Wednesday, December 14, 2011

Awareness Beads is Tweeting!

Awareness Beads is proud to announce that we have joined twitter and are working on getting back up and running for 2012!

Follow us for quick updates on where we're at as far as opening the organization back up for mailing, and to see how the kids we know and/or follow are doing!

www.twitter.com/AwarenessBeads

Wednesday, November 30, 2011

Update on Wes Pak

Hello Awareness Beads followers!  It has been such a long time since our blog or Facebook page was updated, and that is long overdue, but for now, we are here to give you some information about our little buddy, Jedi, Wes Pak.

Awareness Beads met Wes during his very first hospital stay after being diagnosed with Stage 4 High Risk Neuroblastoma.  That was at the end of June, and we met him in the beginning of July 2011.

Since our first meeting, we have kept in touch with Wes' family and have seen Jedi Soldier Wes several times, including a fundraising event for him in October.

Wes has undergone many rounds of chemotherapy and other procedures necessary for his treatment, and today, Jedi Wes had his big surgery.

After being told by the surgeons at CHKD, Wes' home hospital, that they could not possibly remove all of his tumor, Wes' parents, with the help of their friends and family, began to look into more options, ultimately deciding to take Wes to NYC for his surgery.

Wes and his parents flew to New York a few days ago, and this morning, at 7:45am, Wes went into surgery.

Around 6:00pm, Wes was out of surgery and taken to the PICU.  The team in NYC removed all of the tumor they could see!

Wes lost 3 units of blood during the surgery, but it was given back to him and he is stable.  His kidney was saved, however he did lose the tip of his pancreas, but the team says it shouldn't have any effect on Wes.

As part of Wes' Army, Awareness Beads is very thankful to share this wonderful news with our followers.  We will have a post later on about the status of our organization, but tonight, it is all about our friend Wes.

Wes and his family still have a long road ahead, but today was a huge step forward in his journey.


To join Wes' Army, follow him on Facebook at Wes' Fight Against Neuroblastoma.

We love you Jedi Wes!




All our love,
Stormy and Jordan
Awareness Beads

Friday, September 30, 2011

Fly High Kailee

It is with heavy hearts that we announce an addition to the previous list.


Kailee Ours has earned her wings.




Rest in peace beautiful girl.

Wednesday, September 28, 2011

Just a Quick Update

We will do a better post later, but we just wanted to share the following:


Unfortuantely, we have lost a few little warriors.
Rest in peace Ethan Jostad, Lindsey Steltenpohl, Layla Williford, Lennon Hunt, Faith Fulmer, Kyan Spearko, Caleb Lanz, Emma White.
It is truly heartbreaking to post that many names at once.
We shouldn't even have to post one.



Jordan got to meet Emma Bulich.  He made beads with her and there will be another post just about that later.


Our baby cousin Connor is currently in ICU at CHKD recovering from a 7 hour heart surgery that he had Monday.  We will update on him in the near future.
Our buddy Wes is also in the hospital right now fighting an infection.

Please keep Wes and Connor and all of our warriors in your thoughts and prayers.


I'll leave you with a link to Wes' Journey video that I finished tonight.


Wes' Journey




Until next time,
Awareness Beads

Wednesday, August 10, 2011

Two New Faces!

Awareness Beads would like to introduce to our supporters two new faces we've started following!

Both new faces are local kids!


This is miss Ashley Burnette.   Ashley is from Greenville, but lives in Raleigh, NC.  This makes her an Awareness Beads local kid!! Ashley is the daughter of Nicole and Hunter Burnette, and younger sister to Olivia Burnette.  Ashley fights Neuroblastoma, and a form of Lymphoma. 
 Recently, Ashley's wish came true.  The Make-A-Wish Foundation surprised Ashley and her sister with their wish trip to Disney World earlier than they had planned.   Olivia and Ashley were very surprised!   To learn more about Ashley, you can follow her updates on her site http://www.ashleyburnette.com/, and on Facebook at Praying For Ashley Burnette.  Awareness Beads has contacted Ashley's parents and we are hoping to be able to make an Awareness Beads Local Visit with her!



Next up is miss Emma Bulich.  Emma is treated at CHKD, the same hospital as Wes, for T-Cell ALL - a form of Leukemia.  Emma has six siblings, but is the only girl her mommy and daddy have so she is a spoiled little princess!  Emma has endured seven hospital stays, proving her strength and bravery.
 Emma was diagnosed with her cancer on Christmas Day.  This heartbreaking fact leads one to appreciate Emma's smile and the sparkle in her eyes a little more, because any person, especially a child, that can get through something as big as a cancer diagnosis on Christmas proves to be among the strongest people in the world.  Emma was discharged from her seventh hospital stay on Monday, but goes back spontaneously for fevers.  She has scheduled clinic appointments for chemo.  To learn more about Emma, please visit Prayers for EMMA on Facebook.  Awareness Beads has contacted Emma's parents and we are working on meeting her for a Local Visit!




Please join us in prayer for Ashley and Emma, and keep checking in on us to see if we get to visit with them!


Monday, July 25, 2011

Awareness Beads Visits Wes Pak!

On Wednesday, July 13, 2011, Awareness Beads went to the Children's Hospital of the King's Daughters (CHKD) in Norfolk, Va, to meet five-year-old Wes Pak.




Wes was diagnosed with Stage III High Risk Neuroblastoma cancer towards the end of June 2011.

