Math, Milestones, Planning and Playspaces

The past month has sped by! So much has happened since I last wrote!

Ollie is doing really well physically, mentally and with his online learning. He's online with his vision itinerant teacher longer now (about two hours each morning) and doing some asynchronous learning with me in the afternoons from his class' online assignments.  He's doing amazingly well in Math, which I worried would be really hard without vision, but tactiles are incredible 

tools and his vision itinerant teacher has a wealth of experience in teaching curious little boys and keeping them engaged (even online!). He's amazing now atvdoing long addition, subtraction and multiplication with his tactiles and can even do it in his head now! We were playing the Bakugan game with him on Sunday and he was easily counting up the hundreds of points in his head! Neither chemo nor radiation has affected this boy's big brain!

We're joining his online class when there are activities he can participate in easily (he loves Mondays where they do Community Circle and show and tell). He's reading more Braille and in full sentences now (we're on his fifth Braille book and each is about 30 pages!). 

As part of his vision itinerant program there is a Daily Life Skills teacher and a couple of weeks ago a handful of grade 3 boys met online to talk about making their own breakfast and how they did it. Ollie made himself toast with butter, a boiled egg (we use an electric egg steamer with him so he doesn't have to use the stove yet) and a chocolate milk. He was pretty pleased with himself and we were very proud.

Speaking of eating...since he passed his 6 months post transplant milestone and is physically doing great, he was cleared to stop the low bacteria diet that he's been on since stem cell transplant. This meant he could finally eat lunchmeat and have the Subway sub that he's been dreaming about for 7 months!

It also means a return to fresh fruits that have no peel, so berries are back in style at our house! 

On the medical side, he's been doing so well. He used his incredible experience and bravery to coach daddy through his own blood tests recently when Mario's life insurance was up for renewal and he had to submit to tests to get a better rate. Mario hates having blood taken and it's seriously like getting blood from a stone. Ollie made him drink plenty of water and was delighted that finally daddy was the one who was NPO (NPO means “nothing by mouth,” from the Latin nil per os) that day. Ollie helped him breath deep, held his hand and talked him through it. My how far we've come!

Ollie didn't have to go back to CHEO for his own bloodwork and check up for an entire month (which was something to celebrate, but also anxiety causing for mommy who remembered vividly that he had relapsed in a mere three weeks originally). We did have to go for a quick pulmonary test on February 3rd and while we knew this was an easy test, I had been feeling weepy and uneasy for days about having to go back to CHEO. It's comforting to be there once we're there, but each time the idea of going back is still stressful.

So on February 3rd we arrived in Clinic C9 and a man came to meet us and called Ollie and I by name. I didn't at first think this was strange, but a few minutes later wondered how he knew my name as I am listed by my first name in CHEO's records (Dawn is my middle name). Plus most staff at hospitals call you "mom". 

When he introduced himself as Strider and explained that we'd emailed in the past, it all became clear. Strider is a respiratory therapist at CHEO, a friend and colleague of dear friend Jamie at CHEO. She connected us when we were in Toronto the first time when Ollie was relapsing. I had asked for survivor stories and she (and so many others) delivered as Strider is a two-time childhood cancer survivor. He sent us the most beautiful survivor story and gave us such hope. And on this day when I was feeling weepy and honestly anxious about the future and the possibility of relapse or a secondary cancer, this was a Godwink to remind me that everything can be okay. Strider has lived his entire adult life cancer-free and is working at CHEO to give back to kids who are just like he was. It was such a blessing to meet him in person and know that one day Ollie can also be a healthy and kind man just like he is.

We've been helping Canadian Blood Services and our friend Steve Gleddie at the Bruce Denniston Bone Marrow Society  to promote the #Beahero campaign to encourage folks to get swabbed for the stem cell registry. 

As a result of COVID, they can't hold swabbing clinics like the one that they were going to run in Ollie's honour last March before COVID hit and we had to cancel. So there are fewer people joining the registry at a time when there are more than 800 people in Canada waiting for a match and thousands more around the world. Most importantly we need to increase the number of potential Canadian donors (especially from ethnically diverse backgrounds) so that families that don't have at least a partial match like ours did still have hope that their loved one can be saved like our Ollie. 

