#FightlikeRylie (The Nicholls family)

update -

**even though we are months away - we would like a rough number of guests that would want to attend this event. Please DM me or text me or Matt Nicholls **

Tentatively, we are scheduling Rylie’s Celebration of Life, May 11th, 2024 in Lake Country BC.

We don’t have any specific details other than that - but hope this information helps those that may travel for it.

Thank you and much love from Matt, Cameron and myself.

#fightlikerylie

**UPDATE** (Oct 24, 2023) from Toni (Rylies mom)

Unfortunately, we have received possibly the worst possible results from her lung CT.

In July, Rylie’s lungs had a little bit of fibrosis, but also had a lot of inflammation. Now, there is hardly any inflammation - but lots of fibrosis.

Fibrotic lung tissue isn’t something that is treatable easily. She’s been on anti-fibrotic for 3 months, but the disease has progressed a fair bit.

She currently doesn’t qualify for a lung transplant because she’s only a year out of cancer treatment, and the rules are that she needs to be out for 2. Our team will still exhaust every option on trying to get an exception for her.

She’s needing substantial oxygen support right now. And she won’t be able to out off the BiPap any longer as she can’t maintain 10+L of oxygen 24 hours a day.

And the fact that she almost crashed during the sedation - means the teams have to discuss with us resuscitation rules for her. She was palliative. But now there isn’t really any further treatment plans for her. Slight adjustment to meds. Hoping to get to the 2 year mark to see if she can even qualify for transplant. But most likely she won’t.

I don’t know if this means we will be able to return home again. Without supports at home yet, it’s scary to monitor her 24/7. So over the next few days we will decide where we go from here.

This girl beat cancer. But the treatments to save her, are going to take her away from us.

#fightlikerylie

Hey there, some of you may know me as Savanna’s mom; my name is Krista and I am helping raise funds for the Nichols as Rylie continues her battle!

The unfortunate part about cancer, (especially childhood cancer) the treatment is decades old treatment and the side effects are sometimes worse than the cancer.

This week she had a biopsy of her lungs, the lung tissue definitely has something not right but they are still awaiting a diagnosis. This means it will be longer than anticipated for Toni to be able to work again as she focuses on her precious daughters health, as well of her own mental health as she faces the next set of challenges they are facing.