Consolidation day 35

These are how I count the days currently (see title of post) - according to the chemo protocol. There are 56 days in the current one - Consolidation. Like marking days off with chalk on the wall of a jail cell. Continuing with weekly IV chemo, as well as some daily oral chemo of various combinations.  

But that's pretty doom and gloom and it's not all that. I think we have all settled into some sort of new rhythm, ready to be adjusted at the drop of a hat depending on the mood of the day (dictated by side effects). We can definitely see that once Tuesday evening/Wednesday rolls around and it's been nearly a week since last chemo round - Emma perks up with some energy; some cheekiness; and some engagement. These are the days that I think get us all through the other days - the ones that are so hard and full of aches and pains and anxiety over what could be causing what and why. I feel like I have lost the ability to discern or filter the importance of complaints. Is a headache just a headache or a representation of something bigger? But we have a very responsive team at our fingertips - I can email our Nurse Case Manager with a myriad of questions and she gets back to me promptly. Our experiences in calling in on the weekend to the on-call Paeds-Oncologist have been so positive - very responsive and helpful and that is extremely valuable when you imagine being lost with no-one available to guide you through. Our primary oncologist, Dr. Seelisch, has been amazing as well - available to have longer chats when requested and interacting with Emma in a positive and caring manner. 

Emma has recently been enjoying going to Greenway Park to feed ducks/ducklings and geese/goslings. Those are fun outings, and she even feels up to having a play on the climbers as well - what a strong and determined young lady!! This week on Wednesday was pretty amazing - equine therapy at Circle R with Emma having a very important and special connection to a Lac La Croix horse named Mediiwin (Meh-DEH-oh-win) and a sweet little lamb called Robbie. She gets so much from these visits, you can see her whole body and being filled up with positivity, love and healing. Thank you, Susan and Circle R Ranch 💗. 

The other highlight of this week was that both Wednesday and Thursday evenings Emma has been going swimming at the neighbours pool! It may not be clear for those reading this how huge this is - the treatment thus far (and for most kids in a similar situation) knocks you around and makes you feel tired and yucky and not wanting to do much of anything.... so for her to get in the pool and swim around felt significant in the most positive and uplifting way. Emma you are so strong and determined and we all see your feisty, strong and beautiful core. Keep it up kid (when you feel it)! She also felt good enough to go to school for an hour on Thursday - it was great for her to see the classroom and her classmates and luckily they were doing art, so it was right up her alley!

As always, our people surrounding us with love and support has been amazing. Said neighbours, whose pool Emma was in, have been invaluable - another house for Alex to go play at when the mood in our house is not so fun (often) and allow him to just have fun and be a kid. Emma knows this family so well and choses to go and hang out there in the front or backyard briefly when she feels up to it. The fact that she feels comfortable and safe to venture out is amazing and really a testament to what good friends these people are (THANK you Hammonds!!!). As well, there have been a group of neighbourhood families who gather each week to do a group meditation, sending healing energy to Emma - what a beautiful, thoughtful and powerful way to show support and love. And to my close friend Sonja, who is available to walk or have coffee and lift me up in just the right ways and with just the right words - thank you - I love you and the way you are holding me. 

And of course, to our families - my parents and Nate, available to drop things off, come and hang out and be there to support us in any way that we need. To Lynda, Stephen and the Szajers (Ingrid, Bruno, Jaxson, Ava and Benji) - sending parcels to keep the kids busy and showing love with supportive messages and sending love across the ocean - it is all so meaningful. Thank you 💕

We'll power through these next few weeks of Consolidation - the testing at the end of this phase - lumbar puncture (LP) and bone marrow aspirate (BMA) - will be significant. There are two ways it will go: 

1) Cancer gone - Minimal Residual Disease (MRD) zero (also called MRD negative) - we would then move on to the next phase of treatment, call Interim Maintenace 1 (IM1). With leukemia, remission doesn't mean treatment stops - the protocol is 2.5 years long regardless with the view that the cancer is knocked into remission as soon as possible and does not recur/relapse. 

2) Cancer not completely gone - MRD positive - we would be moving on to a round or two of Blinatumomab (a monoclonal antibody that targets CD19 cancer cells) and preparing for a stem cell transplant, which would take Emma and I to Sick Kids Hospital in Toronto for 2-ish months.....

Please pray and send positive thoughts for MRD negative. We are visualizing this and willing it to be true.