We now know of two beautiful souls who got on the registry because of Abby and Ollie (thanks to Cate and Bev) last year. We also directly know 5 other families whose children needed transplants over the past year and 4 of those 5 didn't have family matches, but thank God found matches on the registry. 

If you know a healthy someone between 17 and 35, please encourage them to order a free swabbing kit from Canadian Blood Services. Be a hero to someone like our Abby is. Best. Gift. Ever.

We also got some pretty exciting news last week. Ollie is getting his Buddy Dog from the Canadian National Institute for the Blind (CNIB) on March 5th! Details will follow, but we know it's a lab and will be 2 years old on February 28th. 

We got Ollie the perfect dog toy...a NERF Dog Ball Blaster! He can't wait to introduce you to his new best friend!

Finally, today we had another medical milestone in that Ollie got his first two re-vaccinations. Over the next months he'll get them all again (as and when it is safe for him to do so). Please people, vaccinate your kids and tell your kids to vaccinate your grandkids...we're now doing it a second time because his stem cell transplant wiped out his immunities and I now believe even more in the power of medicine to keep us well and to heal us.  He was a complete champ as two lovely nurses did them simultaneously so it would only hurt once. And this after bloodwork! 

Now on to Abby! She's decided to cook us dinner one night a week. The first week was a pretty yummy taco bake. 

She's still not thrilled about online school, but is hanging in there and knows it's only a few more months.

We've also been working on "The Clubhouse" for the kids. This is a secondary building behind our home that was rebuilt in 2008 after snow caved the roof in. We've mainly used for storage and Mario's workshop, but there is a large insulated and finished space downstairs for Ollie's epic playroom (a Make A Wish of Eastern Ontario project to be revealed on March 3rd) and we decided to have the upstairs space insulated and drywalled to give Abby her own epic hang out space in recognition of the amazing thing that she did to save her brother last year. It also gives us space for the kids as they are getting older, will want friends over more when COVID is finally gone and allows us to move toys and crafts back there to recover some space in the house. 

Here was Abby's attic space before...

Used for storage of seasonal things mostly...

Thanks to some help from a contractor, our own little COVID project

took shape...

And large enough to hive off some storage space for the many seasonal things we still needed to keep after the major purge.

Out of found space, Abby's Epic Clubhouse was born...

Economically done with part of what was left from Ollie's Critical Illness Insurance money (the rest was invested for his future and in Lego and Beyblade cabinets for his space), but beautiful and she's pleased...

Now completed and even daddy likes to hang out there (partly because she has his old/never parted with papasan chair from his bachelor days)...

Everything a soon to be teenager could want...

So our hands are raw from assembling Ikea furniture, but our kiddos are healthy and happy with more excitement to come in the coming weeks. Mario has worked so hard on finishing both kids' spaces and we can't wait to see Ollie's finished with everything from Make A Wish.

As for me, I'm doing okay. I've had some really good days and a sprinkling of anxious or emotional days in between. Having the epic clubhouse project to occupy my "free time" has helped me not to overanalyze or play the "What if" game too much. I am just trying to find a balance between just dealing with today and not being afraid to plan for the future again. The clubhouse has been a good short-term project to satisfy my craving for returning to my natural planning self without being too far into the future. I'm not sure if I'll ever truly be able to go back to being my long term planning self without fear of the bumps in the road that may mess up those plans. We certainly didn't expect the last few and they've all taken way longer than expected to get over. Not sure we'll ever truly be over them. For now, I'm focusing on the short-term future and grateful that we have one with Ollie to look forward to.

Faith In a Better Tomorrow

I have not been okay today. I knew it was coming and tried not to make a big deal of it or to let the memory of January 25th, 2020 increase my anxiety or sadness, but it was too much for my battered brain and heart to ignore.

