The Brave Boy and Clowns at CHEO

Monday, 19 October 2020

Making Days Count

 Cancer teaches you to measure everything in days. Each day to be handled individually without trying to think too far ahead. You cannot let yourself play the "What if?" game about the future because it is too scary to contemplate. So you plan for today and maybe tomorrow, but rarely beyond. 

In the same vein, each day your loved one survives is to be celebrated, even if only in your innermost thoughts. Some of us optimists want to celebrate, but our more cautious (maybe even a bit paranoid) partners are too afraid to celebrate too early. So anniversaries and milestones are marked quietly with little fanfare, but many silent prayers of gratitude. Mostly we just try to make the days count while silently counting them.

Yesterday was 200 days since Abby donated stem cells to save her brother.  I started her day with a big hug and a quiet thank you for what she did. At the time that she did her collection we thought he'd be getting them 16 days later, but just 8 days after he had relapsed and the transplant was shelved. It would take another 111 days before he'd actually receive the most amazing gift he'll likely ever get  (besides a child of his own one day if that's ever miraculously possible for him after all of the chemo and radiation) from anyone. 

As I donated blood on Thanksgiving weekend (apparently a record according to my nurse who said it took me only 4 minutes and 15 seconds to get my entire donation out and that's the fastest she's ever seen it done), I reminisced and marveled at how my 11-year old daughter sat with her blood pumping in and out of her constantly for 5 hours for her brother and all of us. I sat for a mere 4 minutes and 15 seconds, which will also help to save a life somewhere, but I can't even imagine what Abby really felt as she went through this.

Today is 90 days post transplant for Ollie and next week we do the long anticipated 100 days scans.

Ollie is taking the scans into stride, although he knows they're pretty important. He knows because he heard me asking his Nurse Practitioner to ask his oncologist and post-transplant doctor to scan his whole body to be sure there's no cancer. 

They were going to do just an MRI of his head. This does make sense because it's where his Anaplastic Large Cell Lymphoma has been most persistent and problematic. However, lymphoma is a big jerk that's good at hiding and I reminded them that while Ollie is doing really well and has no visible signs of disease, he didn't at first either. Were it not for the tiny "blessed bump" that appeared on his neck we might never have known because he was so well otherwise. His bloodwork was perfect, his energy level was super high as usual and he appeared well and normal. And we know he had lymphoma before the bump appeared. 

He wants to ring the bell at CHEO. But we don't want him to ring the bell until we feel confident that his treatment is really done. So we need the full body scan to be sure it's not hiding. We also need it to help us get past this feeling that we're just waiting for them to find it again.

In actuality thinking scans will reassure us is somewhat ridiculous because it can always come back or he could get a secondary cancer after scans and at any time. One of the outrageous ironies of cancer is that the chemo and radiation treatments could cause more and/or another cancer! What a world we live in that we have to accept this risk to try to save our loved ones a first time and just hope there are no subsequent times.

Thankfully we have an amazing team who know what we have been through the past year and that we are reasonable people who advocate for what our child and our family needs to survive. They came back suggesting a head MRI and a full body CT on October 28 to be sure. I told them if they feel that'll tell us what we need to know, we're good with that. This is also hard for me as I know the first MRI and CT he had a year ago that same week were inconclusive. They saw something, but didn't know what it was for sure until it was biopsied on November 11th, got the pathology on November 18th (Mario's birthday so I'm hoping he doesn't remember this from last year and I'm somewhat comforted at this moment that he doesn't read this blog) and told us on November 19th. So part of me says, how do they really know from the MRI and CT? 

The other now wiser and more knowledgeable Momcologist part of me says that if they see anything this time, they'll immediately assume it's cancer again, whereas at the beginning, they assume it's everything else first and slowly work their way up to the Big C through the process of elimination. Strange how things go in reverse on this end of cancer. I wish they could have started with cancer and eliminated that for us first. If only...

Also as part of his 100 days prep he has had a few more tests...another chimerism test (we'll hear results tomorrow, but expect it to continue at 100%), an EKG, an Echocardiogram and a bone density test. He had this test on Thursday.

