One Year Reflection by Ollie

Today is my one year anniversary of my diagnosis. I'm feeling kind of stressed today. 

I got frustrated, mad and sad trying to do my schoolwork today that felt too hard. And then I cried a little and it was okay. The crying sometimes makes things feel better.

I loved getting new Beyblades this year. They helped me get through all of the needles and scary stuff. The hardest part of the past year was really needles and dressing changes.

I don't feel scared anymore when I have to go to CHEO. This is because I learned to take deep breaths and calm myself down when I get needles. 

I'm okay with my blindness now. It made me feel scared and mad at first that I couldn't see. I just decided to accept that I'm going to be blind. I'm still the same even though I'm blind. So far there's not really anything I can't do.

I want to say thank you to everybody who got me through this. Thanks for all of your help and kindness. And thank you for all of the gifts.

Cancer's ass has been kicked (this is the one bad word my dad let me use this year)!

(Note from Dawn that this is a transcript of exactly what Ollie told me he wanted to say.)

Blessedly easy

Wow! A week has flown by and I haven't written anything! I missed it! 

Last Thursday Ollie had his surgery to remove the PICC (central) line. Everything went well, but it was surreal to be back there. This is where Ollie had his biopsy last November 11th (giving new meaning to Remembrance Day for us forever). Same exam room, same lovely and kind nurse, Bonnie (who could hardly believe it's been almost a year!), same anesthesiologist. Ollie took it all into stride and I was the one who had to do deep breathing to keep my (assumed) PTSD under control. 

They put Emla cream on each of his hands so that when he was asleep and they put the IV in it wouldn't hurt and his veins would be more open.

We were in a closed isolation room while waiting to go into surgery for "preventative isolation" since he's now post stem cell transplant. He actually slept for the last hour before surgery and refused the extra calming drugs before going into the OR since he told them he was already calm and sleepy. 

Surgery itself was quick and easy. Less than 20 minutes after a 2.5 hour wait to get in. Only little glitch was they called me into recovery when he was awake, but he was in the regular big common recovery room and I had to remind them that he was post transplant and preventative isolation, so they quickly moved him back to his isolation room. As was his usual practice, he immediately ate (he told me what to pack so we had our own food, although CHEO always allows you to order off their menu in recovery). Without the Dexamethasone now, waking up from surgery he is WAY more pleasant!

Within an hour of coming out of surgery, we went home and he ate some more. Easy peasy surgery. No post surgery pain meds needed, either. Within 48 hours he was great and excited to have his first relaxing bath in almost a year. He played with boats and didn't want to get out. A far cry from the regular crying and stressing every time where it took Mario and I to get him washed and out as quickly as possible. I've had so many showers assisting in my bathing suit this year!

Ollie got this cool new MP3-like device as well as a few other donations like a Braille watch and other assistive devices for visually impaired people from his Braille teacher, Leona. It allows him independently to listen to books and written documents read aloud to him. We're still learning with the IPad which is harder because it doesn't have raised buttons.

Chewbacca is clearly missing old Minou and is Ollie's regular hang out buddy now.

Friday night NERF war games happened and Ollie was thrilled!

On Sunday, unfortunately his eye was very swollen and red. Fortunately no fever, though. I called the oncologist on call to decide what to do. Thankfully our nurse practitioner, Terri was also on call this weekend and between the two, they decided that it could wait until the next morning when we were going in for bloodwork anyways. Ice packs on his eye and Tylenol kept the minor pain away until then. 

On Monday morning Ollie told me that he had prayed the night before to ask God to let him be able to take oral antibiotics at home instead of having to be admitted and IF he needed to be admitted he asked God to give him strength to handle it without freaking out. He continues to leave me in awe of his faith despite everything and shows me that God is working with him to get him through everything with his hope and faith intact.

God was listening and we got the oral meds! He also helped Ollie by giving him the strengthto easily get through the poke (needle) for his bloodwork with no fussing or crying at all. He took deep breaths all on his own, held my hand and Manon's (the amazing child life specialist in the Medical Day Unit) and told nurse Carrie just to do it quick. More easy peasy.

