The Brave Boy and Clowns at CHEO

Saturday, 30 May 2020

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!

Wednesday, 27 May 2020

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.

Saturday, 23 May 2020

Rituals and Routines

Rituals and routines are so important 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.

Wednesday, 20 May 2020

The Pain of Empathy

I just read a tweet from Canadian Blood Services about a young boy named Cameron who was a frequent recipient of blood transfusions and whom they featured on their web site last fall. He was 8 years old and just died of brain cancer. I don't know this family, but I am shattered by their loss. 
Empathy is something I've generally considered to be a beautiful, important human ability. I have always considered myself to be an empathetic person and have always been glad to see it in my children as well. On the positive side it enables you to connect with and feel deeply for put yourself in their shoes and try to understand how they feel and what they're going through. On the negative side when you're an empath and read a simple tweet like this, it stabs you in the heart. You feel so genuinely and deeply for others and wish desperately to take away their pain because if it hurts you this bad you can hardly imagine what their real pain feels like. 

I would have felt like this even before Ollie's cancer, but now every story I read like this leaves me aching for these families. It makes me want to rage at the injustice that these beautiful little innocents are dealt. It sometimes makes my faith in God and his abilities a bit shakier. 

I'll be okay tomorrow, but for this moment I am letting myself grieve for this angel I never knew. It is necessary to let the emotion out. Most days I'm great. People ask me how am I "really" doing and most days I am really okay. I am focused and my glass is half full. But some days it just hits you in unexpected waves of emotion. 

For example, this weekend while taking a short drive with Mario and Ollie to do a curbside pickup. I was sitting in the back with Ollie and he was really happy. Singing along with his favorite songs on his playlist. All songs about strength, fighting, not giving up and there he sat battling lymphoma, blind and just happily singing his little heart out about how he still has fight left in him. I got a lump in my throat and tears poured while I tried not to sob and ruin his great mood. 

It happens to Mario, too. We look at each other and have to quickly look away for fear of scaring the kids. They've seen us tear up, but sobbing we do only when they're not going to see it because we don't want them to think we don't believe we'll beat this. We will. We just have perfectly normal moments of agony and need to let them out.

For those of you who are empaths, too. We are sorry to cause you pain, but are so thankful that you are in this with us.

Fortunately, Ollie has generally been happier lately, and desperately wants to see friends his own age after seeing almost none for the last 6 months. His neutrophils and all of his blood counts are still high despite radiation, yet we know that his mental health has suffered greatly from the necessary isolation that kept him from getting sicker. 

Since we know we need to keep him motivated to get through this part and eventually a stem cell transplant, we decided to allow a couple of visits with friends he asked for whose families we know are being diligent about social distancing, hand washing and wearing masks in public.

We were grateful to dear friend Jamie (who is and manages a team of respiratory therapists at CHEO and has many times come by when we were admitted before COVID-19 for hugs or to drop food for us) and her teenage son Jaden who came by Saturday for a deck visit. It was so lovely to finally catch up with her after almost two months in Toronto and Ollie loved having a big kid pay attention to him. Their family understands very well the need to be careful since Jamie is potentially exposed every day. 

We also had a couple of visits with some of Ollie's closest friends from school (with whom we are also friends with their parents). We explained to these parents that while we are pretty confident we do not have COVID-19 (Ollie had 3 negative tests at Sick Kids because they did one each time he was admitted or in the ER), we are at the hospital daily, so we may be more of a risk to them then they are to us right now. They both showed incredible concern to keep Ollie and us safe. We agreed to deck visits with masks and hand sanitizing and minimizing touch, recognizing that Ollie desperately wanted to play Beyblades with them, too. So one day we welcomed mom Sarah, Olivia (from his class, daycare and soccer team) and Charlie. The other we were happy to have mom Sarah and friend, classmate and daycare buddy James. 

