Back to Life!

Well blog world, it has been a couple weeks since my last post and a lot has gone on.  I went on Spring Break with my family to Orlando, Florida; Emma finished her cancer treatment; Abbi had surgery; and EJ has been in and out of the hospital and is currently there again. Also, Jordan went with his family to Orlando, Florida, and CPI Corp. (the photography company I worked for) went out of business.

I am super excited to share all of the pictures with you all from my Disney trip with my family, and to share a post about Emma finishing treatment, and to update this blog on Abbi and EJ's progress, but at the time I am hard at work looking for work! Also, my mom and I are still getting all of the pictures together from Florida, and I want to make sure I have the best of them to share here.

I basically just wanted to update my blog and say that the Spring "Blog-Over" has occurred and I am getting back to life!


Shine Bright!
<3 Stormy

Well, Well, Well

Guess who hasn't blogged in a bit?

Oh, was it that obvious?

ANYWAY, it's that time again already.... BLOG-OVER!

It's Easter time, so I chose Jelly Beans, because to me, Jelly Beans are a true sign of Easter.  This is literally the only time of year I eat Jelly Beans, and they are a big memory for me because my momma would ALWAYS give them to me on Easter morning.


In other news, my trip is now just days away.  I don't leave for Disney for another week and some days, but I go to NC on Saturday!  I am a little sad to leave my Jordan, but I am also ecstatic for a long visit with my family and friends, and of course, DISNEY WORLD! I am the most excited about seeing my sister, Savannah, get excited.  She has been talking about going to "The Disney Channel" since she could talk.

I never got around to uploading my father-in-law's birthday pictures, and honestly probably won't.  If I do, it will be WAY later, but I probably won't considering they are still on my camera.  So in case I never get around to it, let's just say everyone had a good time and his favorite gift was his Sons of Anarchy shirt from Michaila.  Oh, and we ate at Lonestar.



Now it's time for an update on EJ.  He just got to go home today, so he spent his birthday in the hospital.  Jordan and I went up to see him twice this week, once on Thursday night and again on Saturday, his birthday.

Thursday night was rough. Michelle and Ed had gone, understandably, to see the rest of their kids.  Jordan and I sat with EJ for a couple hours, but while we were there the nurses had to wake him up to advance his NG tube and remove his Stem Cell catheter.  Basically, they had to push one tube further up his nose, and pull another from his groin.  The good news is he harvested enough stem cells that he only had to do one day of harvesting, the bad news is the removal of that cath was NOT pretty.  Jordan even had to step out of the room. EJ did a great job holding still, but he screamed and cried and it was absolutely horrifying.  I just stood there and held his hand and I felt so incredibly helpless.  Soon after it was over, he was right back asleep.  More strength than I have ever shown, right in front of me, by a four year old.

On Saturday, we arrived about 12:30 and gave EJ his cake and gifts and we were sitting with him, Michelle, and Ed, when Spider-Man walked in! That's right people, Spider-Man!  He came in with a walkie-talkie and told EJ he had an important call for him.  It was Captain America!  They played with him and gave him some gifts and did balloon art with him and even made him an honorary superhero.  It was so awesome!  You can see the videos on my YouTube channel. Also while we were there, Child Life came in bearing gifts for EJ and sang to him, followed by some of the medical students bringing him a life-sized Spider-Man balloon.

When the superheroes left, EJ dozed off, so us adults ran out for some dinner.  It was a great time of relaxation for us and for Ed and Michelle.  We went to Logan's, and even though the service was nothing outstanding, we had a nice time.  After dinner, Michelle and Ed went back to the hospital and Jordan and I ran to WalMart and then home.  Michelle later posted some pictures of EJ with Superman and Wonder Woman.  His team of heroes definitely came through for him on his special day.  Despite being in the hospital, he had a really good birthday.

The best part of Saturday was EJ was scanned early that morning and the results showed that his body IS responding to chemo! So far, EJ is kicking cancer in the face, just like his big sister, and I have hope and faith that he will continue to do just that.

Here's the little collage I put together of his Spider-Man and Captain America visit:

To get daily updates on our little buddy, you can follow me on Instagram, and follow EJ's journey on Facebook.