This time they jokingly confirmed that he did still have bones (he seemed nervous after that like he thought they seriouslly believed he might not) and could see them properly since he didn't have contrast from a CT still in his body this time! 😄

Overall he's in the green zone, with a slight dip into yellow on his left hip. Not sure what we'll be doing yet about that, but there are treatments that can improve this. Also, I am relieved because his spine is a -0.4 putting his solidly in the green. At one point when his back was hurting before transplant they had been concerned that he had osteoporosis and a fracture in his spine. Thankfully an x-ray confirmed that he didn't. I was also concerned given his many lumbar punctures and the fact that we seem to have genetic issues with the lower spine deteriorating prematurely (I have it, as does my brother, two cousins and an aunt). It did confirm as we suspected that he has a very hard head! 😄

He continues to get stronger and more stable physically each day. He can now walk many blocks without a break or feeling winded. 

He's standing, walking, climbing stairs and dancing all the time now. 

He's stumbled upon the Christian Rock Band called, Skillet. A Skillet song was used in one of his favourite Beyblade cartoon shows, which is how he found them and asked me to add it to his latest playlist. He loves the song called, "Back from the Dead" and pretends to dance like a zombie to it. What strikes me though, are these lyrics:

"Light it up, light it up, now I'm burning
Feel the rush, feel the rush of adrenaline
We are young, we are strong, we will rise
Cause I'm back, back, back from the dead tonight
To the floor, to the floor, hit the red line
Flying high, flying high at the speed of light
Full of love, full of light, full of fight
Cause I'm back, back, back from the dead tonight
Back, back, back from the dead tonight."

A Christian Rock Band and a song about coming back from the dead resonates with him?! There are signs everywhere...

Ollie has discovered that he can still play some of his favourite games like Kerplunk.

And loves to get homework from his vision itinerant teacher where he gets to be creative like imagining and designing his own alien, although daddy may have had even more fun than Ollie working on this one...

He is enjoying Treasure X because you not only get to be destructive by breaking up plaster blocks, but you also get to dig and search for the pieces of the figures, which is highly tactile (and messy, but he can do it in his own without constant assistance and that's more important).

And the many lock and key crypts and safes challenge both his dexterity and his mind.

He got a new basketball game for what will soon become an epic playroom out back. Very first shot playing with the new basketball game, he got it in the basket. Unbelievable.

Since we know we're housebound for many months yet between being immuno-comprised, needing regular vaccinations again in the second six months after transplant (beginning around February) before he could go anywhere in public and of course, COVID, we've decided to make use of an unused space and give the kids one more place to go for now and after COVID when they can finally have friends over again. We'll share a big reveal in a couple of months when ready.

Also playing road hockey in the back whenever he can and now we have a ball that makes noise to help him find it. 

Before cancer he was a snuggler who was starting to be the big boy and pull away from us. One good by-product has been his return to hugs and holding hands regularly. I never want to let him ever again.

Mostly he's happy, with moments of frustration at having to relearn how to do something or wait for assistance. 

I'm reading him the book, "Run" about Terry Fox. He gets upset when I cry, but try as I might I tear up regularly and he can hear it in my voice. I try to reassure him that 
it's not sadness, but just gratitude and empathy for what that brave young man did 40 years ago. That I can now totally imagine how his mama felt about her brave and determined boy.

Ollie, too has big feelings, but he's always had these. We all have them and did before cancer, too. Maybe our big feelings actually make more sense now. We're all working at sharing and processing them better and trying to be patient with each other as we each take our turn melting down, feeling sad and being loved back into comfort and happiness again. 

Friday, 9 October 2020

Motivation and Rewards

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am eternally grateful to all donors and potential donors of all blood products and stem cells. I am donating blood this weekend for Thanksgiving 1. In memory of my grandfather who passed 30 years ago this weekend from cancer;
2. In honour of Ollie; 
3. As thanks for all of the generous souls who have donated blood and plasma and saved him so many times this year;
4. To pay it forward and sad someone else's kid the way that others helped to save mine. 

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

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

Thursday, 1 October 2020

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)!

Wednesday, 23 September 2020

Dawn and Déjà vu

Life is a perpetual cycle of love and loss. Even when you gain one thing that you want or need, you often lose another. Or perhaps you first lose and then gain? The proverbial chicken and egg debate.

I have been thinking about this over the past week as we have settled into our newest normal back at home. Examples of this abound. We've secured our son's immediate future and stopped the lymphoma, yet had to surrender his innocence. We've made it back home to get the kids back to learning in school, but forfeited the ability to physically go to school, having to choose online lessons as much because of his stem cell transplant as because of COVID. We've attained the right to rest and be happy that we saved him, but yielded our control of our fight or flight response and are often unable to enjoy what should be a joyous time.