I didn't take many pics because I was just enjoying seeing him interact with peers for the first time in so long. He was so happy afterwards that despite the slight risk to everyone, I felt it was the right thing to do. How can we torture this boy with treatments and tests constantly and there not be any short-term rewards or reminders of why he wants to get well again?!

That said, with things slowly opening up again and given not everyone is choosing to wear masks and maintain that 2 metres of social distance, we know we'll have to go back to being isolated soon as the risk for cross contamination becomes greater. People will start to see other friends and family, too and each interaction multiplies our potential for risk. Plus, when he's back in remission, we plan to go back to Sick Kids for a stem cell transplant to finally give him Abby's beautiful stem cells and that will mean more months of complete isolation.

Today radiation was harder because we had appointments at CHEO with Dr. Pinto and in the Ottawa Cancer Centre's radiation clinic with Dr. Chang before his radiation session, and that agitated him. We had to stop the radiation treatment a couple of times to calm Ollie. But, we've done 6 now, so tomorrow we tip into the second half! 

A CT is now planned for Friday morning before radiation. This will confirm if the drugs and treatments are working or not. On the one hand I'm not looking forward to the stress of it and getting him to drink the orange contrast drink. On the other I am desperate to know if this in combination with his Lorlatinib is really working. Either way, we'd continue with this treatment until radiation is done next week, but it would be such a motivator to know for sure that it's all really working instead of just being hopeful and thinking that I only see improvement because we so desperately want it. 

As of today it's been exactly 182 days or 6 months since Ollie was diagnosed. Originally his treatments were going to take 6-8 months. I thought by summer he'd be well and we'd take an amazing trip somewhere as a family to celebrate. Now we may have that much more time ahead of us on his journey to get well and then some. He's being granted a wish from the Make A Wish Canada Foundation, but he's chosen a trip to Atlantis Bahamas because he loves waterslides and wants to swim with dolphins. Sadly because of COVID it might be years before we can take this trip (thankfully they give you until your 18th birthday!). 

So rather than stress about the CT (I've already had a tight neck and headache off and on for 4 days over the radiation) I'm going to let go and let God.  I have learned that obsessing about any of this does not help us to control it or feel better about it. That He is the only one who knows the real plan or outcome of any of this. So I am asking Him constantly and believing that He will gift us what we are asking for. That Ollie will survive and thrive after all of this. 

Saturday, 16 May 2020

Precision and Social Distancing

We have one week of radiation under our belts! Five down and only eight treatments left to go! 

On day two and each subsequent day this week Ollie couldn't wait to get there and get it done as quickly as possible. The days with afternoon appointments were harder because he wanted to get up, get to the hospital to get it done and hated all of the waiting around. Some days he'd wake up at 5 am and have to wait until 1 pm. It makes him very anxious and he obsesses, trying to control anything and anyone around him until he gets into radiation. Morning sessions were easier and going forward all of our appointments are morning ones, thanks to our diligent oncology coordinator rescheduling everything to hep make it easier for Ollie. 

We've had the same radiation team all week and they are pros. Each of them is great with kids, so patient and understanding, anticipating and catering to his every need. They also understand that when something works well, you just do it over and over to provide the child with much needed predictable patterns and processes. 

Ollie is no nonsense and wants to get in the machine and get the mask on as quickly as possible. Since day 2 he has literally done it all in one go. 3 minutes of treatment, 1 minute outside of the machine for out to be set up for the next one, 3 minutes in for the second treatment, 1 minute out, then 10 minutes for the final scan. He has to stay as still as a statue and does it every time. I am certain his teachers will be shocked at his ability to remain still  now since he has always been the kid who was constantly in motion. 

Sometimes he talks to us in the machine. Often he talks about Beyblades or plans he wants to make for the day. Sometimes he just sings along to his Bye Bye Lymphoma playlist (note: let us know if you have suggestions to add to this list) that we made months ago and play when we need reminders of our strength and courage. 

At times he gets impatient, but I either calm him down by taking to him while he's in the machine or he counts the seconds backwards each minute until the time is done. They always give him treats and high fives for doing such an amazing job.

