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. 

Half Re-birthday

Happy 6 months post stem cell transplant to Ollie!!!

On this day +184 days or 6 months ago from July 20, 2020, Ollie received his sister's lifesaving half match stem cells after an unbelievable battle with Anaplastic Large Cell Lymphoma ALK Positive and two relapses in his central nervous system. 

We can hardly believe that it's already been 6 months. This is another important milestone in the stem cell transplant journey in that if all is well at this point, the re-vaccination process can begin for him. Normally if COVID-19 weren't with us, this would be the point at which Ollie could start to have some interaction with friends and family again. Sadly, that will have to wait until after COVID.

As for Ollie, he is mostly excited to be able to eat deli meats (no Subway for 6 months!), berries (not allowed on low bacteria diet) and to be able medically to get his Buddy Dog from CNIB whenever they have one ready for him.

On Monday we were at CHEO for 5 hours for multiple tests and checkups. 

He had an electrocardiogram and an echocardiogram, a bone density test, and an x-ray of his pelvis and hips. 

In addition to his regular bloodwork, he also had another chimerism test to verify that his sister's stem cells are still 100% functioning in his body. They have been each of the three times he's had this test and his oncologist/post transplant doc confirms that his sister's cells are the overachievers that Abby said they would be. 

He asked Daddy to watch him have his blood tests to show him how brave he is.

He also had an additional blood test to see what (if any but apparently there is a slim chance of having any) antibodies he may still have or have gotten from his sister's cells. This will be used to determine the re-vaccination schedule for him to start as early as next month! Like a newborn baby they'll start with the non-live vaccines and by end of his first year post transplant will finish with the live ones when his new immune system is even stronger. 

Only after he is vaccinated and COVID is gone will he be able to physically go back to school (and I to work).

 He capped off his CHEO visit with a chat with the social worker to follow up on his pre-Christmas request to meet her. I sat outside the room (door open) and listened to music and talked to the doctor while he had some "privacy" to talk about feelings. I am glad that he's seen Abby and I talking to mental health professionals and sees value in it for himself. If only all children were taught about mental health. Only in this way will he be freed in adulthood from the emotional chains that go along with repressed memories and feelings.

Physically he's been well although a bit tired over the past week and Mario did find a little bump at the back of his neck last week. He's having an ultrasound next Monday to ensure it's nothing but as the parent of a cancer survivor, the fear of recurrence never leaves you. I am actually participating in a research study about pediatric fear of recurrence in survivors with the University of Calgary right now and will share more on this as it develops.

The irony is that as the parent you have to assuage their fears and reassure them that it's likely nothing to be concerned about at the same time as your own alarm bells are ringing and you're trying to keep your own anxiety under control.

But we know that there will always be at least little bumps in the road and we can't choose a smoother path, so we just have to fight the instinct to immediately put our armour on and ready for battle. This is hard when history tells us we should never let our guard down.

Last year on this day Mario and I were so stressed because Ollie was inpatient very ill with what we suspected but did not yet know was Anaplastic Large Cell Lymphoma in his brain and spine. 

We also suspected, but didn't know yet that he was having seizures (due to a sodium issue called SIADH) and a CT on this day was inconclusive. Five days later he'd be blind and transferred to the Pediatric Intensive Care Unit (PICU). 

It seems bizarre to me that the same week that marks a year since he relapsed and went blind is the same week that we celebrate 6 months post transplant. Perhaps it's God's way of reminding us to focus on the good and to remember to be grateful despite everything bad that happened. 

A dear friend gave me this stone that she brought back from Florida for me last February after the worst weeks of our lives. She said she had been thinking of us constantly and saw it and knew she needed to give it to me. I have kept this stone on the shelf in the bathroom since then. Some days when going back to the hospital after spending a night with Abby I'd put it in my pocket and carry it as around for a few days until I felt strong again. It would also make me laugh because pre-cancer Ollie was always coming home from daycare with rocks in his pocket, so it was connected to him in more ways than one. Today as I brush my teeth, wash my face, wash my hands, or even clean the bathroom it reminds me that despite the daily fear we live with that Ollie's lymphoma will come back, we need to have hope that it won't and faith that God will carry us all through whatever might lie ahead for Ollie and the rest of us. 

As I tell Ollie when he's worried, we pray daily that it is done and will never come back, but if it does, we know we beat it before and we'll fight as many times as we need to in order to keep him and kick lymphoma out.

For today we'll just put our party hats on and celebrate another milestone reached by our incredible son with the help of our unbelievable daughter's stem cells. 

Hope lockdown is not too hard where you are and trust me, we can all do hard things when we have to.

Vale annus horribilis (Goodbye horrible year)!