We safeguarded our son's life and had to let go of our cat Minou's. Admittedly it's no contest between our child and our cat (Mom if you're reading this, take note that you should always choose your children over your cats! ;-)), especially since he's 8 with so much life to live yet and she was 18 with little life left in her (besides the whole I carried him in my womb thing). Nevertheless, it was hard to have to take her to the vet to say goodbye in the first week we were back. She had hung on long enough for him to get well. Gain one healthy loved one, lose one sick loved one. 

Abby insisted on coming and I debated if this was the right thing to do as it's such a hard process to go through. In typical Abby fashion she wouldn't take no for an answer when she believed in something and once again she stunned me with her maturity and strength. I forget she's only 12 sometimes...and then her "tweenage" freak outs happen and I remember! 😜

Ollie was sad, but accepted her death with more pragmatism than I imagined he would. He rationalized that she'd had a great life of health and love with our family, had me as her human mama for 17 years (making her more than 90 years old in equivalent person time) and that she shouldn't suffer if she was ill. Minou was a pretty grumpy cat, but always had a special affinity with him for reasons unknown until now, I guess.

We're now spending a lot of time loving up our two year old Chewbacca, who seems depressed that he is now alone. We're also hoping that by spring he'll have a new Buddy Dog friend to keep him company. 

Over the last year, Mario, Abby and I have gained an unimaginable understanding of what's really important in life, while losing some of our physical and mental well-being as we poured every ounce of energy and strength that we had into fighting lymphoma and saving our Ollie. None of us has had a doctor, dentist, chiropractic, physiotherapy, massage therapy or any other kind of health appointment in over a year. I am the queen of planning and scheduling normally, but we had no time and no bandwidth for anything but cancer. 

So now we're scheduling a years worth of check ups in a short period of time. Abby's struggled with stomach issues over the last month or so (believed by her pediatrician to be anxiety, but then this is one of the same pediatricians who was certain Ollie's bump was a bacterial infection that just needed antibiotics, so how does one trust this doctor again?!). Early Saturday morning she was having significant pains in her lower right abdomen, so worried about appendicitis, I took her to CHEO at 3 am. It really is the witching hour and I cannot count the number of nights in the past year that I have been up at 3 am comforting a sick kid. 

The ER was dead and when I told them that Abby's brother was one of their oncology patients who had just had a stem cell transplant, they whipped us into an oncology isolation room immediately. Membership has its privileges. 😩

Soon Nurse Steph came along! She's a floater whom we had several times on the oncology ward. She said she had seen the last name on the board and figured it had to be his sister and had been wondering why they hadn't seen Ollie in months. She was very happy to learn how well Ollie was doing. 

Then we waited 4.5 hours to see a doctor. Sigh. Those hours were long and uncomfortable for both of us. Abby slept a bit and tossed and turned. Yet, it felt kind of normal for me at least. I stood and watched the sun come up over the CHEO parking lot and remembered facing the same parking lot at dawn while standing at a window two floors above in ICU in January. This was after he went blind from lymphoma in his brain and spine and I desperately prayed at that window during sunrise for him to live. This time I spent the time praying it would be something simple for Abby and reassuring myself with logic that the odds of both of them having something so terrible happen to them in the same year were almost impossible. 

About 7:30 am the doctor came in and did a quick exam. He didn't think it was serious, but given the location of the pain, he ordered an ultrasound just in case. Naturally, as that's exactly what Ollie's first test at CHEO was, too. Breathe...settle down PTSD...I'm okay...I'm okay... she's okay...she'll be okay. And wouldn't you know it, same technician as Ollie had! 😄 Maybe I was being tested or some powerful entity was having a little laugh at my expense. I prefer to think that God was showing me that similar situations do not necessarily have the same endings and maybe even that I could do it all again if I had to. One step and one test at a time. Although I sincerely and selfishly hope I never have to again.

The ultrasound thankfully looked clear and we were sent home with medicine for a minor ailment that is easily fixed (Abby asked me not to share what it is, but is feeling better). Abby got a little taste of what her brother had gone through countless times over the past year and how scary every moment can be when you don't know what may happen to you. Ollie also felt incredibly empathetic and very knowledgeable when she came home and they compared notes. 

