Success of the "Abby Treatment"

Engraftment is when the blood-forming cells received on stem cell transplant day start to grow and make healthy blood cells. It’s an important milestone in transplant recovery.

As of today, Ollie's had: 

- Multiple days of various blood counts increasing with a White Blood Cell count of 1.59 today;

- Three days of neutrophils being consistently higher than 0.5, so he is no longer neutropenic and has begun to be able to fight infections with his new immune system; and

- Platelets have started to rise on their own so they no longer need to give him transfusions.

So...he's officially engrafted and his "Abby treatment" (as my brilliant friend and author, Vanessa calls it) has worked (so far, as to be clear there are still many milestones to come)!!!

We've all been pretty moved the last few days to say the least. Abby was so excited and told me she knew she was supposed to save him from the start. There's something in my eye...and in my throat. 

Saturday they started the process to get him moved out of isolation. Ollie had a really emotional day, crying a lot at the littlest things. He's like his mama...gets through the hardest things and crises and once he's on the other side of it and can relax a little, he falls apart.  Poor Daddy was spending the afternoon and night with Ollie on Saturday, so much of the emotion was his to manage. 

They got off to a rough start when Mario voiced his concern that they wanted to move him too soon and Ollie got mad saying that Daddy didn't want him to get home earlier and didn't believe he was getting well. Mario's insistence that it was the contrary and he's just being cautious fell on deaf ears. Although Mario reminded me he wasn't the one who was good with emotions, they made it through a hard day together.

Yesterday they moved Ollie back into one of the 5 regular hospital rooms on the Bone Marrow and Stem Cell Transplant Unit. He was pretty psyched to be moving, but once we did he was overwhelmed again. We spent a lot of time snuggling and trying to calm him. Nothing like mama hugs when you're feeling big feelings you can't control.

One great distraction was his Nintendo Switch. Remember when Abby and her friends raised money to buy the Switch for him at the beginning of this journey?! It feels like a lifetime ago.

He hasn't done much with the Switch since he went blind. We did a bit of research in June and found that certain games could be played by visually impaired and blind people. So we dragged it to Toronto just in case, but it's the first time he asked to try it. Daddy got him going on Super Mario Kart Deluxe 8.

Mommy found a reference online to a game called 1-2 Switch that a woman and her blind husband had a blast with, so we downloaded it yesterday and goofed around with it all afternoon! It was just what the doctor ordered! 

He can play almost all of the 28 mini games that come with it, as they're all very active virtual reality type games (like Quick Draw where you pretend you're in a wild west gun fight or Boxing which is obvious or Baseball where one person pitches and the other swings at the ball). Needless to say he was thrilled and kept saying how awesome it was that blind people like him can still play Nintendo Switch! He didn't even mind that much when Mommy won sometimes!

So dear friends of Abby who worked so hard to raise money to buy him his precious Switch, know that he is more appreciative now of your generous gift than even at the beginning. It makes him feel like a normal, cancer-free kid (which is what he is now!).

I think Air Guitar is his ultimate favourite 1-2 Switch game so far.

Ollie's body is still struggling with nausea, vomiting and diarrhea, although less so than before. Doctors say it should all resolve itself in a few days once the antibiotics are out of his system. He's also experiencing some muscle spasms, but his water retention and swelling have gone down. It's the first time in months that his ankles and legs haven't been swollen!

Abby and Ollie have been sad about not seeing each other in over a month and given Abby will be going back to Ottawa before Ollie is likely out of the hospital, they're having a hard time with the idea that it might be a total of three months of separation before we are all together again. So I have asked the Pediatric Advanced Care Team for special permission for Abby to visit her brother in hospital before she leaves for school and they have indicated that this should be possible. Like I tell the kids if you don't ask, you don't get what you need.

On the phone with Ollie the other day when he was so sad and missing her, she had tears in her eyes as she made him promise that he'd be happy because her cells were working for him and everything they'd both been through was worth it. 

Honestly when I think about everything that's happened to our family in the last ten months, it feels surreal. We were a close knit family before, but cancer and our strengthening faith that God would help us through and save our Ollie have cemented our commitment to and gratitude for each other. 

