Catherine-Ann / Pure-Grace

Dec. 18, 2021

UPDATE ON GRACIE

Friday, Dec. 17, 2021 9:13 PM Although she has no idea, Gracie gives me strength for my own journey.

For those of you who are following little Gracie's journey through leukemia, wishing her well and praying for her, thank you for being part of the 'village' it takes to raise this child. This came today:

Update on Grace:

Proud Dad moment coming!

We’ve been working really hard with Grace to get her more comfortable taking medicine and shots. Initially she was fine with all of it, but after her stroke when we started injecting her with her blood thinners twice per day at home, things changed for the worse.

Recently she rated her shots in order of pain for us. She says that having her IV port accessed at the hospital is least painful, getting an arm poke for blood work is medium painful, and getting shots at home are the most painful.

We inject into the fat below the skin (like an insulin shot) and we know that the medication burns under her skin for 30 minutes or longer each time. No wonder then, that she started resisting and then rejecting ALL her medical interventions, even her oral meds.

It’s been challenging to manage, though. Grace would wriggle to get out of our arms as soon as she knew it was time for a shot, and it broke my heart every time we had to hold her down and inject into her arm or leg while she wailed away.

We keep making sure she understands the “why” behind each thing we have to do to her body. We ask her to consent each time. I’m not sure how much that matters at this age but I don’t want her to remember us giving her shots as a trauma that lives on with her.

In the past few days though, I think we’ve hit a real turning point. For her evening shot, she knew it was coming and she just gritted her teeth and let it happen, knowing it would hurt. Then she relaxed and was fine - no tears, no fussing. Since then, we haven’t had any problems giving her any of her meds. It’s like at some point, she just made up her mind that she is going to do these things even if they hurt.

I am so proud of her. I just see her growth through this whole ordeal and how she is developing so much resilience and inner strength at such a young age. Now that she’s accepting the pain and overcoming it, she’s just going to keep getting stronger and stronger with each moment of adversity.