Until My Next Post, Shine Bright!,

<3 Stormy

Two Weeks and Four Days

Well, still no picture of my mirror.  I am having technical difficulties with it, I guess.  It keeps falling off the wall.  I have to figure out a different way to hang it up, so hopefully I will have it figured out by the time I switch from St Patty's Day to Easter decor.

Also, EJ is back in the hospital.  He is having a very rough go at it after round two of his chemotherapy.  He will be in the hospital for the rest of the week, so I'm hoping to get up there to see him at least one day this week.  This is his fourth hospital stay since his diagnosis just a little over a month ago.

In lighter, happier news, I have been packed and ready to go to Disney World for weeks now.  The countdown seems to be taking forever! I am most excited to see my sister's reaction.  She has wanted to go for so long, and I am thrilled that she finally gets to go.  Nothing is sweeter to me than seeing a child's dreams come true.  We leave in two weeks and four days, and I am so excited I can hardly stand it!

My in laws are also going, with Michaila's boyfriend's family, and we just found out last night that they might take Morgan, Michaila's BFF, so that will be cool! And we might run into each other there, since we are going during the same week.

I also might run into Lindsay! I might finally get to meet her!  Lindsay and I have been internet friends for around three years now, and it really would be a dream come true to meet her in person at the place where dreams come true.  Her family is arriving in Florida at the same time mine is.

I have also been in cahoots with the Easter Bunny lately, and he has left gifts for Savannah, Michaila, Ashlynn, Aniyah, Tyler, Sawyer, Madison, Mekenzie, James, Kyra, Lacey, Macaden, and Norie right in my bedroom! I can't wait to deliver the gifts to all the wonderful kiddos.  I'm working on a really internet gift for Michelle's babies, since EJ might be in the hospital for Easter and I'll be gone.

A lot of those names are familiar to this blog, but Aniyah is a new name here.  Aniyah is a beautiful 7 month old princess that I have been babysitting.  Her mother and I are close in age and they live right down the street, so I watch baby "Niyah" while Johanna works and goes to school.  I love her!

Speaking of school, I start again pretty soon and I am determined to make it this time! My education is a dream of mine, and I really want to see it come true so that I can pursue other dreams of mine, in the career field.


This post has been all over the place, but I haven't blogged in a little while, so I wanted to just share some things here.



Until my next post, Shine Bright,
<3 Stormy

Long Weekend Heartbreaks

So obviously I never posted a picture of my "Holiday Mirror".  That's probably because I didn't take one.

Today was a little heartbreaking.

Actually, a lot of this weekend has been a lot heartbreaking.

Two of the children I followed the updates of passed away this weekend.

Audrianna Bartol died at the age of 6 Friday evening at 5:45pm.  She fought Neuroblastoma for four years.  I knew about her and read about her progress for about three of those years, and even contributed to helping cross a few things off her bucket list by making a page dedicated to the list on Facebook.

Saturday morning, at 2:40am, Daisy Love Merrick also passed away.  Daisy had battled a Wilms Tumor for also nearly four years, three of which I had been following along with her journey.  Her cancer just kept coming back.  Her parents even took her to Israel to try and save her life and the stupid cancer just would go away.

Now I never got to meet either of these kids face to face, and I don't think you have to have been face to face with a person to know them.  I have had numerous conversations with the parents, including one with Audrianna's mom tonight.

I am just asking that you pray for these two families and the thousands of people who loved them near and far and prayed for their little girls.  And if you knew or knew about Audrianna or Daisy, I am so sorry for your loss, and I am here for you.


Today, EJ had clinic.  Clinic is supposed to be a one day thing.  You go, you get your labs or your one day chemo and  your other one day type of procedures or treatments and you get to go home, no bed required.

Not for EJ.

After being home for less than a week, EJ is now experiencing his second hospital stay thanks to stupid cancer.  His labs came back absolutely terrible today.  ANC was less than 12, Hemoglobin at 6.5, and get this people, his Platelet count? 1.  EJ had ONE platelet today.

So, he was declared neutropenic, and sent right upstairs, right back to room 809, where he spiked a fever.

Great.