Overall he's been feeling really good and wants to do more and help around the house. So he helps with folding laundry and prepping dinner (salad is his specialty! LOL). Mainly he just wants to be included and engaged.

So it was kismet that he got invited to a friend's socially distanced birthday party in the park last weekend. The first one he's been to in a year. I wasn't sure he'd have the stamina for it, but of course he completely proved me wrong again. 

He wore a mask the entire time (as did I) and anytime kids and parents came to talk to him, they respectfully wore theirs even though we were outdoors. I really love our village! 

He even begged to get up and play hockey with the rest of the boys. We didn't have a helmet and I was worried about his balance and him getting knocked over, so insisted I stay with him and we play near the sidelines. The kids and the dads playing were so respectful and kind to let Ollie play a bit while being careful not to get too close to him for his health and so as not to cause him to fall. He played a bit and then got mad at me for being there and sat down on the bench. Later at home he told me my being with him made him question his confidence. 😭 Man it's hard to learn how to do everything differently.

Thankfully, he still had a great time and a few of his friends took turns coming over and talking to him about Beyblades and asking about his collection and for his advice on what they should buy next. I wanted to squeeze them and their parents all so hard with gratitude for how awesome and kind these boys are.

Also amazing and generous is their principal, Roisin who with her family and her team has been with us every step of this journey. She brought by her son's outgrown guitar for Ollie on Sunday and he was thrilled to have his very own.

Another thoughtful friend and classmate thought of him one day when he saw Beyblade Micros in a store and couldn't wait to get them for Ollie! He and his dad dropped them by on the weekend and we had a blast playing with what we've dubbed the "Baby Beyblade" set. Ollie knew his friend needed a Garmadon mini figure for his Ninjago Lego set and was so pleased that he had a extra to give him, too. It all makes me so happy to see the cycle of kindness that Ollie has inspired and continues to perpetuate.

On Monday we were at CHEO all day because Ollie had another intravenous immunoglobulin (IVIG) infusion. As I've explained before, this is a blood product taken from the blood of many donors where they extract certain antibodies so that they can be given to immuno-compromised patients like Ollie to boost his immune system as it develops. Still grateful to each and every donor that makes this possible, each and every time he gets a blood product. Blood and blood products have repeatedly saved his life. 

With Thanksgiving coming soon, we would love and appreciate it if any of you are able to go and give blood in the coming weeks. I just made another appointment myself for Thanksgiving weekend to both pay it forward for Ollie and in memory of my dear Grandpa who died of cancer thirty years ago this Thanksgiving weekend. If you download the app, it takes mere moments to pick and book a date and time at your preferred location. For more information, visit Canadian Blood Services.

Monday's day at CHEO which otherwise went so well ended rather badly when the VAT team arrived to try to take his PICC (central) line out. Ollie had decided to have it removed and to have a weekly needle for bloodwork instead to avoid the awful and painful dressing change and the discomfort of the line and made it difficult to bathe and do everyday things without stress. He had explained to me that the fear of a "poke" was the worst part since it didn't really hurt, but just pinched, whereas the dressing change with his sensitive skin always hurt a lot. Fear was easier to handle than pain he told me. The doctors thought that was very perceptive of an 8-year old.

Unfortunately, the VAT team discovered it was a "cuffed" line that Sick Kids had put in, so would need to be surgically removed. Ollie went into a tailspin and had a complete meltdown requiring the poor VAT nurse to slap a dressing on as quickly as possible so that he wouldn't contaminate the line. This is all while we are holding him down as he kicked and screamed, "I hope I get an infection and THEN you'll have to take it OUT!". Not fun. Worst dressing change ever and hopefully his last ever. You think it's over when the cancer is gone, but it's far from over. 

We had to call Mario and the two of us talk him down so he would listen to the new plan which was a rush ask for a surgical time and date. Today we got the call and he goes in tomorrow morning. One more to add to the dozens of times he's already been in the OR this year. 

I won't even get into the challenges of online learning with both kids as I'm sure I'd be preaching to the choir with many of you. Hoping things get better in the coming weeks as we all get used to it.

Time to get our little potato chip addict to bed so he's okay for his surgery tomorrow. Forty-eight hours after that he can have his first comfortable and relaxing bath by himself in a year. Simple pleasures.

Making Days Count

 Cancer teaches you to measure everything in days. Each day to be handled individually without trying to think too far ahead. You ca...