We believe that God brought Mario and I together...two headstrong, independent, resilient people to build a family. Then He sent us both a selfless and determined daughter and a courageous and tenacious son...one to ultimately save the other...and in doing so He has blessed us beyond our wildest dreams. He gave us science and brilliant doctors and nurses to help us get our son well. He has provided us with an army of people to care for and love us through all of this.

In my most desperate moments over the past year I have begged and bargained with God that if He would save my son, I would tell our story and show everyone His goodness. That I would truly be an evangelist and dedicate my life to making the world a better place and sharing His love with others. 

For those of you who may not be believers, fear not! I won't try to convert you. I think our story is speaking for itself. The things that we have overcome are too big and difficult for us not to have had Divine intervention along the way. A prayer chain around the world for Ollie with loving people of so many different faiths participating...I believe it has made a miracle happen for our family.

Our journey is far from over, but we are on the path to physical wellness and emotional healing. Stick with us because the story is not yet done. There are no guarantees in all of this, but today our son is saved and we are celebrating.

Sick Kids VS COVID-19

Tuesday afternoon Ollie had a low grade fever. He's had a stuffy nose, but no other symptoms until the fever. So we contacted Bina, Dr. Alexander's nurse and explained the situation and were asked to come in to Emergency. 

This immediately made us nervous as we knew that as of last weekend, Sick Kids had discovered two kids with COVID in the hospital and 1 nurse. As of Tuesday morning we had learned that one of them had been on a Hematology/Oncology unit. The Bone Marrow Transplant Unit (8B) to be specific. This is on the same floor as the oncology ward (8A) that he has been admitted to before and the Day Hospital (8D) that he has his lumbar punctures in and would be back to this Thursday.

So off we went to emerge with this additional stress hanging over us. On a positive note, at least Ollie's neutrophils are higher (12!) than they've been in 5 months. 

Thankfully this overall visit was a better experience than our first time in emerge. The nurses were kind and efficient. They had a little trouble getting blood out of Ollie' s central line at first so they called in an expert nurse who had the magic touch and made it work. 

They also had to do another COVID swab (Ollie' s third since arriving at Sick Kids and happy to report all three have been negative) and he had a poke for blood cultures due to the fever. He cried a little at each of these, but submitted to them grudgingly.

They started him on fluids and we waited. Eventually we saw the ER doctor who was super sweet and kind to Ollie. She took time to check everything to ensure he didn't have any rash, cuts, bruises or any other possible sources of infection on his body. She then told us we needed a new chest x-ray and after that she'd call oncology and the oncologist on call would be with us when available.

Emergency was much busier than the last time we were there, but still calm. This time though, everyone was using PPE including gowns, masks, surgical caps (with buttons sewn on to relieve their ears from the masks), goggles and gloves. They were super careful to change gowns and gloves each time they came and went. 

X-ray went better this time as we used the one near emergency which was more modern and roomier than the weird room upstairs they sent us to last time. They said they only use that old one when they're really busy or backed up. Ollie was also much better behaved for this one and there were two super nice technicians. Again full PPE used and they were wiping down the equipment including my lead vest as we were leaving. With all the x-rays and CTs we've had, I've never seen them wipe down the parent vest before hanging it back on the wall.

After 6 hours there, with perfect bloodwork, no obvious source of infection and a good chest x-ray, I talked to the oncologist on call about my concern about Ollie being admitted with a known exposure to COVID nearby. I assured her that we were living literally across the street from the hospital and could run him over in his wheelchair quicker than an ambulance could even get to us. She was terrific and so patient with Ollie who was very stressed. Since he was clinically well otherwise, she knew it was best to minimize all exposure for oncology kids, and he had appointments at the hospital Wednesday and Thursday, she decided we should give him a high dose of antibiotics that would be good for 24 hours and have him checked out the next day.

At this point I was thrilled, but Ollie was upset. He didn't want to leave the hospital. The doctor agreed to give us a few minutes as she went to order the antibiotics. We had a long chat about how Ollie feels safer sometimes being in the hospital where he knows nurses and doctors are right there to help if anything goes wrong. Boy did I understand that feeling. This is the crazy thing about a critical illness. On the one hand you never want to have to go to the hospital, but on the other when you've been through so much already where you needed constant medical attention to stay alive, you still feel safer in a place you never wanted to be on the first place. Just one of the cruel ironies of this disease. 