Like everyone else, with it being New Year's we are looking back and reviewing the year we've had. Many many times in the last weeks I've reflected on the happenings of 2020 and re-read my blog posts from the past year. Often they caused tears to stream uncontrollably. Sometimes they brought laughter over the unbelievable absurdity of what our life has been like this year. Always they inspired gratitude for all that we have overcome with your help.

Last New Year's Eve Ollie and I had just been admitted to CHEO for round 2 of chemo.

While it's true that we have had a pretty rough 2020, we are ending it with all we need - namely our family together, happy and healthy. Sadly we know families that had a much worse year than we did and have lost so much, like their innocent babies being taken prematurely by cancer and loved ones who succumbed to COVID-19. Our hearts have ached from their losses and our prayers have begged for their healing. Thankfully we also know many strong families who have overcome critical illnesses and their side effects to finally arrive on the path to wellness. 

 Family together after Ollie's successful engraftment during his stem cell transplant.

When I asked Ollie if there was anything special he'd like for New Year's Eve, he asked for a vanilla cake with sprinkles. Fortunately this proved easy to find through Instacart when we ordered groceries. The shopper asked if we'd like to have anything written on it. It seemed to us to be apropos to eat a "Goodbye 2020" cake. This year we have gotten our cake and tonight we ate it, too. 

We also let Ollie blow out "20" candles and make a wish to usher out the worst year of our lives. Again this seems completely right given this past week was actually his half birthday (when they were little we used to celebrate half birthdays because a year was too long to wait for cake!) and technically 6 months in remission for him and in a mere three weeks it'll be 6 months post-transplant. If those aren't reasons to grant the kid a wish, I don't know what would be.

As we ate cake, we talked about what we are grateful for this year and our biggest lessons learned. Here are our lists:

Ollie:

1. I am grateful for my family and friends who love me and helped me to get well.

2. I learned to be grateful even though my treatments were hard because many people don't survive cancer and I did.

3. I am grateful for chicken burgers.

4. I am grateful for my sister who saved me so I can still love AND annoy her! 😝

 Abby finally reunited with Ollie after he relapsed in his brain and finally got out of ICU. This was the day we went to have our blood tests done to see who would be the match for Ollie's stem cell transplant. Abby always said it would be her.

Abby:

1. I have learned that we should all be grateful for what we have today, because tomorrow is uncertain.

2. I have learned about and am grateful for makeup which has been a good diversion for me this year.

3. I am grateful that I still have my brother.

4. I have learned what is really important in life - being part of a family that loves each other.

5. I am grateful that none of us have gotten COVID-19 and passed it on to Ollie.

6. I am grateful for friends who have loved me and made me part of their family this year when mine couldn't always be together.

Family Day in February 2020. First time we'd all been together in over a month. Longest time we'd ever been apart and worst month of our lives.

Mario:

1. I have learned patience.

2. I am grateful for the family that I have.

3. I am grateful for the people around the world, some who I have never met, who cared about and prayed for my family.

The family in Toronto after Abby donated her stem cells and Ollie relapsed in his brain again. Waiting for a new drug to work (it didn't, but later going home for radiation and another new drug did) and trying to make the best of things while we waited and prayed for our miracle.

Dawn:

1. I am grateful to God for saving Ollie with the help of medicine, science and Abby's stem cells.

2. I always worried that Mario or I would become very ill and wondered how we'd weather it without family nearby, but have learned how incredible our friends, family and community are and that they have our backs and have been and will be there when we need them.

3. I am grateful for people who love my children like their own. For those that came to the hospital even when I know it was hard to see Ollie so sick and for those that lovingly watched over Abby and got her through tough times when I couldn't be there. 

4. I have learned that Nurses, Doctors and medical staff are superheroes in scrubs. That they are dependable, nurturing and truly care about their patients and their families. That when you use your voice in a positive, yet assertive way, the best ones will listen and let you help them to save your loved one.

5. I have learned that you can get used to living under the most stressful and bizarre circumstances if you stay hopeful and focused on getting through the next thing you need to do and not look beyond today. As a former strategic planner who is always focussed on long term goals this one was really hard for me.

6. I have learned how strong we all are, yet how important it also is to let yourself be vulnerable and feel your feelings. That feeling and showing them to others are signs of strength, not weakness.

Nurse Joan at Sick Kids Hospital supported us through Abby's 5 hour stem cell donation process. 

Jenna and Vic visit Ollie when he was in the ICU and Abby and Mario had strep throat and couldn't come. I was so grateful for them and two other dear friends who came in our darkest hours and supported us.

Not surprisingly, we're not sad to see 2020 leave as it truly has been our "annus horriblis", but we also realize that we have learned many important lessons and received many blessings this year because of our struggles. 

Wishing all of us a 2021 filled with love, laughter, joy and health!