Kayleigh’s Road to Remission

04/20/2024

Big things are being put into motion for Kayleigh! Fingers crossed that it won’t be much longer before we’re able to announce it to everyone! If you are one of the very few that may know what her possible wish may be 🤫🤫 nothing is 100% yet until her wish team is able to confirm it…. Plus you guys already know I’m gonna make the announcement extra for my baby girl ❤️ 😁 to be continued soon guys…

11/29/2023

In honor of the last few hours we have left of Giving Tuesday, I wanted to make sure to take a moment to share the organization that is really making a difference for Kayleigh and all other children battling some form of Juvenile Myositis.
There are currently No- FDA approved medications for JM. With each gift that Cure JM receives, they are able to better educate doctors and also increase the number of JM specialists in hopes to shorten diagnosis time for many of the children. Investigate a new type of gene therapy as well as funding research that can lead to new medications for our children with fewer side effects. With the help of friends and families, one day the gift of hope will lead to the gift of a cure!

In this family no one fights alone! Help us reach our goal to raise funds for research for better juvenile myositis treatments, care, and support. Every dollar makes a difference! http://events.curejm.org/goto/hopeforKayleigh.

Hope is in the research!

01/01/2023

09/18/2022

Just an update for anyone who’s not already on my personal page and didn’t get a chance to see!

Kayleigh had some, Stranger Things that happened out of the ordinary today! This little 11 spent the afternoon with some of her very best friends bouncing at The Zone!! After a fun night with her Aunt Mal Mal last night, I made sure this Eddie Munson top fan had a great day with friends! Thankfully, no Demogorgon showed up to mess with this Hell Fire Club!! I don’t think I’ve seen a Stranger Thing all day! 😉😉

Some how time has flown by and I’m thinking, how can she already be 9…. Life can be such a strange and wonderful thing ❤️ I’m truly blessed to have her.

08/19/2022

Hello everyone. Just a bit of a life update for ya! We had another infusion yesterday, and labs come back still looking good. I didn’t get as much information from the NP as I typically do, primarily because of the craziness going on around us in the infusion center and it being extremely crowded. They didn’t seem to have any concerns so we’ll chalk it up to another step in the right direction for Kay.

But in other news! Someone had their first day of 3rd grade on Monday! She’s not exactly happy that school is back in session, but she is excited to be having a science class this year! Also someone has their 9th birthday coming up very very soon. She’s given me no ideas on what she wants from me other then, anything to do with the show Stranger Things lol!

We’re getting very close to the 1 year mark for our journey through JDM…It’s crazy to think it’s already been this long. But without the support from our family and many of you, I couldn’t imagine where we would be. Thank you all for checking up on us, being there for us if ever needed, and keeping Kayleigh in your thoughts and prayers. I’m blessed to have met such amazing people in each and every one of you. 💛 Thank you all again and God Bless.

07/27/2022

Update on Kay’s latest appointment we had last week. Everything overall went well. Had a few hiccups along the way but nothing unbearable. Labs come back looking great!!

We were given a glimmer of hope. We were told that from time to time there are JDM cases that will have the first major flare of active disease. In some cases, they will see the inflammation continue to decrease and muscles heal with the help of medicine and time. It’s not uncommon to have a small flare or two along the way, but In these lucky cases the JDMer will still show progress and likely reach remission and remain there.

They say that Kayleigh is looking more and more like one of those very blessed children. Nothing is for sure as of now since it could all change within seconds if a flare was triggered, by literally anything at any given time.

So we still have a good ways to go until she’s in remission, but finally being able to picture the finish line has helped lift some of the weight that we’ve been trying to carry for some time now.

I’ve been praying more then ever asking for continued strength to flow through kayleigh so she can keep the fight going. And inner peace for myself, because my hair is thin enough and this stress isn’t gonna help me keep a full head of hair. 😂

Thanks everyone for stopping by!