A hard week, but Charlotte says it best...

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Well village, we are having a tough time here. The good news is that she is not having any major or life threatening reactions, all is manageable so far. However, last night we did end up with a high fever and needed to come back into hospital for fever protocol. Then, after we got back to RMH late her rash/hives that she began to develop Tuesday had begun to worsen. She has developed itchy hives on her head, neck, face, almost the entirety of her trunk and pelvis, and it’s currently migrating down her legs. She’s also developed an allergy to the dressing that covers her chest port. Team noted that her rash is a pretty rare and substantial reaction to the immunotherapy but that we can manage it and march onward. So, I’m managing as directed but the team here says it is likely to continue to worsen as her immune system is responding to this treatment. Picture your child having a full body drug reaction, you would of course take them to the doctor and stop taking the medication right? The mom in me of course wants to instinctually stop giving her what she is having a strong allergic reaction to. But the MOMCOLOGIST in me knows we don’t have that luxury. We have to keep going😞🌈She needs this treatment to fight what IS a life threatening cancer. So our choices are impossible at times. And frankly, limited. Therefore, the team and I have agreed to proceed and keep managing her immune response with more medications and help treat the side effects but not stop treatment. Charlotte is actually in great spirits besides all the itchies with strong vitals and her fever is currently gone. She’s been her playful happy and silly self today amid it all🤷🏻‍♀️. Now THAT is grace. 

2 days ago, we ventured out to a nearby playground at her request and I heard her singing something while swinging. When I asked her what she was singing she told me it was part of a song from Hamilton that Taylor likes to sing....I asked her to repeat so I could snap a quick video because oh my goodness this child was singing lyrics that she could never imagine speak in ways about her journey! Video clip below but she was singing “ITS A GREAT DAY TO BE ALIVE RIGHT NOW!” at the top of her lungs😂 (The lyrics are actually “look around. how lucky we are to be alive right now”. Later in the song it says, “Look at where you are. Look at where you started. The fact that you're alive is a miracle.”) It IS a wonderful day to be alive baby girl. Even just less then a decade ago, her chances at being here today would have been slim and there was no cure for relapse. We are BLESSED to be alive right NOW. Happy 2020...bring on healing. 

Here’s to praying we can safely manage all these side effects and get some much needed rest tonight. Both of us were up half the night for the last TWO nights, though for some reason I’m wearing down worse then her. And thank you for all your TLC back home too—Meal Train and friends messages of love and support and prayers and gifts and our family that came to help Brian with the kids...I don’t always get back to everyone but I read every single message and man does each one lift me up. I’m weary. I’m reaching. I need a good cry and a good sleep. But damn it we’ll keep going and moving because Charlotte is truly leading the way. And, what other choice is there.
❤️🌈 #charlottestrong
Those cheeks! Getting blood cultures and antibiotics late last night when she had a high fever 

She was so proud of the puzzles she did herself. Thanks for that smile sweet girl


This memory came up in my photos time hop yesterday. It was taken exactly one year ago and another good reminder on a tough day of what we are fighting for. I hope tonight she can rest comfortably and have the sweetest dreams...maybe of laughing while swinging in the sunshine, one of her favorite places to be.

“It’s a good time to be alive right now”

Sometimes the things she says...💕
https://youtu.be/FWV7s5rI8MQ

Comments

  1. ppa1dayatatimeJanuary 13, 2020 at 12:05 PM

    I fell a little behind on keeping with Charlotte! Boy, it sure is great to be alive! As it is Monday now, I am so happy you are looking forward to goign home!

    ReplyDelete

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