Wednesday, June 29, 2011

Jaylie's Story

A friend of mine sent me the blog of a little 5 year old named Jaylie. I read a lot of the entries and it moved me to tears right away. Continue reading and you'll see why:

 Jaylie's Story: 

"Our beautiful little girl Jaylie (5years old) was having some vision problems and what we thought would be a quick trip to the opthamologist and possibly getting glasses, turned into a visit at the ER learning she had a brain tumor. Jaylie had brain surgery to remove the large tumor on April 28th 2011. She was diagnosed on May 3rd with Supratentorial Premitive Neuroectodermal Tumor or sPNET. It is a rare and aggressive form of cancer. We thank you for all your prayers, support, and love in this challenging time of our lives.

Written Monday May 2, 2011: 

Jaylie did well last night and slept well except having to go to the bathroom a couple times. She can't move very well so we have to help her out of bed and stuff. She has eaten pretty well today but we have to encourage her and she doesn't eat near what she used to, but shell get there. Her sodium levels are still being kept up by iv and they started having her take sodium tablets. She can't swallow pills yet so we have to crush them up and mix them with orange juice. I put a couple sugar packets in it because it is horrible and the salted thing you've ever tasted. She has to do 3 tablets 4 times a day, so it's a struggle getting hr to do it. Plus she's on a bunch of other meds but she has been a trooper taking them. We will stay in ICU until her sodium gets regulated on it's own. Her surgeon dr. Lee came and talked with us today and said within the next 24 hours it should be doing it on it's own. He said we still don't have the pathology reports back yet, maybe tomorrow. The oncologist is probably going to talk with us today and meet us. Therapists have been coming to work with her, physical and occupational. She pretty much hates them mainly I think because she is frustrated with herself because she can't do everything on her own. It’s going to be hard and sad for us but she will get there. Her left side isn't working quite as well as her right but were working on it. I started balling during therapy today because she was freaking out and not wanting to do it and just wasn't being herself and was being to the therapists. It was so hard to see her like that and sad that she even Has to go through this. I usually am pretty strong especially around her. Its just so hard.

She is only on Tylenol for the pain so that's awesome. They draw her blood every 4 hours and she hates that. She has an iv in each arm. Poor girl though, she's had a bunch of iv's and they work for a while but then give out so they have to do it in another place. It's so hard seeing your kid go through this.

Jaylie has laughed some today and has said some cute stuff. She is acting more like herself everyday. I'm so proud of her. We have a ways to go but I know she will get there.

I'm laying by her in her bed right now and she's playing games on Dads phone with her left hand which is great because she doesn't use that one as well as her right. She has been giving us the cutest little kisses the last couple days and it makes Kip and I so happy. This is the hardest thing I've ever gone through but I know I am being helped by my Heavenly Father and I am so thankful for all your prayers for us and Jaylie.

Written Wednesday May 4th 2011: 
We found out yesterday late afternoon that Jaylie has an aggressive form of cancer called PNET, or supratentorial primitive neuroectodermal tumor. It was a very hard day to say the least. She will undergo radiation along with chemotherapy for 6 weeks and then just chemo for around 6-9 months. We are thankful for the prayers and all the cards, gifts, and food on our behalf and Jaylie's. She is recovering pretty well now, still waiting on her sodium levels but they get better everyday. We ate hoping to be home by Saturday or Sunday but are not sure yet. This is going to be a long road and a scary one for her and us. We are trying our best to stay strong and be happy for Jaylie's sake. She is a strong, determined, stubborn, competitive girl and all these qualities will help her through this. I know Heavenly Father sent her to earth with her personality for this reason. And I know that there is purpose in everything and that we are being strengthened and comforted. And I know my Savior knows my pain. This just sucks- bad.

To read updates about Jaylie follow her blog here: 

What can I do to Help? 

Jaylie's family answer is: 

"Everyone wants to help but a lot of times people don't know what to do! This is why we have created Jaylie's online community with Here you can find out exactly what the Nielson Family's needs are.

If you would like to be a part of Jaylie's online community please send me an email
If you are not near by or have been inspired by Jaylie's story don't forget that you can still help! You can donate to Jaylie's Cancer Recovery Fund or participate in our fundraiser’s. Your proceeds will go towards Jaylie's medical bills."

Click here to DONATE or to leave little Jaylie a message. 


  1. Thank you so much for sharing Jaylie's story Heather! It's so humbling and amazing all at the same time to see people help out have spread the word about her experience. We really appreciate it! Thank you again!
    Robin Ferguson (Jaylie's Aunt)

  2. This is sooooooo awesome!!! Thank you soooo much for taking the time to do this! It really means a lot to our family!! You are just so sweet to help us spread the word!
    Scott and Kori Ferguson
    Jaylie's Uncle and Aunt