Yesterday we resumed physio with his amazing physiotherapist, Alison. I told her after that I was 100% convinced now that he relapsed in April before getting the stem cell transplant because he wasn't strong enough and through Divine intervention we came back home to get stronger to make attempt 2 successful and she had played a huge role in that. I know that he made it through transplant because he was physically, mentally, emotionally and spiritually stronger when we went back in July. 

Today Ollie learned to walk with his first blind cane thanks to assistance from Jennifer at Vision Loss Rehab (Leona works there too and they are incredible). He was super psyched as he knows this will make him more independent and prepares him to be able to have his Canadian National Institute for the Blind (CNIB) Buddy Dog. Speaking of which, Ollie was featured in their newsletter this month! 

Lesson one was all indoors. Next week we'll go outside and learn to use it on the street! Maja, if you're reading this, I'm thinking of you, missing you and so grateful for everything I've learned about blindness from you. 

So that's been our week (beyond melt downs about online schooling bumps). Today I found a heart in my morning bowl of Cheerios. Signs are everywhere and we are grateful for the love in our lives! Hope your week is going well (aside from the US debate last night)!

The PICC Fix

I watched the sun come up over Sick Kids, the Toronto General, Mount Sinai and Princess Margaret Hospitals last Saturday morning morning. I wasn't up because of a burning desire to commune with nature, but rather with eyes burning from fatigue, banished by my son from his hospital room because he was angry at the world and mama got the brunt of it.

It was a really rough weekend. Mario spent Saturday evening and Sunday during the day with him. He was so upset about the IV and PICC issues and then to add insult to injury, because he had to go into the OR today to get his PICC fixed, he had to have ANOTHER COVID-19 test (#6!!!)!!! 

While Mario did his best to get Ollie to eat real food (especially as they had to stop the liquid nutrition called TPN because his PICC wasn't working properly), everything was overshadowed by Ollie's stress and agony over the IV and PICC. 

He did have moments of fun with Daddy when he let himself.

Ollie had a rough Saturday night with lots of bad dreams and waking up missing me. Naturally he loves daddy, but as he's told me before, "Daddy is best at fun and Mommy is best at helping with feelings." Mario basically told me same Sunday. They waited for me to do the COVID test yesterday and Daddy stayed to help us. 

Mommy offered to let Ollie help her to do a COVID test on herself. In the end Daddy took one for the team and had Ollie help him to put the swab up his nose to show him that if he stayed calm it won't be so bad.

It took a while, but we did get Ollie's done with minimal crying and anger. 

Once that was done, Ollie was happier and more engaged in play. He still had moments of upset and anxiety on Sunday knowing that he'd likely have to have the PICC replaced in Monday. He also had a restless night Sunday.

On Monday they confirmed that there had been a cancellation in the OR and they could take him at 2:30 pm. 

It was our first and although not a bad one, hopefully our last experience in an OR at Sick Kids. It was done through the Image Guided Therapy (IGT) unit. They were prompt.in bringing us down to the IGT on the second floor, but then we waited an hour to go into surgery. Thankfully Ollie was calm and slept while waiting. They didn't even need to give him any extra meds to relax him before the general anesthesia.

It took about an hour and I waited in their very socially distanced waiting room. They had to remove his previous size 5 PICC and replace it with a size 4 because they wanted to give his vessels a break. Fine, but if he rejects the stem cells for any reason and we have to do a second try at it, we'd likely have to go back up to a bigger line for transplant. Since this is central line number five in the past ten months we are going to be cautiously optimistic and hope that he'll only have this one in for a few more months post transplant to allow them easy access for bloodwork and to push meds if ever needed and then he'll never need one again!

When he came out he was okay in recovery, but became angry as he became more lucid back in his room. Mario and I both stayed until he was calm. We've seen this many times after surgery as the anesthesia seems to make him aggressive. 

