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Liv's Blog

Liv's Blog

Liv's blog is a compilation of posts from the GoFundMe site, created initially by Jess Cope - a long time friend and collaborator with Lasse Hoile during their work on projects for composer and musician, Steven Wilson. Many of the posts will contain moving contributions from Lasse, Vitalia and their colleagues including video clips and photography of Liv's brave progess through her treatments and life at home with her parents. We hope you will learn from their experiences and help to spread and gather support for Liv and other children in similar situations.

Bit of week, but a little ride into something new.
Bit of week, but a little ride into something new.

Bit of week, but a little ride into something new.

Lasse Hoile

This past week has been a bit of a tough one.

The final stages of Liv’s new therapy space are taking shape - and while we’re so close to the finish line, it’s also taken a lot out of us. On top of everything else, we’ve had to remove our old bathtub to make space for a roll-in bath, so we can safely and comfortably bathe Liv without risking our backs. Until it’s installed, we’re using a mobile shower/toilet unit out in the garage, and… well, let’s just say it hasn’t made life easier. But we keep reminding ourselves why we’re doing this - and that the end result will be worth it.

Liv has also had her latest round of blood tests. Her phosphate levels were a bit too high, so we’ve started giving her something to help reduce that in her food. She also received her last vaccine and a shot of epo, which means that medically, she’s now ready for a kidney transplant. The only thing holding her back is her weight - it hasn’t been gaining as much as the doctors would like, but we’re hopeful that she’ll reach her goal in time. She’s still having some stomach trouble and hasn’t been sleeping as well as usual. We’re hoping to get an endoscopy soon to finally get some answers - this has been ongoing for years now, and we just want her to feel better.

But in the middle of all this, we had a truly beautiful moment: Liv got to ride a horse for the first time ❤️ It’s something we’ve been hoping to do for a long while - recommended by her physiotherapist to help her balance and cognitive abilities. Though she was tired, she absolutely loved the experience. Being outside, doing something new - it meant the world to us all. And when the weather is nice, we’ve been having little picnics in the garden - something simple that brings Liv a lot of joy. She even had her first taste of pink lemonade recently, and she was so curious and delighted We’re really looking forward to finishing her new therapy room soon, so Liv can begin more extensive training in a space made just for her needs.

We know how much it’s going to help her - and us. Thank you so much - from the very bottom of our hearts - for helping us make this all possible.

Much love from, Liv, Vitalia & Lasse.

A difficult update
A difficult update

A difficult update, but still keeping hope alive for our little Liv

Lasse Hoile

Dear friends and supporters,

This past week brought some hard news. After months of hoping and testing, both Vitalia and I have learned that we are not suitable matches to be kidney donors for our little Liv. Obviously, that was not the news we were hoping to get.

But the search continues. Other close family members are still being tested, and we’re holding on to hope that a match may still be found there. In the meantime, we’re also preparing for the possibility of Liv needing to go on the transplant list. While that option is not worse, it does come with a longer waiting period, a slower start for the new kidney, and a more delicate recovery. But we will do whatever it takes - and we have to be ready.

That’s why Liv’s new therapy space at home is more important than ever. It’s still under construction, running behind schedule (as these things often do), but we’re aiming to have it finished by the end of June. This space will be vital in helping Liv grow stronger and more prepared for the transplant journey ahead.

At home, we continue daily training with her. She’s had a few difficult days lately, likely due to needing her regular EPO dose, which helps her body manage the effects of kidney failure. Her weight has dipped slightly - down to 13.4 kg - and our doctors would ideally like to see her closer to 15 kg before surgery. We’ll be back at the hospital next week to check on her vitals and adjust her care as needed.

Despite everything, Liv continues to shine her light. Every step she takes, every smile, every laugh - it reminds us why we fight so hard. And your continued support gives us the strength and means to keep going, even on the harder days.

From the bottom of our hearts, thank you for walking this road with us.

With love,
Lasse, Vitalia, and Liv ❤️