided him with and I downloaded some accessibility tools and apps for the blind. There are games that you can play even without sight! The first he tried was called, "Blindfold Racer". Essentially using the Ipad like a steering wheel and wearing his wireless headphones, he is taken through a race course where he's driving between two fences and gets audio cues to tell him where he is. If he gets too close to the left fence, it beeps in his left ear and he has to steer right and vice versa. There are also obstacles like chickens and cows that cluck or moo in the ear closest to them. The first time he competed a level he excitedly shouted, "I DID IT!!!" He was so proud to be able to do something he always loved before he went blind. I teared up and said a silent player of gratitude for that video game developer. There's something I never thought I'd do!

He also joined his and the other two grade two classes in an online Google Meet on Thursday and was thrilled to be welcomed and included. 

Abby's been keeping busy with personal projects like tie-dying everything white that we own. 😆 She's still doing some schoolwork each day, but has been kinder to herself since her teachers have told her there is zero pressure from them. Her virtual leaving ceremony is coming up June 19 and we are all sad that her last year has gone this way.

On Friday Ollie's lovely physiotherapist Allison came to the house with Shellie from the equipment company Motion to fit him up for a walker. We don't think he'll need this for long, but feel this will give him the confidence to be more mobile and independent. He desperately wants to be more of both. Another day when friend Sean dropped thoughtful gifts by and I was on the porch talking to him as he stood on the sidewalk, Ollie appeared at the front door unassisted. Mario was working at the dining room table and hadn't heard him get up and come to the door. While we're happy he wants to get up and go, it's frightening too as he's still wobbley with his balance not quite right yet. Again it's a lot like when your baby takes their first steps and you're so excited and scared all at the same time. So at least with the walker he will be supported.

Chewbacca has become Ollie's frequent lounging buddy. 

At first this made me nervous, too as animals have an innate sense of when people are sick and need help. A month ago I think that was true. Now I think they've further bonded and Chewy just loves to snuggle. Ollie is pretty thrilled with the arrangement.

As for me, I'm trying to get things done, like go through the kids clothes and give away anything that doesn't fit. Organizing my own closet to do same...doing paperwork for insurance claims for medications and equipment...sending notes of gratitude to so many kind people who do beautiful things for us regularly. 

And today I donated blood. This is something I have been wanting to do for a while but have not felt up to physically or mentally. It is also something tangible I can do while we wait for his MRI to happen the week of June 22. It took just over an hour, was beautifully organized and socially distanced and it was steady. When your child relies on the availability of blood products for random transfusions you have a deep appreciation of the importance of these donations. I've been a donor in the past, but had issues with iron and often couldn't donate. Thankfully all of the supplements and immuno-boosters I've taken for 7 months have solved that problem (with thanks to my friend and Naturopathic Doctor, Colleen McQuarrie at Ottawa Integrative Health Centre for keeping me well with her good advice).

Finally, the kids were asking for the kiddie pool I gave away several summers ago and begged for a new one, so we upgraded their idea a bit. It's a bit crazy in our small backyard, but they need entertainment and we need something safe for Ollie to play in (lakes, the river, etc. are out for him given bacteria), so a 12' by 30" pool with filter will be our fun this summer. And it will be worth any joy it brings them. Hopefully they won't get hypothermia, too!

Overall a good week, with Ollie mainly feeling good and being his silly chatty self. He's all set to enjoy summer with his pool and waterguns (loved it so much he napped with it!). He also has a birthday coming up at the end of the month, so we're gearing up for a few good and fun weeks!

Even Warriors Need Rest

Radiation is finished! Thursday was his last session and Ollie was so tired that he slept through most of it. Until the last 11 seconds that is, when the machine went down. Unfortunately it takes 7 minutes for the machine to boot back up and Ollie was stuck in the machine. The team in Radiation South was amazing. Ben and Riane went in immediately to calm Ollie and make him comfortable so he wouldn't move in order to finish the treatment without having to do the whole 10 minutes again. You see it has to be precise, so if he moved they'd need to re-scan him for 3 minutes to get a picture of his position and then calibrate the machine to do the 10 minute treatment in exactly the right places again.