He did finally calm down and I was able to head to the condo to see Abby and my mom and stepdad who had come up on Sunday to spend a few days with us before Abby leaves for Ottawa. 

As always Mom arrived loaded with groceries and fed us too well for the few days they were here. 

They would have loved to see Ollie, but because of COVID and him being in the Bone Marrow and Stem Cell Transplant Unit, that wasn't possible, so they promised to come back to see him when he's back at the condo before we head back to Ottawa. He was very sad not to see them in person.

Tuesday Ollie was pretty tired from his surgery, but other than a bit of tenderness in his arm, he felt okay. 

And so began our more aggressive trial and error with solid foods. He can't be discharged until he's eating solids and able to take his meds orally. 

So far there are few tastes that he likes, but my family (especially on my dad's side) will appreciate that dill pickles are something that he does want. Wednesday night he managed to eat a bit of a ham (no deli meats for him due to possible bacteria, but he can have the packaged Maple Leaf without preservatives and as long as it is a brand new package), mayo and pickles sandwich and was thrilled to find something else he can tolerate. Watermelon is also okay. So are ring pops! LOL We'll keep trying until he is eating enough calories that they can take him off of the liquid nutrition (for now they have reduced it).

 

As for meds at home, he'll be on Tacrolimus which is an anti rejection drug; his Lorlatinib to ensure all of the cancer is gone and there's no relapse of lymphoma; Ondanzatron for nausea; Hydrocortisone to regulate his adrenal system until it can function again normally; and vitamins. Thankfully they will be spaced out several times a day and he's no stranger to this type of routine. We've started the Lorlatinib two days ago and the Tacrolimus orally today and each day this week we'll work up to having them all orally administered.

On Tuesday he also had his weekly ECG to check his heart and a visit from Optomology. His eyeballs have been hurting him on and off the last few days. It could be the after effects of radiation as we saw about a month after his treatments in Ottawa, but our fear is always that it's lymphoma still in his brain. Thankfully the Lorlatinib would target any lymphoma cells left and the optomologist said she saw nothing to be concerned about, that the optic nerve is clearly significantly damaged but doesn't look inflamed as it once was. She suggested it might be dryness or fatigue causing the pain, to monitor it and let them know if it persists.

We're finally moving in the right direction again and plan to stay that way so that he can come back to the condo over the next week and maybe even be able to spend some time with his sister before she goes. 

Thanks for your continued interest! 

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.

Home for our hero

HOME. A great four letter word. One of the best ones. Second only to LOVE. 

After a whirlwind of 47 days at CHEO where he had a relapse, got lymphoma in his brain, went blind, had incredible pain, likely had seizures, was in ICU for over a week, had two brutal rounds of chemo and a new PICC line inserted. Then only 36 hours at home when suddenly he was back to CHEO for 16 days to fight 3 infections, shed most of his skin from chemo, painful bed sores, major bruising all over his legs, arms and torso, removal of his new PICC due to infection and implantation of his broviac in his chest. He's so weak, physio is necessary to rebuild his muscle.

Now home for a mere 24 hours before heading to Toronto tomorrow for preparations for his radiation and stem cell transplant. Ollie and I will be in Toronto for 3 months. Abby and Mario will be with us at least a month until transplant and possibly longer depending on COVID-19, work and school.

On the one hand this seems incredibly unfair that we get one day at home together after the last two hellish months, but on.the other, home is literally where the heart is and mine is with my husband and my children no matter where we are. I've always said that you can make a home anywhere. I have my parents to thank for this. Although they were divorced when I was young and we moved a lot, I got used to making home wherever I was. I found comfort in my loved ones being around me whether it was at my mom's, my dad's or my grandparents' house. It was never about the physical place. Always about who I was with. 

Interestingly enough, Abby wrote a beautiful piece recently for a writing competition about what home means and that's exactly what she said, too. She said our house felt quiet and empty without Ollie and I, and that home was wherever we were all together, even if it was in a hospital room. I'm trying to get her to post the piece to this blog as it was beautiful.