Maybe it is the same feeling that you have after being in prison a long time and getting out? Like you aren't sure you can make it on the outside? The supposed reason that so many re-offend and soon after their release. Or maybe I've just watched too many episodes of Orange is the New Black. 

One thing is for sure, when we're really free of cancer I don't ever wish to be back in a hospital feeling like this again. I can't imagine being those poor families who get back to normal life and then relapse and have to do it all over again. We are sincerely hoping and praying that all of our relapses have happened so close together in a short time to spare us that later.

So I called up the troops because "We fight as one" and put Abby and Mario on speaker phone. They'd been at the condo praying all day that Ollie didn't have to be admitted. We all talked to Ollie and managed to convince him that we were all keeping him safe. That Abby had discovered his bump in the first place and had gone through the pain to donate the stem cells that will eventually save his life, that Mommy had actually diagnosed his specific kind of cancer a week before the doctors did (and she once diagnosed his Scarlet Fever before he saw a doctor - who did not believe her before the positive test confirmed it in his office!) and was the one who recognized he was having seizures in the ICU on January and Daddy who insisted on better pain management for him when they thought he had meningitis and because of that we were transferred to the ICU where they finally figured out it was actually lymphoma in his brain. We reminded him that he was at emerge at that very moment because we were lovingly taking care of him and wouldn't take chances with our most beloved boy. 

So we agreed that Mom and Dad (one of whom always sleeps with him now anyways) would check him every hour just like the nurses and we would come right back if he told us he needed to or we thought he did.

So Abby and Daddy walked over to the hospital at 9:15 pm to walk us "home". 

We fed our ravenous boy and got him to bed. I am still uncertain if we can even order food to the ER as no one has ever suggested it to us even though we have been in the ER for 8 and 6 hours respectively now. Thankfully we always know to have many snacks, juice and water in our bag. Honestly Ollie won't eat the hospital food there anyways and they stop delivering dinner at 6:15. 

Our boy was feeling better today and even managed a couple of little grins while being a bit of his old sarcastic self. He had his optomology exam today and Mario took him. He was very stressed because he can't see as they want to pome around near his eyes. Imagine someone coming at you when you can't see it. The anxiety of anticipation is all too much sometimes. 

The good news is the MRI Sunday and optomology exam and photos today showed that the optic nerve is less inflamed than it was three weeks ago when he relapsed. Optomology wants to see him again Monday to see if it continues to improve. Either way, this is an indication that the Ceretinib is working. The moor puzzling news is that the MRI also showed that there are a few little spots of something appearing on his leptomeninges (covers the brain) which may be nothing, but given they didn't appear on previous MRIs is concerning. The doctor did say it would be unusual to see it working in the brain and causing his optic nerve to calm down and also see new spots as generally if it's working, it's working everywhere. 

Tonight he spiked another minor fever after being fine all day. The oncologist on call felt given it was low grade again, we should stay home unless a new symptom occurred or the fever wouldn't go down or got worse, even with Tylenol. She consulted Dr. Alexander about his LP tomorrow and they still want to try if he isn't feverish. So tomorrow if he's okay in the morning we go and if he's still feverish we may still have to go, but potentially to be admitted and wouldn't have the LP. The LP should definitively tell us if the cancer cells are less or more and therefore whether the new drug is working or not. 

So I don't know what the fever is trying to tell us, but I feel like maybe the COVID case on the very ward where we were supposed to be, after having killed his immune system to allow his sister's stem cells to graft is the reason we're not there. It likely sounds crazy to be grateful for a relapse in his brain that saved him from COVID, but I can't imagine why else we are here instead of there right now. I try not to read into absurd things, but nor do I want to be that silly guy in the meme who keeps refusing to accept help because he's waiting for God to save him, never realizing God sent him multiple people to help save him along the way. 