Ollie was stressed and asking them to start the machine NOW. Ben was incredible, going to the back of the machine to reach Ollie's head, rubbing his head gently and talking to him about every step the machine was taking and what would come next. He also took the mask off so he'd feel more comfortable since the last bit was at the bottom of his spine and he knew Ollie was feeling caged. It was evident that Ben has a son close in age to Ollie and that he intuitively understood how scary and frustrating this would be for a 7 year old. Riane gently touched his legs while reminding him not to move. I did same on the other side. Julie was in the booth talking to Ollie over the speaker as each step was happening with the machine. 

They got the machine up, we told Ollie we'd run out and then run back in after 11 seconds and went to the booth. Naturally the machine went down again! So Ben counted down 11 seconds for Ollie on the speaker and we got him out. He did this to keep him calm and not stress him about the treatment not finishing. Ben then explained to me that at the bottom of the treatment there is about 1 cm of air/nothing and we'd be at that point anyways, so there was no effect from not finishing 11 seconds and it was not worth trying again and traumatizing Ollie further.

Then the whole team (including Danika who had not been with us that day) came in, gave Ollie a gift of Hot Wheels cars, chocolate and gummy bears and made a huge deal over how great he was at radiation, that he was all done and how much they'd miss working with him, but that they were glad he was going to get well and not need them anymore. I was teary and thanked them profusely and of course I forgot to get a picture! 

They also let him keep his radiation mask! Mario was super impressed by it. Abby was awed and a bit horrified at the idea that it held Ollie on the table so he was trapped during his treatments. He plans to mount it to the wall in his room. Every boy's dream! LOL

The last few days have been pretty relaxed. Ollie's been more tired thanks to cumulative fatigue from radiation so we've been encouraging him to rest and listen to his body. He's also had his white blood cell count, platelets and neutrophils go down significantly, although he's still slightly above neutropenic. Given this we have to take it easy and stay away from even socially distanced visits for now. Fortunately Ollie seems to get this and is not fighting us even though we know he misses seeing people. We're all pretty tired and feeling the effects of three weeks of constant worry due to daily appointments, so trying to rest.

Friday Ollie had a virtual physio appointment online. He worked really hard and showed his physio Allison how much stronger he's getting and his new Fitbit for kids (thanks Gamma and Bumpa) that counts his daily steps. 

Abby has spent a lot of time entertaining Ollie over the last few days. One day she let him do her makeup. 

He did pretty well for a blind guy and even let her do his. 

One day he may regret letting me take these pics! 

Then they put on hula dresses and leis and danced around laughing hysterically. It reminded me of when they were little and Ollie would let Abby dress him up like a princess. He was always a good sport about it and was just thrilled that she paid attention to him.

Hearing them laugh together makes me happier than I've been in 7 months. And when they act silly and laugh more, so do Mario and I. Laugher really is contagious.

They also did some TikTok videos together. 

He just wants to be wherever we all are right now. Especially near his sister. 

Abby has been having bad dreams lately and having trouble sleeping other nights. On Friday she met with the CHEO Social Worker, Sherley, who was very helpful. We also have the option of seeing the child psychologist if need be, too. Thankfully my children know that mental health is super important and there is no shame in seeing a therapist when you need to talk and work some fears out. 

Her lovely teacher also contacted her to remind her that her wellness is most important and she shouldn't put added pressure on herself nor worry about September as she is a bright girl and a strong student and will be fine even if she needs to take this time off from school work. We are so very blessed with the beautiful souls who teach our children. 

Even Ollie has realized that whenever he goes back to school his big sister will no longer go there and he was very sad about this. I told him when he starts high school Abby will be in her last year, so they'll have another year in school together again in future.

He's losing the hair that just started to grow back. A side effect of radiation...

It doesn't bother him, though as he knows it will grow back again in future.

Abby finally spent some of her birthday money on an Ikea vanity table. It arrived today and she had her first Ikea assembly experience. Real life lessons during the pandemic that will prepare her for life on her own one day. LOL

So we're playing Beyblades and Bakugan and trying to get organized after being away so much over the last 6 months. All is well in our world for now.

I'll likely write a little less over the next month unless there's real news to share. I have a few ideas for blog posts I've wanted to write but not had time to given how rapidly things have changed in our world over the last months, so I'll likely write a few of those to stay in touch. Stay tuned, enjoy the beginning of summer and I hope we'll have good news to share soon!

