Anticipation vs. Anxiety

Today's the day. The day of Ollie's MRI and lumbar puncture to determine if the Lorlatinib drug and radiation are working. I am, as Abby would say, "excervous". Excited that the day has finally come and our agonizing wait is nearly over, and nervous about what they will find. 

In all fairness, I shouldn't feel too nervous as I am certain that the new treatments are working. Oliver is happier, healthier and more active than he has been since he became very ill and was in the ICU in January. His attitude is better, his sense of humor is on fire these days and he's determined to do things he used to. 

Over the past week he's gotten physically stronger and insisted on walking more and even going up and down the stairs by himself (with a paranoid parent nearby to catch his fall if needed!). He hasn't climbed the stairs on his own since January. 

He's embraced the Braille learning and is now teaching Abby and Mario. He learned the first five letters of the alphabet in Braille in about 15 minutes last week during his virtual lesson with Leona from the Canadian National Institute for the Blind (CNIB). She laughed and said we'll learn as many more as he, wants to next week, but told me after that he'll have them all down within a couple of weeks with his quick brain. 

This is an enormous relief considering they tell you that radiation can cause learning disabilities, but all we've seen so far is that his intelligence and quick wit have returned! He's even doing significant math in his head and learning multiplication! 

We struggle sometimes to find a balance between letting him do normal, physical things and getting him to lie down and rest. His ankles get swollen and his lower back starts to hurt if he sits up or stands too much. They're also looking at his spine today in the MRI to see if he has a compression or fracture, which is apparently very common in kids who have had chemo.

He's still annoyed that he has to cover his PICC line to swim, but there have been several days where he's gotten past this and happily floated around our giant kiddie pool.

Last week he also surprised us by insisting he could play like a normal kid in the pool on his own and did this...

 This may not seem like much, but for a cancerous blind kid whose balance and fear have prohibited him from even bending down to pick something up off of the floor, this is unparalleled. He then stood up confidently and stably and was so proud of himself. So were we.

Even little things like feeding himself soup are getting easier.

He got an exciting present of a favourite treat from sweet friend Sharon who has repeatedly sent lovely and unexpected treats to my kids over the past 8 months.

He also participated in a grade 2 scavenger hunt and his thoughtful teacher, Mrs. D sent me the list of items ahead of time so Abby and I could gather them and Ollie could just search in a basket to make it physically easier for him. Fenton family note that he used his Octopus that you sent! Thank you!

Abby's Virtual Graduation was last Friday. It was bittersweet. Picking up her grad kit and not being able to hug the amazing educators who have supported our family like never before this year felt awful. Abby was upset all morning. Add to this a call about a family member who was injured and had to go to hospital and the stress was palpable here.

When the time rolled around to watch the virtual presentation, Ollie wanted to watch, so I narrated what was happening for him. Naturally Mr. Inquisitive asked a million questions. Abby got upset at him and uncharacteristically lashed out at him saying this day was the only one about her and she needed quiet. He got mad and cried saying he didn't ask for cancer and couldn't help that he was blind and wished he could just be normal. By this time all three of us were crying. Some days no matter how much we want to be positive right now we just get caught between cancer and COVID. 

When we all calmed down we hugged it out and then sat down to watch the rest. It was as lovely as could be under the circumstances.

Abby was awarded the Kiwanis Club Award, which is generally given to recognize positive attitude, dedication and commitment to one's community. She also got a medal for Character. Both very fitting for our girl, especially this year given all she's done to donate stem cells for her brother.

While we've waited for today to arrive, we've had some fun. We had our own CHEO Teddy Bear Picnic last weekend since they couldn't hold their annual event.

Ollie begged us for the game Pie Face and we stupidly agreed to buy it. 

It was actually worth it for the laughs, though. 

Again and again Ollie got pied, but loved it.

We parents...not so much.

The MRI and Lumbar puncture (to check if there are still lymphoma cells in his cerebrospinal fluid) went well today. Now more waiting on results. Might take a few days and we'll share when we can. So being the Momcologist that I am now, I am confident that we will hear good news and either be in remission and on our way back to Toronto in the next few weeks to finally get Abby's lifesaving stem cells, OR see a significant reduction in the number of cells and lesions and stay the course on the Lorlatinib for a bit longer to get there. Honestly he's been SO well that it is impossible that he isn't kicking lymphoma's butt right now. 

So please send those positive wishes and prayers our way asking for the news we deserve. This kid has fought so hard to be a contender and it's his turn to win. Love to you all and thanks for your patience as we wait for news and next steps!

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!

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!

"A little child shall lead them..."

Ollie had a day of ups and downs. Mainly related to his steroids and "hanger" as he waited for his lumbar puncture this morning.

A high point was a special visit from good friends who we'll call H and E. We got special permission to have them come when they were at CHEO for an appointment at another clinic where H is being followed. H is also a brave warrior who has fought many health battles and continues to with an incredibly positive attitude. H was just what Ollie needed and he was thrilled to finally see a friend whom he could directly relate to. H and E brought gifts from their family and from the grade 2 classes at their school.

The visit and gifts really boosted his spirits and were a nice distraction. 

Ollie decided to join his school online for their assembly today. The grade 2's including his class were singing and he was eager to hear them. 

While participating, he also received the student of the month award for exemplifying the gospel value of hope. I was pretty touched that his teacher still does everything she can to make him feel part of his class this year. 

 Ollie also asked her if he could be online with them as his Valentine's for his friends were handed out. So this afternoon after his LP she made him a full participant in it and allowed friends to deliver their Valentine's for him to his bag beside the computer where friends could come and say hi if they wanted. 

Despite his outbursts the other day, when his classmates today asked him about going to Sick Kids Hospital in Toronto, he calmly and matter of factly told them he'd be going in a few months to get stem cells and was still at CHEO. I was moved to tears by the kindness his classmates exhibited and was so proud of them all. One beautiful little empathetic soul whom we'll call B excitedly told Ollie that he and his brother had both spent time having operations at Sick Kids, told him if he had any questions about where stuff was to just ask him and assured Ollie that Sick Kids has the funniest nurses. The ability that kids have to normalize things for and mentor each other constantly amazes me and I was very grateful to B and H today for their help.

Getting back to the lumbar puncture, although Ollie did have  significant anxiety before and after it, we did get great news that there are no lymphoma cells left in his cerebrospinal fluid. They do intend to continue LPs less frequently now, but will need to as part of his next rounds of chemo and to keep checking that the lymphoma does not get back in there again.

The optomologists stopped by this afternoon and said that both of Ollie's eyes are now seeing light and his pupils are reacting. This is an improvement as last week only one eye was responsive but slow. They said this is good news and they'll continue to monitor him for the next month or so. By the 6-7 week mark they should be able to tell if any of the damage is permanent.

In the meantime we are working with physiotherapists and occupational therapists to get him stronger, to learn how to get around blind and to relearn anything he used to need sight for. 

We are hoping to get at least some day passes soon, but need to have the OT visit our house first to ensure he'll be safe. Ollie scoffs at this and says he's been "born and raised" in our house and doesn't need anyone to tell him what to do there. LOL

Mario went over to be with him again tonight so I could spend more time with Abby. 

Wishing all of you a Valentine's Day filled with people you love around you!