Long overdue update
Hi all,
It's been a long time since last blog and a lot has happened. The blow-by-blow of the transplant process has been chronicled on the private Facebook group, but broadly speaking, it went very smoothly. Looking back on it, I would say the hardest part was the total body irradiation (TBI) that Emma had to undergo. And then the vomiting and mouth sores that happened in the low part of the acute transplant process - when the effects of the Conditioning regimen (TBI, high dose chemo and IV immunosuppression) had wiped Emma's immune system into oblivion and before the donor cells had taken place/engrafted.
She engrafted quite quickly, all things considered, and was discharged from Sick Kids 15 days after the transplant, which was on 4 Oct. Since that time, Emma and I have been living at Ronald McDonald House (RMH) a few blocks away from SickKids Hospital. The biggest thing now is staying away from germs/viruses (thus staying mostly isolated) and hoping that no severe graft-versus-host disease (GVHD) crops up (Emma is on an oral immunosuppressant to reduce the risk of severe GVHD, but of course it can still occur). At first, we were to Clinic at SK twice a week and just last week got the 'okay' to go down to once a week visits, which is great.
So for the most part, it's me and Emma sitting in the RMH apartment together, me nagging her to eat and drink enough and her trying to keep busy. She is, quite honestly, very good at keeping herself busy (crafts, Lego, computer games, movies, YouTube/SnapChat etc....), but even she is starting to get bored of the 'same old, same old'. I try to look at it as a good thing - you have to feel generally okay in order to feel bored, but it comes with different challenges for sure.
She has been going to an RMH tutor 3-4 times a week for 40 minute sessions, which she reluctantly attends. The reality is that she has not done any formal schooling since her abrupt departure from school in March 2023 when she first was diagnosed with leukemia. That was mid-year of Grade 5 for her. And she won't be going back to in-person schooling until 6 months post-transplant (March 2024) at the very earliest. So we'll have to try and get her caught up, without putting too much pressure on as she doesn't have much reserve in terms of ability to cope when she feels overwhelmed. I imagine that this type of trauma does that to a child. I feel similarly - not super able to cope with much aside from getting through the days and praying that nothing nasty happens in these early post-transplant days. The goal is to get to Day +100 (end of Dec)... and then to Day +150.... and then and then and then..... so basically, just get through the days until at some point maybe we can look back and say that this was a raging success and Emma is off and able to run and play and go to school and go trick or treating and be a relatively normal kid again... fill up on all the thousands of things she is currently missing out on....but I get ahead of myself.
So I go back to what is right in front of me. Right now, things are going well. Emma is doing great, her blood counts are coming up and all is going in the right direction (knocking on wood as I type that).
Chris and Alex are holding the fort in London. Chris has been doing an AMAZING job juggling all.the.things. First and foremost, Alex's social/emotional world, then the household replete with animals as well as his own work, which is becoming busier and busier... it is a lot. And he is doing great, despite it being very challenging. Chris and Alex have come up to visit twice, having to be very careful and mindful of doing this when Alex (and Chris) feeling well and no cough or tickly throat (what 8 year old this time of year doesn't have a chronic cough or constant cycling of cold/viruses??). We have visited mostly outside and masked of course, but it has been SO good and important for us to see each other.
Mom has been here in Toronto the whole time, having rented an apartment close to Sick Kids. Absolutely vital to have her here and I honestly don't know how I could do this without her support. Similarly, Nate has been coming to Toronto every other week, re-arranging his work schedule to virtual for the week(s) that he is here. No small feat and his physical and nutritional support have been wonderfully nourishing. Dad came up for a week as well and was so good to see him and have him come and contribute to clinic visits as well as discuss all the medical things.
I think that's the broad overview of what's been happening. I could digress into telling you how awful it is to see her have to do and have done to her things that no child should have to endure; to lose all her hair again; to have to miss out on SO much that healthy children take for granted; to see her be disappointed again and again by what she is missing out on.... but I won't. I could also project into the future - what long term side effects will affect Emma? - what kind of physical and emotional scars will she be left with? .... but I stop myself. Those are the thoughts that aren't helpful to what we need right now, which is to try and stay positive and get through the days as best we can.
That's where YOU come in - if you're reading this, send us a message - an email, a text, a funny meme. We got nothing but time! As well, check out Emma's YouTube channel - (144) ~{Wild Doe}~ - YouTube - give her video edits a 'like' and even subscribe to her channel if you're so inclined - she gets a kick out of seeing more and more ppl subscribe (she is now at 30-ish). And send up a prayer and positive thought for us still, as we plod along. Much love 💗
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