On a positive note, the other CHEO family that is there in the Bone Marrow Transplant Unit confirmed that they were all tested and are negative and that their little O has grafted, so he's doing okay. Great and relieving news.

So send us your prayers, positivity, karma, light, vibes, whatever you got tomorrow for good news. Both on the fever front and the kicking lymphoma out front. Neither COVID nor lymphoma are taking my boy!

Literal Isolation

He's still at CHEO being a superhero infection fighter. No fever since this morning, although headache and nausea off and on.

We're now literally not just feeling isolated, but are actually in isolation, so no visitors or leaving the room for him until he's well. Naturally this time he brought Beyblades and hoped to make a new friend here to play with. 

Mario took the day off and let Abby sleep in (who indignantly protested when she woke up that she could NOT miss school...She's totally my daughter), then took her to school late and came to be with us for the rest of the day. Ollie slept a lot today.

Llama Llama Blue Pajamas slept today, too.

Dear friends had Abby after school, fed her dinner and took her out to Kanata for a special youth group activity and later brought her back. 

Ollie took the painful and expensive, yet magical G-CSF injection again tonight to try to boost his neutrophils, so here's hoping it works like last time. 

We're tired, but doing okay. We're in limbo about when we'll go home and even if there'll be chemo this week or if it will be delayed, as it all depends on his blood counts between now and Monday. 

Off to bed for me now. Your prayers and encouragement have been helpful today. Sweet dreams to all.

Stronger together

Sunday we were still at CHEO waiting for neutrophils to go up so this superhero has his infection fighting superpower again. It was a long day that started with his disappointment at not being able to go home. The doctor  offered him a day pass or even just to go outside for a walk. He responded, "What's the point?! I'll only have to come back here and it'll be worse!" My sentiments exactly. Sometimes it's best to just power through.

Late that afternoon he asked to have the special G-CSF injection that could stimulate his neutrophils. He said if it would make it more likely for him to go home for sure on Monday he wanted it. Apparently it is very expensive (so grateful again that we are Canadian!), so they warned him that he couldn't waffle on it as it had a short shelf life and the doctor wouldn't order it twice. He committed and was scared, but did it with minimal crying. 

The beautiful thing is that it worked! Monday morning his neutrophils were up to 1.2 from a scary 0.2 (no wonder he got an infection!!!). The nurse shared the news and Ollie was so excited he was dancing. Then she said it might take a while to get our discharge orders. When Ollie asked how long and she said sometime in the afternoon after rounds, he was mad again!   I am not kidding when I say that CHEO nurses are angels as about 30 minutes after she left, she returned and told me if I didn't have any questions for the doctors, they'd already signed the discharge orders and she'd unplug Ollie from his IV and we could go. Again there was dancing and profound thanking. While I packed up, Ollie enjoyed some Christmas carols compliments of a quartet that came by to play for 4 North. 

By 10:30 am we were on our way home for Christmas! 

More packages and goodies awaited us from friends and family! 

 Lego withdrawal was hard!

 Big Hershey's Kiss!

There were also messages and little things to make him happy from every class in his amazing school! 

This evening, my colleague and friend, Jennifer stopped by for a little visit to bring us incredibly generous Christmas presents from my work team. I have always loved working with this team at the Treasury Board of Canada Secretariat because they are not only colleagues, but friends after 9 years of working with them. They are among the kindest people I have ever worked with and honestly the big reason I have stayed there longer than I have ever worked anywhere before. The kids were thrilled with their gifts and we were all wowed by their generosity and thoughtfulness.

Ollie was so thrilled with one of his gifts that he got started on it right away!

 Abby can't wait to wear her cosy new clothes and pjs!

Finally, Ollie wanted to shave his head because the hair loss was too itchy, so Uncle Vic and Daddy followed through on their promise to shave their heads too. We had lots of laughs, and three handsome guys in the end. 

Thanks to all of these beautiful and thoughtful gestures, Ollie feels strong and like you're all in this with him, even when it's hard. We have, however, reminded him that while he has been spoiled lately by so many, this does not make him the centre of the universe and that he should be grateful, but not expect more as people have already been overly generous and it can't be Christmas every day for his 6-8 months of treatment.