Not only were his counts out of whack, he now had a fever.  So they put him on fluids and pain killers (which he had gone the weekend without and was in pretty bad pain", and they took some cultures and last I heard from Michelle he was resting comfortably.

It's bad enough for a kid to have cancer, and to have planned hospital visits, but to have an unplanned visit just makes for a situation double the difficult.

Please pray for my little buddy.   I'm hoping to get up to CHKD to see him and keep Michelle some company tomorrow.  We will be a sight with our germ protecting masks on around neutropenic EJ.




Also, my mother-in-law has Sciatica.   She can barely move since about four days ago.  Michaila and I have been helping her as much as we can and she's slowly getting better, but please add her to your prayer list as well.





I know this post is sad, but it is 100% true.  If we turn our heads from the sad things they will only become more sad.  In the great words of the Lorax, "Unless someone like you cares a whole awful lot, nothing is going to get better, it's not!"  No child should have cancer.  I believe there are cures to be found, and I care a whole awful lot, and I hope you do too.


Do not fret, however, if anyone is actually reading this.  I have some happy times and good news to share as well.  My father-in-law's birthday dinner was this weekend so I have photos of that I will share within the next day or so and I have an exciting trip announcement for my remembering purposes on this blog.


Before I go I just wanted to share this quote I saw on Facebook today:

"The Lord will fight for you, you need only to be still."







Shine Bright,
<3 Stormy

St. Patty's Blog-Over

If you know this blog, than you know that I do "Blog-Overs" by holiday or season.

For those of you that are new to my corner of the world:

Usually, the day after a major holiday, I give my blog a little makeover to start celebrating the next one!

I love holidays and the way that they represent the seasons.  When there's a lengthy period of time between holidays, like New Year's and Valentine's, I'll stick to seasonal themes, but for the most part, I LOVE decorating for holidays.

That being said, my blog has received it's St. Patrick's Day Blog-Over!

My "Holiday Mirror", which this blog will most likely meet tomorrow, is next! ;)



Shine Bright,
<3 Stormy

Happy Valentine's Day

I used to hate this holiday, like. in middle school when I thought I would be forever alone.

The older I got, the more I realized that today is a day of LOVE, any kind of love, not just romance.

I grew to love the fun, girly shapes and colors, and a week after Valentine's Day two years ago, I found my forever Valentine.

Today, our second Valentine's Day together, Jordan made me one of my favorite meals, Penne Alfredo with Chicken, for lunch.  He LOVES to cook, and he does a great job.

He also got me a sweet card and a single rose.  I wrote him a card as well and gave him an adorable little Valentine's owl.  He LOVES owls.

We had an awesome Valentine's Day just enjoying each other at home and being thankful that EJ is finally at home too.

It's the little things in life that count y'all.



Shine Bright,
<3 Stormy

All About EJ

If you are not a new reader here, than you already know that one of my closest friends is 6-year-old Emma Grace Bulich.  Emma is the only girl, surrounded by four brothers, two older, two younger, in her family. There's eleven-year-old Samuel, nine-year-old Mathew, four-year-old EJ, and two-year-old Kaleb. Emma loves to be called Monkey Girl, and has been through more in the past two years and two months than anyone deserves to go through in their entire lifespan.  Again, if you are a reader here, you know that Emma survived Leukemia. Acute Lymphoblastic Leukemia, ALL.  She was diagnosed with this cancer at three years old on Christmas Day 2010, and was having her first Chemotherapy treatment on her fourth birthday, January 3rd 2011.  Now, two years and almost two months later, Emma is thriving.  She is in school, has a head full of hair again, and is, like I said, thriving.  She still has to visit the Cancer and Blood Disorders Center (the clinic) every other week for chemo, IVIG, LP, or labs, but even that is almost done with.  Emma's treatment protocol ends in April.

You may be wondering why I just wrote all about Emma, if this post is titled "All About EJ".  Here it is.  Two years and one month and one week after his big sister, Emma, was diagnosed with cancer, on February 1st 2013, EJ was diagnosed with cancer too.

You read that correctly, my close friend Michelle has TWO children that have been diagnosed with cancer.

