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