Picking up the pieces and moving forward

March 17, 2024

Picking up the pieces and moving forward

It's today!! 17 March - 6 month post-transplant mark!! Nothing particularly magical happens on this day, but it's just that she Emma has now been off immunosuppression medication for 3 months, meaning her new immune system should be able to handle basic challenges (viruses etc...). She may get hit harder and take longer to recover from common illnesses and she is still very vulnerable as she (ie. the new immune system) does not have any routine immunizations yet (she will start to get reimmunized at the 1 year post-transplant mark).

Emma is energetic (relatively speaking, compared with where she has been over the last year), walking Alex to school every day and working on a hobby horse track in the yard. Otherwise, creating complex and architecturally intricate houses and villages in Minecraft while binge watching shows (things like Anne with an E - angsty and beautiful; now on to our second time watching Young Sheldon and Big Bang Theory). She is also coming along with the in-home tutoring and generally (most importantly) feeling good. She sees her primary oncologist every two weeks to have bloodwork and check over - that has been going well with not much to report (in the best possible way). So, at that 6-month mark, she is allowed to go back to school and play more freely with other kids. That is a huge thing for Emma as she is (obviously) desperate for socialization after a year spent either feeling like garbage or not allowed to play due to her depressed immune system. She has been playing outside with neighbourhood kids recently, but it's been winter in Ontario, so it hasn't been very comfortable to be outside for long periods of time (even though we've had a generally mild winter).

Alex is coming along as well - this has been really tough on him, having Emma and I basically disappear (when we were in Toronto) and I'm sure he was worried about what was happening, even when we talked to him about how things were going. He has remained focused at school and received an excellent report card the other week and is doing well at soccer. His soccer team, for both Alex and Chris have been integral in keeping them both steady and consistent. Since Emma and I got home, he has really wanted to stay pretty close to home and has very appropriate (though heart-wrenching) questions and emotions about what has happened. It sometimes feels almost normal, but on a slant. A new, slanted normal.

I am blown away by Emma - she has withstood so much more than any 11 year old ever should have to. She has been poked; prodded; filled with toxic (though life-saving) chemotherapy chemicals that have the potential for causing acute and terrible side effects; had tubes shoved and poked in her; and has been knocked down emotionally countless times over this past year. She has coped as best she can and when she feels good - she gets back to the business of being a kid - playing and creating; laughing and imagining. We are SO grateful for where we are now - a year ago (she was diagnosed 11 March 2023) we were in a different and very dark, suffocating and terrifying place, facing an unknown course of treatment. I have watched Emma and been by her side throughout. What I realize now has been the most distressing part (of course) is the very real threat of losing her. At times I felt as though I was watching her actively moving away from life. As anyone who knows her - terrifying. As her mother - indescribable. There are no words for the sheer terror and desperation I have felt. It will take a long time for me to unpack that. For now, I will try my best to stick with gratitude, although it would be dishonest or untruthful of me not to mention the sadness, anger and absolute exhaustion I have felt when I look at what we have all been through and the far-reaching effects it will have on each of us, both individually and as a collective family.

I can truly understand why the butterfly is a symbol for cancer - every single one of us has been transformed by this. Torn apart, torn down and now, hoping beyond hope, that we are emerging from this experience, each of us in a new form. 🦋

I know there will still be hurdles, but it does feel as if we are entering a new phase of how things will be - in part due to the time of year, with spring bringing feelings of rebirth and new life, but also being a year later and feeling like we are starting to look at the pieces of our lives that were shattered and trying to figure out how to put them back into a semblance of normal. I'll leave it at that so I can post this - I could go on and on and on about how thankful we are for the support we feel - from our families and our friends both near and far. It can be a lonely place, being a parent to a kid with cancer, but I have never felt alone thanks to our amazing support network. 💕