This was the worst day of my entire life last year. Worse even than diagnosis day. On this day last year Ollie had gone blind, I was told he had relapsed in his brain and spine, had to tell Mario and Abby, heard that he'd need radiation and a stem cell transplant, and he was transferred to ICU to manage his incredible pain and blindness. 

How do you ever forget your seven year old crying that he felt he was dying and begging you to make the pain stop? How do you forget having to cause your husband and daughter incredible agony because you had to tell them that lymphoma was trying to take over your baby's brain? How do you unremember sitting in a room of doctors who told you that they had no idea why your son was blind, if he'd ever recover any of his vision or if their treatment would definitely get him into remission for the stem cell transplant he'd now need?

I'll never be able to unfeel any of the fear, anxiety or sorrow that I felt on this day or throughout this week last year. I've never been so afraid in all of my life. Diagnosis was scary, but also a relief as we finally knew what it was and had a plan of attack. We were told it was a very treatable form of lymphoma and the ALCL 99 chemo protocol worked in about 75% of cases. Great odds we thought! 

Never did we imagine that he'd be in that dreaded 25% for whom it wouldn't work with the basic 6 rounds of chemo. Relapse and blindness came out of nowhere and thumped us on our butts good. For a brief time I was really feeling desperate and uncertain that he'd make it. My faith had been strong, but felt shaky that week. When I think back to that week I am always, reminded of "Footprints in the Sand" whereby I now know Jesus was carrying me. In retrospect, God sent me help to bolster me and prop up my faith. He sent me incredible messages of love and support from so many people. He sent dear friends to feed and check on Mario and Abby while they were ill.

He also physically sent me: 

- Roisin and Rich with gifts and hugs from St. George on the very day we were moving to the Pediatric ICU and were so overwhelmed;

- Nurse Kim in the PICU to help us through the night he was having seizures that I thought might be a stroke and to insist the next night that I take a parent room to get some real sleep for the first time in over a week while she and another nurse stayed with Ollie non-stop;

- Maria and Toni to nurture me and give me emotional support and physical respite when Abby and Mario came down with strep throat the same week that Ollie was in ICU;

- Vic and Jenna to bring Ollie out of his pain-induced coma-like state to show me my boy was still in there;

- Nurse Maddie whom we loved from 4 North with us in the PICU during a floating shift to help us through some difficult procedures that week;

- Jamie who actually worked in PICU, but was not assigned to us came to see us during her shift every day we were in the PICU bringing fresh fruit, snacks and the best and most needed hugs.

And there were so many other Godwink moments that I now understand to be signs from God that He was with us in our worst moments. 

That week changed the trajectory of our lives forever in countless ways. Naturally the blindness after a full year has completely changed how we support and parent him, how we feel now about ability (not disability), and how we help him to navigate and view the world. But it also changed our family's genetic footprint and our appreciation of medicine and science. That was the week we all went to have our HLA matching done to see if any of us were a stem cell match for Ollie. It started our less than smooth path to stem cell transplant and in the end made us all believers in the powerful combination of faith, science and medicine. 

He had another chimerism test last week. It's the fourth since transplant 6 months ago and it's still 100% Abby's cells. His "Abby treatment" has been unbelievably successful after so much agony and fear. His oncologist says that they've rarely seen a transplant (especially a half match) go so well and they wish they could bottle Abby's cells for others. She does, too. 

It's like these monumental days are now etched into our DNA and sometimes even without knowing why, each of us has reactions to the memories (in my case consciously, in the case of Mario and the kids, subconsciously as they don't remember the dates like I do). Over the last few days each of us has had our moments of freak outs and melt downs that are seemingly unrelated, but I know that they are connected to last year. Whether I somehow give off some subliminal signs or secret code that we should all be remembering these milestones or my anxiety and sadness simply adds to their underlying and omni present similar feelings, I don't know. I do know it's hard and that as my therapist says, it's also necessary to remember and feel it all to work through it and get past it. 

