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. 

'Tis the Season

We've been silent since Monday, because we've been enjoying every moment of Christmas at home. 

My mom and stepdad arrived on Christmas Eve and the kids were beyond excited. We often have a quiet Christmas here with us and Mario's mom and they're always lucky, but there's nothing quite like the chaos of a family Christmas. Last year for example, we were in California with my mom and stepdad and my brother's family. My mom has said many times in recent weeks how grateful she is that we all took that trip given what we're dealing with this year. So Gamma and Bumpa were here and Christmas felt like a special occasion, which we all really needed this year. 

Sadly, Mario's mom was down and out with a bad cold that she didn't want to pass on to any of us given how dangerous it could be for Ollie. On Christmas Day, Mario took her a Christmas dinner and her presents, wearing a mask and gloves to protect us all. That's our new reality and it's hard not to offend anyone given the precautions we have to take now. 

Even in mass I felt that way. Abby sang with a special choir on Christmas Eve at our church, so mom and I went to hear her solo. She did beautifully and it brought tears to my eyes. Multiple times during mass after touching surfaces and after shaking hands (sharing the sign of peace) with those around us, mom and I used hand sanitizer and I'm sure people around us who didn't know our situation either thought we were hypochondriacs or very rude assuming everyone around us had bad germs. Unfortunately my son's health trumps anyone else's feelings or assumptions right now.

I find myself frequently feeling Ollie's forehead for fever. If I wake in the night, I go to his room and check it. When he wakes, I check it. He may end up a hypochondriac himself after this! LOL

We are so grateful to so many friends who are being so understanding and getting flu shots for us, using the hand sanitizer when they pop by our place and step inside the door and don't come around when they are feeling unwell. These are all little gestures that they are feeling for us and helping in ways that they can. 

So Christmas was lovely and the kids were happy with their (too) many gifts. We watched movies, played games, visited with my parents and just enjoyed being together. 

On Boxing Day Ollie did get a bit of cabin fever and was sad and mad that he couldn't go out someplace in public. He and I had a long cuddle and talked about trying to change our definition of fun and thinking about fun things we COULD do together at home. We made a list of things and everyone participated in things like laser tag and give and go seek, even Gamma and Bumpa to his delight. 

On the 27th Gamma and Bumps went back to Southwestern Ontario and Ollie and I had to head back to CHEO for his regular Friday PICC dressing change. It was a hard afternoon with him refusing to cooperate despite the fact that he's had this done 4 times already and is not that big of a deal. It's the fact that he doesn't get to control what is happening to his body that upsets him. When he says no we still have to do it to protect him. 

I also think it was reality returning because he knows we'll be back there again for 6 days as of Monday for round 2 of chemo. He was super angry at me for making him go there and very mean to me as a result. Normally I can take it and tell him to be bad at me versus the doctors and nurses who are trying to help him, but I was sad for him and tired and frustrated. The child life specialist helped me to calm him somewhat and got us out the door after a lot of stomping and punching walls (him not me). When we got in the van which I guess is our safe place now, he began to sob. Then I did, too. 

I haven't let myself do this too often. Yes, I'm often in tears and swiping them away (usually at the kindness of others), but I've only let myself have a couple of big cries and mostly in the shower when he can't hear. I don't want him to think he won't make it and that's not what I think either. It's just that this journey is so often overwhelming and even the strongest of us need to let it all out to cleanse our emotional well being from time to time. So as I sobbed, Ollie calmed down and asked me if I was okay and started apologizing for making me cry. My boy is very empathetic and is like this with his sister when she is sad, too. I explained that mommy tries to be strong for him and didn't want to force him to do these things, but wants so desperately for him to be well that she'll do even the hardest things to make that happen. That I know it makes him unhappy now, but we must endure it so that we can all have a long and happy life together after cancer. Finally we talked about how anger and sadness are okay and normal, but we can't hurt each other when we feel that way. Short-term pain, long term gain is pretty tough for kids to get. 

So we hugged and headed to Tim Horton's for a drive through treat and agreed to go home and enjoy our two days off at home before going back Monday to kick cancer out some more. He says he wants to start the Kids Kicking Cancer martial arts in the new year so that maybe that can help him not to feel so angry. So young and yet such a wise old soul already. 

We are okay and happy to have had this time at home. We'll update you on Monday on round 1. Hugs to all and enjoy your time together!

Intuition, Fever and Fear

This is post number two because today's events warranted their own post.

Last night everything was fine. Ollie went to bed snuggling with me in his new twin over double bunk bed. He seemed warm to me, but did not have a fever. As I lay with him and he fell asleep he was restless and very sweaty. I got up and prepared Abby's lunch and did a few things, going back to check on him a few times. I told Mario I was going to bed and felt I should sleep with him as I fear fever in the night right now and had a sense something was off. 

