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!

06/22/2022

Well guys today is no where near done for us but a quick update while things are calm.

We got to the hospital to her appointment to find out their system was down and was unable to check in patients. What that means for us, they were unable to show that Kay is present in the infusion center. Because of that, it’s next to impossible to get most medication ordered (ex. her post steroid, her immunoglobulin infusion.) since it doesn’t show her here in the system. So they had to find a work around today.

Labs had to be sent with a written request which takes longer to get them to be processed. Big risk when her blood usually hemolyses faster then others from her meds.
So pretty much our long day become even longer 😩😩

We did see a few members of the rheumatology team twice today and there’s some major changes with her medications and such. I was really able to ask a lot of questions, make sure information I had read was correct, and get some idea of her long term healthcare plan.

I will be giving more details later this evening once I can get some paperwork done along with some food in me. But be prepared, it’s a lot of information between everything that’s changed today.

06/22/2022

Hey all! I know I’ve been pretty horrible with updates! (If you know me well, then it shouldn’t come as too big of a shocker! 😅) But surprise! We’re on our way to her next infusion appointment!
Last we spoke to the rheumatologists we were on a fast track to quicker infusions and less medication.

As far as summer break has been, due to the extremely high UV index for awhile now, and the ridiculous heat, Kayleigh has spent majority of her summer indoors… 😩 boo I know I hate it for her too! (Thanks a lot JDM!) But I’m sure once we make it through a few seasons and are able to know more about how she manages with sun exposure and such, that she will be able to do more outdoors!

I keep having to remind myself here lately that not only is JDM something her and I barely know anything about.. but because this disease wasn’t something she’s had since birth and has grown through. Kayleigh isn’t the same child she’s known how to be, nor am I able to be the same mom I was for the past 8 years. It’s a process that will become better with patience and time. All in all for being thrown one heck of a curveball in this life… I think we’re doing pretty alright, and with time we’ll be doing even better.

So now that I’m done unloading my mind for the time being, I’m gonna share what it looks like when I try to take pictures with the goofiest, most rotten, and cutest little girl I know! If you couldn’t tell, her favorite thing to do is drive me crazy 😂

05/26/2022

Well folks it was a good day… it was a really really good day!! Kayleigh only had a few tears when getting her iv today, after that it was smooth sailing! Her rheumatologist and nurse practitioner come to see us today.
They are so impressed with how good her labs are looking so they gave us the green light and starting tomorrow she will only be taking her steroid EVERY OTHER DAY!! Kayleigh was so happy when they said that to her that my baby started dancing in her chair! This is a huge achievement for her and once again she has amazed me with her determination.

This little girl is celebrating the amazing news by having some fun at her new favorite place for a glow jump. Oh and of course she’s got her partner in crime Aunt Mallory, while I take pictures from the side lines 😂

05/25/2022

This little cutie had a wonderful day at the aquarium yesterday for her friends birthday! Tomorrow we’re off to St.Louis again, but this time it’s for her next infusion at the hospital. All seems to be going well with Kayleigh’s health so we’re praying her labs show us the same thing 🙏 I’ll be able to update everyone after I know more tomorrow 😊