Other cancer moms tell me you never forget, but it does get easier the farther you get away from cancer treatment. The thing is, you never get away from it. The long term effects will always be with us and as Ollie grows up we'll have other potential physical side effects to contend with. 

Today he had an ultrasound on the back of his neck. On the very day that last year his relapse was confirmed and he went blind. What kind of cruel irony keeps putting me at CHEO for tests on already difficult days? It can't be random. So it must be for a reason...maybe to remind me of how strong we are? To show us how far we've come? 

Maybe it's to give us better memories on these days going forward. Today we heard that there is no bump in the ultrasound and our radiologist and oncologist believe it's a simple knot in his muscle. We're going to keep an eye on it, just in case, but unlike that first ultrasound on his originally very visibly evident bump on his neck, they saw nothing to be concerned about. Still, the initial fear in Mario's eyes when we got home and Ollie started talking about the radiologist coming in to look at it himself made me want to weep or rage that this anxiety and the unknown will always torture us to some degree. Thankfully I was able to reassure him that the radiologist saw nothing and a call shortly after we got home from our oncologist confirming this was comforting. 

So we've had an emotionally exhausting day, but it's turned out so much better than this day last year, so we'll take that as a win. I'm not okay, but I am getting better slowly as I work through the last 15 months of fear and sorrow, one day at a time. January 25th, 2020 took a lot from us, but it didn't take our Ollie or our faith.

For those of you who tell me we remain in your prayers, thank you so much. Days like today are why we still need them and are grateful for them. 

Steroids, Obsession and Exhaustion (Part 2)

Enjoying Valentine's cookies made by my dear friend and former boss, Ann.

Last night and today were WAY better than yesterday. The reduced steroids and new anti-anxiety meds are working. He slept most of the night, had a pretty good day and was in better control of his emotions.

He asked the Child Life Specialist, Maryse to do a few Valentine's crafts with him, had a good session with the physiotherapist (he's even been practicing his exercises), and even had a good chat with the psychiatrist.

When asked how he was feeling, he replied, "cooped up" and "far away from my friends". Based on this, Child Life and Psychiatry allowed him to have a special visit despite his isolation. He chose Catherine, who is a friend of the family's and has been Ollie's babysitter. As he explained, "...she's over 14 so can come to CHEO, but is still like a kid." So 16 year old sweetheart Catherine and her amazing Dad, Stephen dropped everything and rearranged their schedule to be here for him. Stephen took Ollie's stalker-like call today gladly and didn't hesitate to promise he'd make it all work. 

Ollie giving Catherine the Valentine and bracelet he made for her. This is my sweet and thoughtful boy again.

This family (including M-F and Francesca who have also been here every step of the way with us) are good people and have been so good to all of us throughout the last months. Definitely glad to consider them family.

Ollie is sleeping peacefully after a good day and I am writing and researching more drugs to inevitably fight with the insurance company about covering. 

I did met with genetics yesterday and neglected to share that, but will do so in another post soon. 

We have our video conference with Sick Kids Hospital on February 25 and will know more about next steps then. 

No idea when or even if we'll get home again before round 4 is supposed to start on the 28th. The doctors are hopeful that we might be able to get home for a few days. In the meantime, we're working on getting a few afternoon passes at least to get home for a few visits if we can. Will keep you posted!

Finally we, have lumbar puncture number 8 tomorrow. Hopefully 8th time is the charm to banish the lymphoma. 

The Matching Game

It's funny what you can see in someone's eyes...joy, sadness, confidence, pain, mischief, anger, laughter, fear, exhaustion, determination, defeat. When I look at this pic I see mainly the negative stuff with a bunch of determination. Yesterday I looked in the mirror and saw rapid aging and pain. Today more determination. There's fear and determination in all of our eyes in this photo. Likely because as scary as it all is, we three were together without our fourth so that we could have a test to see if any of us could save his life.