Friday, February 1st, I was sitting in the living room with Jordan and my mother-in-law, just talking about life, when I read a Facebook post from Michelle.  She wrote "Please Pray! EJ has a mass on his left side and we are on the way to CHKD!"  To make matters worse, it was also Michelle's birthday, and it was about to be totally ruined by yet another cancer diagnosis for one of her sweet babies.

Being the friend that I am, I called Michelle immediately.  Jordan and I met Michelle and Ed at CHKD ER and sat with them and EJ and Kaleb all night, being there for the diagnosis of a mystery cancer.  Doctors threw around "Wilms Tumor, Neuroblastoma, Lymphoma" but nothing for sure.

EJ had an ultrasound and a CT that night, and was just as happy as can be.  It was 11:30 ish in the night when the ER Doctor said he was sure it was cancer, just not sure what form or how advanced, and EJ was admitted to 8B, the Oncology Unit that Michelle was already far too familiar with.

This photo is from the ER visit, 2/1/2013

I was scheduled to visit my parents in the coming week, so the day after this horrific night, I set out for NC.  Jordan took me to meet my mom halfway, and there I was for the next 8 days, visiting, participating in welcome home cookouts (my parents moved back into their refurbished house), and calling Michelle every day to get the latest on our little superhero, Captain EJ.

The doctors waited out the weekend and EJ had a biopsy and temporary line placement that Monday, 2/4/2013.  The surgery went well, but even after a biopsy our local doctors were baffled and couldn't diagnose EJ's mystery cancer.

His images and biopsy were sent to California.

Finally, one week after his ER visit, on 2/8/2013, EJ was diagnosed with Stage 3 or 4 High Risk Unfavorable Neuroblastoma, and his first round of chemotherapy began.

I came home the following Sunday, 2/10/2013, and Jordan and I went straight to EJ.  Michelle and Ed had gone to make sure the other children had what they needed for school the next day, and we went to their home in Newport News and spent the night so Ed and Michelle could get back to EJ.  The whole time we saw him that night he was asleep, orange chemo dripping into his tiny body.

Our night with the other children went well, and when the big kids got on the bus, Jordan took Kaleb and I to the hospital and he went to work.

Ed and Michelle had to get their van worked on, so they took Kaleb and I sat with EJ at the hospital all day.

He slept and was cranky a lot, but we had some good moments too, like when he walked to the wheelchair to go down for an xray, and when he laughed at himself for dropping his video games, which you can see here.

When Jordan got off that night, he met us at the hospital.  We ordered Pizza Hut, which turned into a fiasco, so we ended up eating Papa John's.  EJ had two bites of yogurt, and two bites of pizza.  Pretty good for a kid who didn't want anything all day.

Finally, on Tuesday, chemo was over.  EJ had successfully completed Round 1.  When Jordan and I visited that day, EJ was much more talkative and playful, and a lot more like himself, although still in pain.  You can see him laughing and playing in this clip and this one.

EJ also wanted McDonald's chicken nuggets Tuesday night, so Michelle and I were on it.  We got a little lost, and her phone wasn't working, but we found our way. You can see EJ enjoying his dinner here.

We also had a lot of fun that night drawing, spelling, and making sticker faces.  You can see EJ spelling his name for his mommy right here and wishing her a Happy Valentine's Day here.

On Wednesday, 2/13/2013, EJ had his first MIBG scan to finish the staging of his cancer, and he had his long term CVL placed.  When he was all done, Jordan and I went back up to the hospital to help Ed and Michelle pack up the room because EJ was finally discharged!  His first hospital stay was 12 nights, 13 days long.  Here you can see EJ getting disconnected from his IV Pole.  Excuse the fact that I am talking to Kaleb during a lot of that video, he was being his busy self, and I was trying to entertain him.  Also, EJ wasn't feeling the whole camera thing on this day, but we wanted to capture his "firsts" in the fight against cancer.

In this video you can see EJ making his walk downstairs, and in this one, his walk to the car.  

He has clinic tomorrow, but then he is off for 3 weeks before Round 2, unless he has a fever.

Here are some photos, in no particular order, from EJ's ER visit and First Hospital Stay:

And finally, EJ at home:

Please join EJ's team of Sidekicks against cancer by liking his page on Facebook.

Shine Bright,

<3 Stormy