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Immunotherapy - September 24, 2022

I figure if I’m going to be awake in the wee hours - I might as well make some good use of it and update Autumn’s supporters!

We are in our (most likely) last round of chemo/immunotherapy. It is 5 days of the same treatment with 2 weeks off in between. Each round of this seems to get more tricky- if they get the pain under control then she has nausea, if nausea gets under control, then her blood pressure drops, and then needing oxygen etc etc. Autumn also has a cold right now which is enhanced by this treatment but has she complained at all? Not once. (Except when I told her she couldn’t throw her gummy fish on the floor to ‘go swimming’.)

Today will be her last day of this therapy and with any luck we’ll be home Monday! One wonderful thing about this treatment is that as soon as the medication stops running - she is back to normal very quickly and with a normal immune system! We don’t have to spend the 2 weeks at home worried about sanitizing and germs lurking at the park.

Jody and I noticed that within the last couple of weeks, she has a bump on her sternum that has grown significantly. We knew there was cancer there from the outset but to see how much this has grown is shocking. Our team at Sick Kids had a CT scan and the results within a couple days. They found that this course of chemo/immuno has decreased the cancer in many areas of her body but this one spot has grown significantly. We have a meeting with the radiation team on Thursday afternoon and with that, we hope a few sessions of that will zap that evil lump. From there, we have a few options but it’ll remain a mystery until they can get this part controlled.

“Take it day by day, minute by minute” is a term I’ve been hearing since February and the first few months that felt impossible. And with constantly thinking ahead to the next steps and where we’ll be in a year and how everything will go perfectly well and smooth - with that came a lot of turmoil and crushing disappointment and frequent major breakdowns that would leave me depleted for days. This cancer BS is so fluid and ever-changing. There is no way you can think of the future and of 2 steps ahead of now and come out intact. Not every minute or day is easy but appreciating the good things about this minute, this day is what is helping me persevere right now.

Every minute with this child is a good one (even if she’s yelling at me to leave her alone!) and even though we’re in hospitals a lot - she accepts this as her new normal and is still Autumn wherever we are. She’s a happy, sassy 5-year-old who lives life on her own terms and we’re just here living in her world.

We did a craft today with some hospital supplies (Fun Fact: nose oxygen tubes can double as a straw if you put the other end in a cup of Sprite!). She also made a potion with many magical ingredients found around the room. On days she is up for it, we now have a lovely French teacher come in to work with her. She never wants to start but after a few minutes, she’s enjoying herself and she seems to be understanding quite a bit!

It’s not always easy, but keeping as normal as possible makes it easier and healthier for all of us. So we will continue to spoil this little princess more than a normal parent might but we still keep her in check and make life as regular as we can for her.

We love all the support we’re still getting after these last 7 months. Even if I don’t answer a message or call for days (weeks… never sometimes sorry!) - I see them and I appreciate every word!

Jess Gauthier-White has been a phenomenal support and spent many hours planning and solely taking care of the WestJet raffle this summer and we are so grateful. She even makes sure I get out of the house and go out with the girls once in a while (BLESS YOU!)

Another Jess that has been such a great friend and ear for me is Jessica Hill - through our awful similar circumstances I have been given such a wonderful friend for our family. Her and her whole family are such fantastic friends to us and I’m enjoying every minute of getting to know their daughter Addison through memories and funny videos and Autumn rummaging through alll her toys when Jess babysits for us ! Team Addy is a wonderful cause to check out to raise funding for sarcoma research.

Signing-off finally! Autumn is still sleeping in the bed beside me and I think I’ll try and join her before the day ahead begins!

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