Fever requires immediately going to CHEO Emergency because his immune system is shot since the chemo and he is now what they call neutropenic. This means that his white blood cells (WBC on a blood test) are very low and any illness is dangerous because the body has no ability to fight them off. 

So my mother's intuition told me to sleep with him and several times in the night I woke to a very sweaty kid and took his temperature. Each time it was normal, but I knew something was not right. When we woke about 7:30 to get ready to go to CHEO for his usual Friday PICC dressing change, he felt warm, so I took it again and it was a bit high. I waited a few minutes until he was up and had cooled down from the warm covers and took it again. Higher again this time and definitely a fever. So plans changed rapidly. I called our Oncology Coordinator to let her know and she told me to come to Emerg and she'd alert them.

I sent Abby and Mario off to their regular days, promising to let them know any news. Ollie was otherwise well and cooperated to get to CHEO, walking himself into Emerg. Once there we were triaged immediately and shown into an isolation room to minimize our exposure to anything else. That's the fastest we have ever been triaged at CHEO. At least cancer patients get VIP emergency treatment. LOL

We were quickly visited by nurses and a doctor who checked him all over for any sources of infection (nothing obvious). Everyone was gowned and masked as a precaution. Bloodwork was drawn rapidly, a urine sample taken, a team came down to change his PICC dressing, a second doctor from oncology arrived to do more checks. IV's of antibiotics and fluids were started. 

The doctor told me he'd have to be admitted for 48 hours for meds and observation. Admissions arrived and had me sign forms to admit him (again so glad to be overinsured and always paid for the full hospital coverage).

I guess I'm getting used to all of this as I found it all comforting because it reminded me we were in the best place for him to be safe, whereas weeks ago it would have elevated my stress levels. 

What did stress me out was having to tell him we'd have to be admitted again. To say he took it badly is an understatement. Sadness, anger and complete defiance ensued. There was yelling, wall punching and absolute insistence that he was going home because round 2 of chemo wasn't starting until December 30. Despite everything I could not calm him by myself and it took me, two nurses and a child life specialist to sooth him and bring him down to a manageable level. 

One of the ways they did this was by talking about what made him angry and suggesting we make a punching pillow and draw a target and write those words on it. 

Luckily, one of the nurses who came by was also our POGO Interlink Nurse, Graham who had stopped by our place on Wednesday to help with paperwork and had bonded with Ollie over Beyblades. Graham had also gone into the school earlier this week to teach his and Abby's classes about lymphoma, so we recognize that he has done a lot for our family this week. So Graham also engaged Ollie in a discussion about Beyblades, taking his mind off the fact that he was being admitted. 

The thing about Ollie is he is passionate like Daddy, but pragmatic like Mommy. So after the room had cleared, he and I had a good chat about how powerful his brain is and if we prepare for the worst and hope for the best things generally turn out fine and we aren't disappointed constantly. He asked me what the worst was and I said we'd be in hospital a few days, but maybe less and we could still hopefully make it home for Christmas. Then my bright, sweet pragmatic boy said he had done eleven days already and two days wasn't bad and we could do it. I pray that it's only two days and I don't have to disappoint him and ruin the lesson.

So we finally got a bed on 4 North after lunch and with a new positive attitude, we arrived in our new room. To his delight it's a private room (we were alone in a double last time) and has extra amenities like our own mini-fridge (please send wine and cheese...LOL), a PS4 and TV for it in the room (we borrowed a communal one from the playroom last time, but apparently these were donated for isolation rooms) and the crowning glory...his own tub (he had to have a bath down the hall last time and found that unacceptable...imagine having a bathroom in your room with no bathtub!)! He exclaimed that this really was at last more like a hotel.

No sooner had we settled in then a special visitor arrived to bring some presents and spread some Christmas cheer. See below...

Got to meet Brady from the Ottawa Senators who was even a good sport when he learned the Sens are Ollie's number 2 team and the Leafs are his number 1 like Daddy. 

Now Ollie is napping and I am drinking a coffee from Keurig pods that some Christmas angel left in the kitchenette for everyone and thanking God for them and the fact that there is even still some sugar and cream that I left behind when we left here not quite two weeks ago.

None of this is what we planned, but as a strategic planner, I know the importance of an "evergreen" plan that is constantly being adapted to accommodate changes and also of always having a Plan B and sometimes even a Plan C. So we'll hunker down and watch our new subscription to Disney+ this weekend and pray that by Monday we are home and cosy again. 

Sending you all love and prayers for a lovely weekend before Christmas. Please be safe, be good to each other and remember that the perfect outfits, food, gifts and decor don't matter this or any Christmas. It's being wherever you are with people you love and enjoying time together.