Have Faith and Cautious Optimism

Each day brings new determination and more strength. Ollie is doing his daily physio exercises and walking more. He is no longer carried anywhere and goes up and down the stairs on his own steam with some minor support from Mom or Dad. 

Today we got him a Fitbit for kids as his physiotherapist suggested we chart his steps daily to show his progress and challenge him to do a bit more each day. He's thrilled to have one like his sister! 

He walks to the end of the block and back now with Daddy without his wheelchair. A month ago he could barely walk 8 feet to the bathroom.

When he's resting Chewbacca or Minou are usually lying with him as if to calm him or give him strength somehow. 

Ollie and I started growing vegetables and flowers together last year inspired by his interest in the school's growing activities (growing tower, gardens etc.) and our participation in the school's courtyard beatification efforts last summer.  

So naturally there was no question that we'd plant again this year. Ollie was so proud of his tomatoes and lettuce last year that he's psyched to do it again this year. 

Last night he wanted to play board games and started listing off games in the basement he felt he could still play easily even though he's blind. He still beat me at Rock 'Em Sock 'Em, but I squeaked out a narrow win in Hungry Hungry Hippo! 

Afterwards he begged to go out on the deck to swing in the hammock, so he and I did. He's become quite a conversationalist again and I enjoyed just listening to him tell stories and explain his views on things. 

Abby's been having a few really emotional days. In this pic after she was upset Ollie asked her if she needed a hug. Heart melting...

She's been trying to work on a potential valedictorian speech (her classmates have the option to submit one for consideration before the teachers choose) and it's really made the end of her year and her time at St. George real for her. It's such a sad way to end a beautiful 8 years and she is struggling to process that while missing friends and worrying about her brother. She's struggling to stay engaged in school, not because her teachers aren't doing an amazing job, but because given everything she's been through this year, sometimes it just seems so unimportant to do math when your brother is fighting for his life. 

So I war between pushing her to stay motivated and simply letting her let go and have less stress. Problem is she's she's so conscientious that she feels guilty if she's not engaging, so we're still trying. 

Today the oncologist told us that the CT from last week confirmed that Oliver does not have any cancer in his body outside of his brain. This is very good news. Unfortunately we can't know what is really happening in his brain for 4-6 weeks after radiation. At that point his brain will have calmed down enough from radiation to allow them to see if it and the drugs have worked.

That said, she said it was a very good sign that Ollie has had an improved mood and energy levels in recent weeks and these likely indicate that the treatments are working. 

As I write this lying next to Oliver who is sleeping he just laughed out loud while dreaming! 😊

Mario is nervous about saying or believing that he is really better until we have proof. So we've all agreed that we have faith and will put all of our energy into that faith that God is making him well. 

Starting next week we'll have only one appointment at CHEO per week to get his dressing changed, bloodwork done and overall check ups. The rest of the time we get to just enjoy the summer and as long as he stays well we get to be home together. In 4-6 weeks we'll get that brain scan and hopefully see that he's in remission. Even he's started talking like as soon as he's well again we're going back to Toronto to get his stem cell transplant. This is a far cry from the depressed boy who couldn't wait to leave Toronto a month ago and said he was never going back for stem cells. 

There's a tendency not to want to celebrate the little victories for fear of whatever might be lurking around the corner on the cancer slaying quest, but life is short and you need to feel the joy even if temporarily. So tonight we informally celebrated with a Beyblade tournament with marshmallows and Jiffy Pop on the deck. We remain cautiously optimistic and committed to letting our faith get us through the next 4-6 weeks as we wait more.

Rituals and Routines

Rituals and routines are so important to kids...to most of us, really. We all crave predictable patterns in our lives daily. The smallest deviation can be the biggest deal to children or anyone who resists change. In this age of COVID-19 when everything has changed, we crave these rituals and routines and even seek to modify them as needed to maintain some sense of normalcy.