Watching him get radiated is easier than I imagined. It's all very targeted. I sit in the control booth and can see the images and where they're targeting. I am not well versed enough to read the scans (yet), but am asking questions and learning. I am so indebted to the incredible team in Radiation South and to whomever invented these technologies that make this far more precise than ever. 

When we're all done, Mario comes to get us so I don't have to lift Ollie in and out of the van and risk hurting my back again. 

He's doing okay and working from home as needed (see photo below with his favourite new colleague). I am so grateful that he is able to take such an active role in Ollie's day to day care as this really balances things out for our family so that I can spend time with Abby, too. 

Until you have a critically ill or special needs child you really have no idea how challenging the simplest things can be. From helping him up and down the stairs, to assisting him to urinate or have a bowel movement (given he still can't see, his balance is off and he is fearful to do anything alone), to helping him to have a bath (he's so afraid of getting in the tub alone when he can't see, that we've bought all kinds of handles, grips and I usually get in first in my bathing suit to support him getting in and out and from behind while Mario washes him. Every little thing is an endeavor, but they are all labours of love. As he gets stronger and we figure out the blindness, it will all get easier. As he reminded me the other day, " You always say patience is a virtue, Mom."

Abby has been having a difficult time this week, too. She is stressed and wanting our attention and it is challenging because you need to put so much energy into the sick kid that you expect the well kid to just understand and wait for the attention. But anyone with kids knows they don't wait, they demand the attention now. So as usual we're struggling to find the best balance.

Ollie is still on the high dose of Dexamethasone steroids to keep the lymphoma under control until we know of the Lorlatinib drug and radiation are working. We are setting up scans next week so we hope to see that it is wiring and the Dex can start to really be weaned. He's constantly hungry and overeating on them. Trying to control his appetite or his aggression and tendency to want to control everything is almost futile. There are many battles. Some beginning early morning, so he's woken his sister with yelling a few mornings which made everyone's start horrible. We just keep breathing and trying to get past annoyances and stress.

He also has about 2 t-shirts and two pairs of shorts that he likes and gets agitated if we need to change them. While he's always been big for his age he's gained a lot of weight from the Dex and his skin shows stretch marks and thinning of the skin.

On a positive note, he is walking more and going up and down stairs now. He had a virtual physio assessment this week, so will start exercises next week and she is looking into a walker for him to build his confidence in getting around blind.

He often wants to go to the basement or deck for a "change of scenery", too.

Overall he's reacting phenomenally well to the radiation.We struggle to get him to rest he feels so well most of the time! 

One day he wanted to be in the kitchen with me and help me so he dried dishes. I've missed him being my little helper.

He's also been very upset about not seeing friends and family. We dropped some things off to a few friends last week and Ollie got to visit socially distanced from his seat in the car. This was not good enough. He wants playdates and sleepovers and Beyblade matches.

It became such an issue this week that he was begging us to have family friends over this week to do a scavenger hunt. So we arranged a socially distanced visit in the backyard (thank goodness our deck is 25' x 25'!) to enjoy some Ollie's Pizza from Gabriel Pizza (two pizzas for their family on one side of the deck and two for ours on the other). 

Masks were worn for the Scavenger hunt (prizes were Beyblades of course) to protect the immuno compromised. In the end it was  a lovely few hours for all.

Ollie even had a cat nap in.the hammock all bundled up in his cocoon.

Of course now he wants visits from his school friends, so this will be challenging to manage his expectations. We still have to keep our family safe and also to keep our dear friends safe (since Ollie and I are at the hospital daily, we are a potential risk to others if we bring something home). 

But we also have to balance that out with bringing our boy some joy where we can when we can do so safely. He hears the word no a lot and he doesn't like it anymore now than before cancer, but now we also need him to want to get well and feel like it's worth it to keep fighting the lymphoma.

So with three days off of radiation, we wish you all a very relaxing, if quieter than usual Victoria Day weekend!

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 tha...