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.

The Last Battle

The last handful of days have been eventful and exhausting. On Sunday we learned that our CHEO friend little Malcolm passed just ten days shy of his first birthday. His brave mama was my first real friend at CHEO and Ollie adored Malcolm. They had learned Friday that treatment was not working and they were preparing for end of life. Gut wrenching. 

I cried so much over those three days. I mourned for a beautiful family who have fought so fiercely for 6 months, living far away from home, constantly in hospital and still always being so friendly and kind to everyone around them. I wept for little Malcolm who loved sitting on the nurses laps while playing with a calculator. We had joked that he'd be an accountant for sure! I was sad for his sister who not only lost her brother, but 6 months without her whole family together. And I tried desperately to understand why some of us get a chance to save our babies and others don't. Why was his last battle one he couldn't win and ours is win-able?

I was indebted for the chance to save Ollie before, but now I feel like we really have to do this for those that don't make it, too. That we have to fight even harder to be successful in transplant to vindicate the loss of brave warriors like Malcolm. I'm not sure how Guardian angels really work, but maybe Malcolm is now Ollie's. This thought comforts me.

So the week had already started off difficult and then Ollie had multiple tests at CHEO each of the last few days so that Sick Kids Hospital is totally certain we're ready for transplant. 

Monday's CT confirmed that there is no evidence of systemic cancer. This is a huge relief. Now we just have to keep it out of his brain until radiation begins on July 14. 

Tuesday Ollie was supposed to get bone scans done to confirm his bone density as they can see on the MRI and x-rays that his bones have thinned and suspect that he has osteoporosis from the chemo and prolonged steroid use. 

They can do a calcium infusion called a bisphosphonate every 4 weeks that will help, but this could mess up his radiation and stem cell transplant, so we have to wait until after. 

Alas, after doing the first scan (see photo below), we could see that the contrast that Ollie had for the CT on Monday was still present, so they were unable to do the baseline scans because the bones would appear thicker. Hopefully we can do them at Sick Kids next week.

The rest of the tests were rough Tuesday because Ollie was tired and grumpy and frankly, scared about transplant. This makes it all so real. 

He also had a GFR test to check his kidney function, an Echocardiogram to check his heart, bloodwork, a dressing change and a COVID test. He fought the COVID test and after many attempts to persuade him to cooperate, four of us had to hold him down while he screamed, cried and kicked. He was so angry. 

Afterwards he cried in agony and said he was so tired of being tortured and didn't want to do it anymore. In his dramatic 8-year old way he insisted he'd rather die than be sick again and not have control over his own body. I cried with him over the injustice and indignity of it all and told him I hated to force him, but we have a chance to get well (a chance some never get) and we're not going to let it pass us by. 

All the while, the empathetic child life specialist, Manon was with us and rubbed my back and Ollie's intermittently as we both cried. She and the nurse, Sue (who had been there for our very first procedure which coincidentally was a bone marrow puncture) were kindness personified and I was overwhelmed with gratitude for these strong women who help us

with the hardest things imaginable and still come back and do it all over again the next day. It takes a special kind of strong and dedicated person to work with sick kids and their families day in and day out.  They are all angels on earth.

Thankfully there have been good moments this week that make up for some of the bad. Abby participated in the Great Make A Wish Campout to raise money to help fulfill the wishes of Wish Kids like Ollie and our friend Hillary. 

The rain came, but was short lived and left a double rainbow in its wake. We raised $1,100 thanks to the generous donations of friends and family. I feel like we're always asking you to help, but you keep showing up! Hopefully going forward it'll be just this kind of help we ask for to help others instead of ourselves.

Ollie was sad not to be able to camp out, so he and daddy made a tent around his bed and had epic Beyblade battles.