The last few days have been challenging, but also promising. While Ollie has been apprehensive of his medical procedures and tests, he's also been eager and happy to get them over with. He's wrestled with his anxiety over and over and come out the victor (with some help from his family of course). We use the same methods repeatedly now to manage the anxiety:

- Touch to sooth (rubbing his head, holding his hand, rubbing his back);

- Calming voice reminding him everything is okay and we're right here with him;

- Playing a music playlist that he loves and knows so well;

- Rewatching the same tv series on repeat so he knows what comes next;

- Deep breathing techniques (he often reminds me to take a deep breath, too);

- Counting down whatever time we have left until the scary thing happens and just focusing on the numbers; 

- Distractions like listing Beyblades or Lego sets or anything else that he's interested in with many versions.

Once the stressful things are over, he's our boy again...lately more mischievous, grinning, telling jokes, laughing out loud for the first time since March (sweetest sound ever) and generally trying to trick us into doing his bidding constantly. 

We bought this hammock the first time I visited Colombia with Mario when we were engaged. Who knew it would wrap our children in comfort during the most difficult time in our lives?!

Thursday night we had dinner on the deck together at Ollie's request. While eating he asked if we could have a fire in the fire table after. We said, why not? As we are eating he suddenly asked, "Wait...Will I be able to SEE the fire?!" When we asked if he could see anything but darkness now he said no, and we gently told him then he wouldn't be able to see the flames, but he'd feel their warmth. He was very sad after that and lost all interest in the fire. This horrible disease robs so much joy. We did try to explain that maybe after the lymphoma were out of his brain he might be able to see some light again like he could see before, but that was little consolation for him. He asked to go to bed and never mentioned the fire again. 😭

Abby and Mario stayed up and roasted marshmallows instead while I read to Ollie from his latest favourite book (from the Stink Moody series). This too is a ritual. We have been reading together every night since he was a newborn and would snuggle in with Abby and I while we read together each night until she started reading chapter books on her own. We stopped reading nightly when he got so sick at CHEO and we couldn't predict sleeping patterns. This afternoon he asked me to read more and said he loves it when I read to him and it's his favourite. 💕

Abby and Daddy have had more time together in the last 6 months and developed their own rituals and routines, too. So they were content to be together at the fire while Ollie and I read and later to watch a tv series together as they started doing 6 months ago when Ollie and I were at CHEO for days and weeks at a time.

As much as they crave stability, sometimes Ollie changes the routine himself and it leaves me guessing. Today for example, he decided to guzzle his contrast drink down in moments. Normally this is an agonizing, sip by sip process where by the end he's nauseous from gagging and stressing about it. He sucked back not just one, but two cups in moments. Then he wanted then to take him for CT immediately so I had to play a bunch of tricks to try to distract him until we could go to CT almost two hours later.

While we waited to be taken in he tried several tactics to get them to come and get him right away including yelling for them to do so. This is the not so fun part of my new job. My "coworker" can be rude and demanding when he's scared. So I walked the hall up and down with his wheelchair and told him about the amazing CT technician who had come in at midnight on a Saturday when he was in ICU and we thought he was having a stroke. I explained how patient and kind she was to wake up, come in after hours and treat him so gently then and this was why we couldn't shout at people to bring him in now and had to appreciate how hard people at CHEO work every day to get kids well. He calmed down after that. He is a gentle soul under the steroids and the fear.

Right now an important ritual that seems to represent wellness and his old life is Beyblading. When they had to access his PICC line to put additional contrast in, he was very upset because they'd ruined the perfect cover positioning for Beyblading! So he asked if I could fix it and Dad could bring some Beys to the hospital to test it before he went to radiation.  

What's 10 more minutes when you're already late?' So we met Dad and Abby in the parking lot, had a few quick battles (all of which he won, of course) and verified that yes, he can still Beyblade like a champ.

Off we went to radiation. He was so tired that for the first time he slept through the scans and treatment.

At home later he was much happier to be done all of the hard stuff. 

So now we wait for results. This in itself has become its own routine over the last 6 months.Hopefully by Monday we should have results.

So we'll practice patience and pray a lot this weekend, but in the meantime I'm going to take those laugh out loud and grinning moments as a heaven sent sign that this is working. Just like I take the literal sign at Canadian Blood Services that we pass on the way to Hospital daily that says, "Stem Cells for Life" as a sign that we are on the right path again. 

God bless you all and have a lovely weekend! I will share when we have news. Love each other and don't take the grins or belly laughs for granted.