So as we prepare to leave our home for months for a short term condo rental in Toronto to get a lifesaving transplant where my daughter will save my son, I don't give a fig where we will be physically as long as we're all together as much as we can be. 

So in this time of social distancing or isolation when people are feeling caged, restless, bored, confined, stressed, maybe even agitated by your loved ones, think about how much we are grateful for this or any time together. Don't take this time for granted. Stay home and love each other. Enjoy time together. Talk to each other. Be present. Practice gratitude. This time is surreal, but so much more precious than you can imagine. 

I leave Ottawa sad that I won't see any of you for months, scared of what is coming next, but grateful that we are together and will get Ollie well so we can come home whole again. Wishing you all well and sending you all love.

Bacterial plan changers

Ollie has not one, but two bacterial infections. One in his PICC line (apparently very common) and the other systemically in his body. Over the next few days they'll confirm the exact types, but in the meantime they have him on 3 different antibiotics and will make any changes needed when they know. 

In the meantime we are told it likely means 10-14 days in hospital. This means no Toronto next week. Ironically I didn't want to go twice in two weeks and tax Ollie that way, but didn't get my way originally. Now it seems I am. We're waiting to hear from Sick Kids Hospital on how or if this changes the rest of the plan. I am hopeful that we'll still go for end of the month and just do scans there before we start days later. 

Ollie is pretty tired and the mucusitus was very painful today so he slept a lot. We're all bummed out that this stay will be longer than hoped, but the show must go on. 

Not much else to report at the moment. Wishing you all an uneventful and peaceful weekend.

The ending of the new beginning...

Tuesday started with the now routine complaints from Oliver wondering when they were going to come and get him for his lumbar puncture with intrathecal chemo. He'd been fasting for it and hadn't eaten in 13 hours by the time they took him at 10:15 am, although I had tried to get him to eat something at midnight to no avail. He'll now get these LPs weekly on Tuesdays until his stem cell transplant, just as maintenance to make sure no more of those jerky lymphoma cells get in. So the LP went well and he ate toast out of my purse in recovery. My friend Kevin always teases me that I'm like Radar from MASH and can source anything and I'm doing it at the hospital too to be able to get Ollie whatever his heart desires, especially after procedures and hard stuff. 

So after Ollie had lunch (I got busy and completely forgot I hadn't eaten until 4:30...easy to understand why I have lost 12 pounds in the last months without noticing), the doctors came around on rounds and gave him the good news that they had no medical reason to keep him any longer if he felt well enough to go home. I think we were both in shock that this endless visit was finally over. We called Mario and arranged for him to come and get us by 3:30 and to be here to participate in a special event at 3:30.

Next the VAT team came in and changed his PICC dressing so we wouldn't have to come back to CHEO to do it tomorrow. Ollie was starting to get agitated, so I kept his mind off of it by asking him to tell me about the rare Beyblades he wants. At the beginning of all of this I'd just talk over his anxiety. Now I've learned to re-direct the conversation and get him talking about something he's passionate about to take his mind off of it. I ask coaching questions to try to lead him down the path I want him to be on to reduce his anxiety and anticipation of pain.

Next our Nurse Christine and student Nurse Anais changed his PICC caps, disconnected him from the line and fluids, and flushed and hepronized his PICC. When we're at home I do the last parts and it seems like forever since I have. They then gave Ollie his Neulasta shot to boost his neutrophils over the next week. We're still fighting with one of our insurance companies to pay the 20% of this $3000 shot, but thankfully the other 80% is covered by the other insurance company.

The psychiatrist came through our seemingly revolving door next. Ollie wasn't really wanting to talk much about feelings except the one where he felt we should be getting ready to go instead of talking. LOL I confirmed that we'll have a psychiatric consult in Toronto set up and thanked the doctor for his help.