Ollie also had two osteopathic treatments this week. Dear family friend Elliot Vlad offered last fall to treat Ollie for free and I admit, I knew little about osteopathy. I did some research and found that osteopathy can at the very least help cancer patients to manage pain and discomfort and relax. That was enough for us as Ollie needed all the help he could get. Elliot began treating Ollie in January, coming to the hospital and doing treatments, often when Ollie was sleeping. What we found was every time Ollie had a treatment, he'd sleep better, the next day he'd have way more energy and he'd be able to do things he hadn't done in a long time (like take a long walk or climb stairs). 

At one point Mario was with Ollie during a treatment. He didn't know Elliot that well and he is a natural sceptic, but this is what he texted me after the treatment. 

Ollie's feet and legs have been very swollen because he is retaining fluid and his lymphatic system is blocked up from the steroids and chemo. So Elliot saw Ollie Monday after his regular day at his and his wife (and our dear friend) Tamara's clinic, Life Therapies and also gave up part of his Canada Day yesterday to squeeze in another treatment. 

The difference is always impressive. Ollie hadn't walked up the stairs without assistance in days, but Monday night and since he's had no issue and says his feet don't hurt anymore. He's able to get his regular shoes on for the first time in weeks. On Tuesday at CHEO he was his old full of beans self and even his oncologist couldn't get over his energy level and how well he was moving.

Most important, Elliot has schooled us on what we can do at home to keep him moving well. Ollie is also under strict instructions to wiggle and shake his body a lot and he is happy to oblige.

I have long believed that it's generally a combination of therapies that heal us and wish that hospitals and governments that make decisions about what is a covered treatment and what is not could better understand the intrinsic value in things like osteopathy. We are beyond thankful for Elliot and Tamara (and their sweet kiddos who are friends with ours) for sharing their skills and for their ongoing kindness.

Abby has been readying to leave again, knowing she likely won't see her friends in person all summer. I am struck again by how much sacrifice she has had to make this year to get her brother well and how most of the time she accepts it with grace.

Chewbacca (the cat) seems to know that his warrior buddy is leaving again and has been his constant companion lately. Ollie is going to be so great with his CNIB Buddy Dog when our turn comes to get one after he is well!

The selfless folks at Gabriel Pizza came through with half baked pizzas to freeze and take for the journey to Toronto. Ray Skaff, Mike and team at their Vanier location on Montreal Road arranged it all and were so gracious and sweet when I picked them up yesterday. 

Also yesterday on Canada Day, I got a call from my lovely sister-in-law, Nikki to tell me that her brother and mother in Blenheim, Ontario (my hometown) had seen Ollie's Pizza on the Marilyn Denis show. So I went online and watched and sure enough, they featured it as a Good News story! You can watch it here at 35:38. So we've gone national with our little story about a boy, his pizza and helping kids fight cancer through Candlelighters. 

When I started this blog 8 months, 116 posts and almost 99,000 views ago, my main goal was to raise awareness of childhood cancers such as his very rare Anaplastic Large Cell Lymphoma. Never did I imagine that we'd go national or have followers from around the world. Mario and I were teary yesterday watching our story on The Marilyn Denis Show and we are awestruck that so many of you are interested and following along. Thank you for validating my labour of love.

So we finished packing what we could last night and fell into bed exhausted.

Today we're on the road to transplant. It feels surreal but so good to be doing this again. I feel more confident and we're all less stressed this time, knowing better what we're getting into. Ollie has been great the last two days. Getting to his place of strength where he knows that he has to do more hard things, but pragmatically accepting that he just needs to get them done. He is a model of adaptability, perseverance and determination. 

Thanks as always to our village for equipping us for this last big battle. From bringing us dinners the last weeks and sandwiches for the journey, taking care of our home and zoo of pets while we're away, offering to take Abby in September if school starts normally, packing us up, and sending so many messages telling us you're behind us, we know how blessed we are and that we've gotten this far due in large part to your love and contributions. Ottawa, we'll miss you and be back as soon as we can with a well Ollie.

Toronto, we're on our way! Thanks for already helping us by making masks mandatory in indoor public spaces starting next week! We look forward to a much better experience with you this time!