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. 

Monday, June 27, 2011

A Survivor

Remember my friend Michelle and the tragic loss of her baby boy James when he was only 2 years old? Well, she recently blogged about James.... I read it and it moved me to tears. I got her permission to copy/paste her post to share with all of you. Here it is: 

I've always been a cup-half-full kind of gal. . . 
That was until James died. . . 
and then. . .
I became something I didn't ever think. . . 
A cup-half-empty kind of gal. . . 
I viewed the world in two very extreme pairs of glasses. . . 
I've lived on both sides of the fence.
I prefer the cup-half-full kind of life. 
I could be a victim. . . 
I could be a survivor. . . 
I could be an optimist
I could be a pessimist. . .
I could be happy
I could be miserable. . . 
I could live 
 I could just merely exist. . . 
5 years later. . . 
I choose to be an optimistic happy living survivor. 
One who sees that cup half full again. 

Seven years ago today, right at this moment, I held in my arms, my 7 hour old, 
***Sweet Baby James*** 
for the first time.
He was perfect-from head to toe.
His spirit was bigger than his body;
You could tell it straight away.
His eyes were permanently propped open.
No sleepy stage for this little guy;
he had too much to see in too little of time. 
He held his head up in the hospital 
and was pushing himself up with his arms when he was just days old.
He was happiest when he was standing straight up at  the ripe old age of 3 weeks.
James was colicky 
that was hard. . . really really hard
It forced us to walk around with him every night from 6:00-10:00 pm
and it had to be outside. 
At the time I thought it was so frustrating.
I see it as the tender mercy that it was-
extra time spent holding my baby 
that I would only have for 21 months and 24 days. 
I'm always amazed how much I could love him so much in such a short amount of time. 
He was curious and active.

He walked at 9 months. . .
climbed at 11 month. . . 
ran at 12 months. . 
He ran-and ran-and ran-
and then ran some more. 
He kept me on my toes. 
He squeeled. 
He laughed.
He loved. 
He was and still is the love and joy of my life. 

I competed in my first triathlon yesterday in memory of my sweet baby James.
It was Sprint distance-
(800 meter swim, 12 mile bike, 3 mile run)
but it was the most challenging race I've competed in. 
I trained a lot
-or so I thought-

I was pretty diligent in making it to the gym 4-6 times a week.
I ran, cycled or swam everyday.
But the majority of my training was done inside and on flat surfaces.  
It was a whole different story on the course-because the course was not flat. 

On race day-
the water was 55 degrees. 
Nerves were getting the best of me and fear set in.
It was new; it was unfamiliar territory. 
It was a path I had never trod. And I was doing it alone.  
So familiar to my grief-unfamiliar and scary, with only myself and God to get through it.
The fast swimmers took off.
I was in the back of the pack with the novice swimmers.
I swam and swam and couldn't get to the buoy. 
It seemed to be getting further away. 
Once I got to the first buoy 
the coast guard announced over the megaphone, 
"Use US as the buoy. The buoy has been dislodged and has drifted."
the coast guard boat was about 150-200 meters closer than the buoy-where I was at.
So I swam to the second bouy. . . 
and yet again. . . 
it happened. . . 
once I was to the second buoy the coast guard boat announced,
"We ARE your buoy. The buoy has drifted."
(They were about 200 meters closer to shore). 
We will just say I was in the water for a VERY Long time.
I have never been so frightened in my life to be honest
 to be out in a lake
with only my own inner strength to rely on.
There were times I really didn't want to keep on keepin on . . . 
but I had no choice. . . 
I certainly wasn't going to give up
nor was I about to sink and drown.
I made it back to shore and ran barefoot up the 300 foot dirt road to my bike. 
The first 7 miles were uphill. Literally. 
There was a beautiful 50 yard, 45 degree hill about 2 miles into the ride. 
I hadn't trained for hills...Remember?
I took a deep breath at the bottom of that hill and 
'put my shoulder to the wheel'
The last 5 miles on the bike there was a mean crosswind. 
I could do this.
I've done harder.
I've lost a son.
Certainly, I can do this. 
Because I'm a survivor.
I'm a fighter.
I'm capable. 
I'm strong-
As I rode on the bike, I sang to my baby happy birthday. 
and then I sang my song for him...
"You are my sunshine, my sweetest sunshine. You make me happy when skies are grey. You'll never know James how much I love you, please don't take my sunshine away."
Tears filled my eyes as I momentarily wallowed in self-pity that my sunshine had been taken away.
And then I realized,  as I felt the warmth of the sun beat down upon me that he wasn't taken away,
he just shines from a different sphere.
He's not physically present, but he is spiritually present. 
He is there for me-pushing me, encouraging me, loving me,
*I just can't see him*
But I certainly could feel him.
I started running the last leg of the race and my calves were like lead. 
The run was almost all trail. Something I hadn't done at all in training. 
Also all hills. 
The course was beautiful.
BUT it was hard. 
I rounded the corner and saw my kids and my parents and sister with her children.
They yelled out for me
 I smiled as I passed
And I was so grateful for family support.

*It meant the world to me to have them there. That's what family is for.*
 and I sprinted into the finish line. 

You know me and how I parallel everything to my grief....
Before James died, I thought I was 'spiritually trained'. 
But I didn't realize I had only done flat course 'spiritual training' (the easy stuff). 
and how much more challenging the actual 'course' (grief, death, trials,adversity) would be. 

We are not often not as prepared as we ought to be (and think we are) to face the long swims that leave us vulnerable to either sink or swim, the challenges, hurdles, cross winds and hills 
we face in life that are unanticipated. 
We sometimes slack in our 'spiritual' training like scripture study and family home evening and prayer. Often we slack on a grander scale in our 'hill spiritual training' the training that is harder, that stretches our limits and capacities, that we have to put forth real effort to accomplish. Things like service, unconditional love, making God and Christ our best friend through remembrance, surrendering the weaknesses that only God and ourselves know we have, forgiveness, and striving to be more Christlike everyday. 
Trials can seem scary if we haven't laid the ground work and foundation and endurance
 real, solid, spiritual training.
But if you have put in the time training-
"If ye are prepared, ye shall not fear."


You can read Michelle's Blog HERE.