We all still look exhausted, though. How could we not?! We are being asked if we are sleeping much. A bit. Last night Abby and Mario went to bed super early and slept better when they knew Ollie was out of his procedures. When Ollie was comfortable the ICU nurses insisted I take a parent room in the adjoining Ronald McDonald Family Lounge to get some real sleep and they promised to come and get me if he needed anything. I slept 6.5 hours as woke wondering why no one had woken me. Turns out Ollie slept that whole time, too meaning he had a better night as they gave him a seizure prevention medication just in case. 

Ronald McDonald Family Lounge Parent Room #3 (of 4). Sofa folds down so you're not so cramped on a single folding bed chair like rooming in with your child.

He did wake up very upset to have a feeding tube and catheter in though, and was hard to console. I think today I have been more patient than ever in my life. So I guess I am learning and getting better at it because I cannot be upset with my baby with everything he is dealing with right now.

He had a test this afternoon on his eyes to see if the optic nerves were working or not. The CTs and MRI did not show any reason why he should not be able to see, yet he is still blind. Thankfully Ollie slept through most of the test. Neurology came by and told us the test proved that he absolutely cannot see anything, but Seville they can see that the signals from his eyes are getting blocked in the optic nerve fairly close to his eyes, they can't see any evidence that they are actually damaged. In short they cannot see a medical reason why he cannot see. So they can't tell if it will be permanent or not. We can deal with permanent blindness if that's the way it turns out, but I have hope that because they don't see damage, it will resolve once we get the lymphoma out of his brain.

On that front, the lumbar puncture (LP) last night showed that the lymphoma cells that were at a level of 900 when they did the first LP are now down to 100! So the inter-thecal chemo that they're injecting into his cerebrospinal fluid is working and will likely be done again tomorrow.

Mario and Abby met me in the CHEO lab this afternoon so that we could all be tested too see if any of us are a bone marrow match for Ollie. I went first and was done in under 3 minutes. 

Abby begged Mario to go next because she was a bit anxious. That was not a great idea as he has the worst veins and they poked him in two different places and got nothing. Abby was stressing that same would happen to her, but I assured her she had inherited my good veins. 

Finally the technician sent Mario to another technician who made out third time lucky for him while at the same time Abby was being hugged by me in the other room while she bravely got hers done on one like mommy. She was apologetic about her fear about it and told me it wasn't really about the poke, but just that it made everything so real. So wise for 11 years old and so unfair that she has to even think about whether or not she can save her little brother's life. 

She also desperately wants to see her brother, but we've had to ask for a special exception to the sibling ban that CHEO has during virus season. We're hoping by the weekend she'll feel well again and be able to come up and visit him for the first time in over two weeks.

Now we wait up to two weeks to find out of any of us are a match.

We have no idea when we'll be going to Sick Kids Hospital in Toronto yet as we don't even know if we have a donor yet.

There was also an EEG today, but we have no results yet.

I had chance meetings with friends Jamie G., Kim A. and  Cata C. today at CHEO so the hugs were all so appreciated! A call from super mom Samar whose son had leukemia four years ago was helpful, too because she can relate on a level like (fortunately) few really can.

Ollie also asked to see his Aunt Jenna and Uncle Vic, so they came by tonight. It was a beautiful thing. Ollie who has been so mired in his pain and suffering perked right up and had totally articulate and normal conversations with them. His day nurse was shocked as he hadn't been lucid all day. Basically he just needed some normal and not to be treated as the patient for a bit. It reminded me that my bright and funny little boy is still in there and he's not completely broken from this.

So all in all, not a bad day. Again my idea of bad has shifted I guess because right now any day where there isn't a new symptom or pain is an okay day.

Darkness, Anxiety and Morphine

This is Ollie lying in a dark room after begging us to take his nausea and headache away.

I am not trying to take horrible photos of my son's suffering, but in the interest of raising awareness of lymphoma and childhood cancer and their affects, I need to be truthful about what it's like for him and for us going through this. 

This is day 5 of fever, nausea, headache and diarrhea. Many of you are probably battling same at your house with your kid or another loved one. It always feels rotten to watch someone you love be ill. It's worse still when you don't know how strong they really are because they've been undergoing chemo for months. 