After all of this Ollie went to the playroom to play Beyblades with his friend Lukas under the watchful eye of Maryse and volunteers in Child Life while I packed the many many things that have been acquired in our room in 47 days of living here . Lukas has been one of the only kids near his age on the oncology ward at the same time as Ollie over the last months. Lukas mainly speaks French and Ollie English, but they both understand the language of Beyblades and of loneliness and isolation from kids your own age. 

A little while later, Vanessa from physio came by wanting to practice stairs with Ollie to help him get in our house without Mario having to carry him. In typical Ollie fashion he was determined to show he could. After 47 days of not walking very far or doing anything very active, he stepped up literally and figuratively. He walked on his own steam up to the physio gym on the 5th floor (we brought the wheelchair for the ride back). The first step on the stairs was hard and it was evident he was nervous, but he kept going and then walked up and down three times! 

You wouldn't think 4 stairs for a normally active 7-year old was a big deal, but considering I sat in ICU a few weeks before so scared that he seemed to have had a stroke, was blind and may be permanently incapacitated, this was almost miraculous to me. He'll continue to get Outpatient physio over the next few weeks and in Toronto as inpatient when needed.

When we got back to 4 North I was told that Optomology wanted him to come tomorrow for another exam. Fortunately the team coordinator, Joanna called down to see if we could do it another day and they said come down now and we'll take photos of his eyes and the doctors will analyze them tomorrow. So off we went to Clinic C8 while Mario started loading the van with our numerous things. The visit including photos took about 15 minutes from start to finish. Amazing.

When we got back to 4 North everyone was ready for the big event. When a patient finishes their last planned admission on 4 North it is celebrated with a big noisy parade of nurses, health care aides, doctors, parents, kids, etc. The patient finishing gets to bang the gong and everyone cheers. I showed Ollie where the gong was and he excitedly banged it while everyone cheered and clapped. 

Then they told him to do it again because after 47 days and all he's been through he deserved it. 

There's nothing like the feeling of being surrounded by people who you barely knew mere months ago, but whom have been working tirelessly to make your child well and to encourage you every day to keep doing the hardest thing you've ever done in your entire life. I wish you all could have been there, too.

Ollie's friend Lukas presented him with the gift from 4 North for his bravery. They later hugged and it squeezed my heart so hard. 

We only wish Abby could have been there, but it was all last minute and happened on the day that she was on a field trip cross country skiing with her class. We've promised she'll be there when he rings the bell to signify he's beat cancer and is all done!

After the excitement, thanks to our dear friend Lori who brought a Merry Dairy Confetti ice cream cake last week that we'd been saving for a good day, we all had cake and enjoyed the happiness in 4 North together. 

As happy as I was, I felt sad saying goodbye to the staff and a few families we have gotten to know. I told our oncologist, Dr. Pinto that I felt like we were breaking up since I have to start "dating" a whole new team in Toronto. She promised they're still with us and will see us in the Medical Day Unit (MDU) before we leave and after we get back to follow up and keep him well. She gave me her email and hugged me so hard and I knew again how blessed we were to get these incredible humans on our team. It's so much more than a job to all of them and is clearly rewarding despite the inevitable heartache and loss that sometimes comes with it.

So we're home together at last. We're all tired and Ollie is still battling fatigue and mucusitus (like cancer sores in his throat from chemo), so we're keeping him comfortable with anti-nausea meds and popsicles. It may still be another long night, but at least we're home together and on the road to the next step to curing our warrior.

We're hoping for a few quiet days. Next week we're back at CHEO for another LP, scans, dressing change, etc. Then off to Toronto for a radiology consult add scans there for two days, then back here for 11 days and back to Toronto for the main event beginning March 25. 

If we go quiet for a couple of days, don't worry...we're just recharging and enjoying the simplest and most important pleasures to stock up on positivity and determination for what's coming next. 

A huge thank you to all of you who have followed, prayed for, fed our bodies and our hope, hugged, fetched for, sent messages of support and gifts to us. I can't believe we've been doing this for 5 months already (Abby didn't believe me tonight and had to count, too!), but that's in large part because you're all behind us making it so much easier than it otherwise would be. Big love to you all!