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.

Chicken Soup for the Soul

Today was a good day. Ollie still slept a lot, but he had only one headache early this morning and no other real pain (only a bit of discomfort from lying in bed for 15 days and annoyance at the feeding tube still being there). He ate some soup and YOP. He's also getting up and urinating and having bowel movements without pain or stress. 

We've cut his pain medication in half and he's doing well. He had short conversations with me and was always lucid. That's a big improvement. 

He desperately wants to see, but is accepting that it may take time until we've won the war against the lymphoma in his head. I've also started talking to him about how you can live a great life even if you can't see. Although we remain hopeful, we have to start normalizing the idea that he'll be okay if his vision doesn't come back.

We started his regular round 3 of chemo with a slight change to one of the usual chemo meds since the lymphoma in his cerebrospinal fluid now requires the change. So far so good.

Tomorrow he'll get another lumbar puncture to relieve any pressure and do the inter-thecal chemo again in his spine.

Meanwhile, Abby was at school where there was a special liturgy and prayer circle for Ollie led by our priest. Several teachers and her principal sent me photos and notes to say how moving it was and that Abby had been so strong and brave in speaking at and doing a reading for it. 

Ollie' s sweet teacher told me she'd felt emotional at one point and Abby saw her and went over and gave her the biggest hug. She's a girl with incredible grace and empathy and we are so proud of her.

The prayers are working. He is getting better and stronger. He is starting to believe that he'll get better. So we all feel better and stronger and more hopeful. 

Thanks to all of you for helping to bring us through the darkness of the last two weeks. We're not totally out of the woods, but we're on the path out.

Hail Mary and Learning About Lymphoma

This little dabbing elf is home and doing really well as we rest and wait for round 2.

It has been a quiet and uneventful few days. We had a quick visit to CHEO Friday followed by a dash in to Walmart with Ollie wearing mask and gloves to avoid exposure to viruses. All so he could be a normal kid and choose a few new Beyblades with Christmas money received. This is our new reality. We are unable to take him into highly populated public places where he might get a minor cold or flu bug that for anyone else would be uncomfortable, but for him could land him in a serious illness with isolation in hospital because the chemo is killing his immune system. So many kind friends have offered to bring their little ones over to play and it breaks my heart to have to explain that we can't risk the exposure to kids we all love and miss playing with. Please don't forget about us, because Ollie will be back to play as soon as cancer has been kicked out. To this 

end, his teacher Mrs. Didiomete kindly pointed out to him in a recent online video chat with the class that he is still part of the class and they have kept his desk there to remind them everyday. My eyes are leaking...😭

So for the meantime we are trying to make some new friends at the hospital who are in the same situation and through activities such as Kids Kicking Cancer, a martial arts program for kids with cancer, which Ollie is eager to try this week. 

Abby is dealing pretty well, but has found it tough sometimes to explain to kids that cancer doesn't automatically mean that her brother is dying. The kids are empathetic, very well meaning and truthful about their thoughts, not realizing how tough that might be for her to hear. Fortunately, our Interlink.Nurse from CHEO went into the school today to Abby and Ollie's classes to talk about lymphoma and to allow kids to ask their questions. He explained that Ollie's cancer is highly treatable and he is expected to come back next year and what friends can do to help keep Abby and by extension Ollie safe as he goes through treatments.

It takes me back to Abby's grade 1 class where another St. G family (whom we are grateful to know) had done the same when their son had leukemia and Abby was in his sister's class. It was the first I had heard of their battle and it touched me deeply. This family bravely fought and won their battle with leukemia and have been supportive of us on our journey. I remember asking the mom after they kicked it how you do it when it's your child and she told me you just do because there is no other option and you find strength you never thought you had. She was totally right. They give us hope and understanding at a time when we are often unsure and we are very grateful to them.

I am also learning a lot about Lymphoma. I never imagined I'd be so interested in blood counts, test results and medical procedures. Change forces us to learn new things and grow in ways we never expected. 

Last night Abby's choir sang in an Advent Caroling event that our parish puts on. 

The St. G Performance Choir (including Abby) in the Advent Caroling event at St. G church.

Abby made her debut doing a reading at church. As I sat there watching her read I was so proud of her and then overwhelmed with emotion that she is handling everything with such grace publicly for one so young. She has had her completely justified moments melting down over all of this, but mostly she's just stepped up to be a better sister and daughter over the last weeks. 

All of the readings were about the coming of Jesus at Christmas. Naturally, Mary as his mother features heavily in these stories. I've never felt so drawn to her as I have in recent weeks. Even as a person of faith I marvel that she agreed to bear God's son, knowing full well that He was the savior and would one day be sacrificed to save the world from sin. 

I have prayed to Mary as a mother in these last weeks, asking her to give me strength to bear all of this. One night after Ollie's bone marrow puncture when he was in a lot of pain, Mario (who believes, but is not very religious) even suggested we all.pray the Hail Mary together and she carried us all through the pain. She is sending me her strength in ways I never imagined. I know in my heart that God is good and will save my son with the help of medicine. I have faith that He loves me and understands that as a mother I cannot accept anything other than a full recovery and a beautiful life for him after this. This feels like a test for all of us, but fortunately I've always been an excellent student and aced tests and I'm not about to fail now. 😁 

Mario is stoic as always. He has moments of emotion when friends make overwhelmingly kind and unexpected gestures to help our family. He is the strongest teddy bear around. 

Overall we are all doing pretty well, all things considered. We're resting up and trying to enjoy every moment of being home together to help us get through the next round. Thanks for your continued thoughts and prayers.