We are fortunate in that Ollie's red and white blood cell counts, neutrophils and platelets are looking good. We just don't know when the fever will finally break and allow us to see the proverbial light at the end of the tunnel. Plus our tunnel leads home for a few days and then brings us back here again next Tuesday to start our deferred round 3 of chemo. 

Thankfully Dr. Abbott (the head of Oncology/Hematology whom we hadn't seen since the day we were diagnosed) was on rotation this weekend and gave Ollie the choice to stay after his fever broke and start chemo as soon after as possible, or go home for a few days to rest and prepare mentally to tackle round 3. Ollie chose home and is anxious to get there. That can't happen into he has been fever free for at least 24 hours.

The occasional vomiting, diarrhea, and even nausea aren't so bad. It's the headaches that are brutal. I've always gotten terrible headaches and had migraines since I was 10. It seems my little warrior unfortunately takes after me in this way. He has begged for medication to get rid of his excruciating headaches and since chemo patients can only have Acetaminophen (Tylenol), but never Ibuprofen (Advil), pain relief options are limited. So we've had to resort to morphine a couple of times. Morphine always seems like some end of life palliative drug that is given, not something to ease a headache. 

Add to this the anxiety that Mario and I have...what if it's really lymphoma in there causing this? We know logically that his first scans and lumbar puncture showed that he did not have lymphoma cells in his blood or his cerebral spinal fluid (meaning not in his spine or his brain) and that his very first day of chemo treatment on November 28 (all lymphoma dates are now burned into my brain) they injected the chemo drugs into his spine as an insurance policy so it never gets in there or to his brain. We know these truths, but when you have too much time to think as I do watching him in hospital and Mario does when Abby goes to bed and the house is quiet, your brain struggles to accept the logic, always finding the fear easier to believe. Ollie had updated CT and PET scans last week, but we're still waiting on results to ease our minds.

So we wait and try to be patient, making him as comfortable as we can, trying to keep him from getting angry about being here so he doesn't waste what little energy he has fighting. Today he told me it was all my fault as I lay beside him, running his back and head trying to get him through a tough afternoon. Reluctantly as he felt calmer from my touch and patience he admitted it wasn't ALL my fault. LOL People say motherhood can be a thankless job and in this moment I was feeling it. A dear friend today told me he'll appreciate that we did everything to save his life...when he's 25. So there's that the look forward to! 😜

You also start becoming a hypochondriac yourself, washing hands constantly, hugging but not kissing him, no sharing of food and not breathing on him. Mario and I have worn masks here constantly so as not to expose him to anything else and not to get this virus ourselves and take it home. My stomach feels off today and my first thought was I caught it, but I feel fine otherwise, so am thinking it's likely just my anxiety around all of this. 

Don't get me wrong, we've got this, but it is tiring and we want this battle to be over so we can ready for the real one next week. 

I also miss Abby desperately and she is sad that we're not all home together. We video chat, but it's not the same as snuggling at home. 

Despite all of this, we are okay. Perspective is everything. I have been chatting online with Kelly, mom to #StartwithHillary (startwithhillary.ca) @StartwithHills who is a champion for stem cell donation and getting swabbed because her daughter has Aplastic Anemia and will likely need a stem cell transplant in the future. They have to worry daily about whether or not their daughter will have enough blood to live or need a life saving transfusion. They were exactly where we are now for 27 days when they first diagnosed her, so if she can do 27, we can do however many we have to to kick this bug and be ready to battle lymphoma next week. 

I promised her mama I'd tell dozens more people about Hillary to get more folks out to get swabbed. If you're between 17 and 35, please consider getting swabbed. It takes moments and you could save a life. It could be Hillary's or my son's if he needs a stem cell transplant later on if chemo doesn't cure him. It also becomes part of an international registry so you could save anyone really! Learn more at: https://www.blood.ca/en/stem-cells

Until the fever passes, we're here and making the best of it. Hope you are home with loved ones and virus free!