 


He is the oldest of two children, making him big brother to his baby brother Ebin, who was born in March 2011.  Their parents are Myong and Krista Pak.




Wes loves Star Wars and anything green.  He is really good at playing video games, and can tell you all about Darth Vader and droids.   He can also sing the Star Wars themes, and has even done the Darth Vader theme with the word "ow" while receiving part of his treatment.




 We really enjoyed our time with "Jedi Wes".  He made us laugh and amazed us with his video gaming skills and creativity, and of course, his Star Wars knowledge. 




This is our buddy Wes yesterday.   His hair has already fallen almost completely out after only one round of chemo.  He is currently inpatient at CHKD for round two.  



To learn more about Wes, follow his story at www.caringbridge.org/visit/wespak, and/or on Facebook at Wes' Fight Against Neuroblastoma.



Please pray for Wes!



We love you Jedi Wes!  Keep fighting buddy!

The Semi-Major Changes We've Been Talking About

Hello Awareness Beads supporters.   First of all, thank you to every single person who reads this blog, follows us on Facebook, or supports us and our cause in any other way.

Jordan and I have been talking and have made a decision that will affect Awareness Beads and the way we operate in what we hope will be a positive way.


We have decided to make this organization temporarily primarily local.

In other words, we will be visiting children in hospitals that are near our homes and the surrounding areas and making beads with them there in person.

We will also be taking stuffed animals, blankets, pillows, and/or other goodies that will have a positive affect on a hospitalized child.

We will be doing this and not taking any more orders for mail for the time being.   However, when we do begin to take orders again, we will still visit hospitals, making Awareness Beads bigger and more effective.



Details:

When Awareness Beads was started, we thought it was a great idea to be able to ship beads in the mail to families we followed and learned about, and also to supporters like us just wanting to make a difference.   And it was.   It was a wonderful idea, however, we have run into many challenges including beads getting lost in the mail, financial problems that caused us to have a delay in shipping beads due to the cost, and a lack of time due to work and school.


We want to make a difference and in a positive way, so after discussing it, we have decided not to mail beads for the time being.   We intend to re-open Awareness Beads to everyone as it was when we launched the organization, but it is going to take us a little while to get into a position where we can do so.



As a co-founder, I feel that it is my responsibility to explain the changes a little bit further.   I am in the process of moving from my parents' home to my new apartment to attend college.   After I move, I am going to begin looking for a job in the city where I will be living.   When I am settled and working, Awareness Beads will re-open to every person interested, just as it was in April.   The reason for this temporary change is to give our organization the stability and capability to provide and please everyone in a timely manner, as we have failed to do so in the past.


When Awareness Beads is re-opened to the public in a few months, everything will be more organized.  There will be a weekly schedule to control the amount of orders and the time to process and ship them, allowing every order to be delivered within two weeks of ordering.  This will make our lives easier, and our supporters happier.


In the meantime, Awareness Beads will visit our local and surrounding hospitals as I mentioned before, and as we have already started with Wes Pak at CHKD in Norfolk.


We will continue to visit hospitals when we re-open to the public as well.


This is something that means a lot to us, and that we feel will benefit our organization.



Orders that have been taken before this date will be filled slowly but surely and every bead ordered before today will be delivered before Awareness Beads re-opens to the world.   Rest assured that your beads will arrive, and please accept our apologies for the time.




Thank you again to all of our supporters for your interest, kindness, patience, and tolerance with us as we learned the ropes and now are making changes to make Awareness Beads the organization we originally wanted it to be.



Please stay tuned with this blog and our Facebook page, as we will continue to update on Awareness Beads status and we will post about our hospital visits.





Thank you for your cooperation,

Stormy and Jordan

Sunday, May 8, 2011

Happy Mother's Day

We at Awareness Beads would like to wish EVERY mother in this world a wonderful mother's day.



Whether your child is here and healthy, here and fighting, or spending today with you in spirit from heaven, we hope your day was/is wonderful.




To those of us who do not yet have children, may we remember to celebrate our mothers and grandmothers for giving us life, and probably a lot more.  May we also remember the moms that spent or are spending today and tonight in a hospital room watching their baby fight for his/her life.  May we lift them all up in continuous prayer.




Happy Mother's Day everyone.

Lindsey Needs Us

I posted about Lindsey Steltenpohl earlier this week.


Lindsey has DIPG and was put into the hospital becuase her condition got really bad, really fast.


She was supposed to have an MRI, but they couldn't do it because of inability to control secretions.


Doctors are now telling Lindsey's parents that there is no need for an MRI.


They are talking about feeding tubes and home health care.


Lindsey's parents feel like they are the only ones who still have hope.


Please lift Lindsey and her family up in prayer for her earthly healing.  No one is ready to let sweet Lindsey go.



Also, we have permission to use her name for Awareness Beads, so place your "Love On Lindsey" order today.  All proceeds go to DIPG research in honor of Lindsey's fight. 



Pray for Lindsey and the Steltenpohl family, and to learn more, visit: www.caringbridge.org/visit/lindseysteltenpohl





We love you Lindsey, and we will never stop!



Saturday, May 7, 2011

Happy Birthday Audrianna!

Audrianna Bartol is 5 years old today!  Audrianna is fighting Stage IV Neuroblastoma and has been in the fight since she was 3 1/2.  She is a true fighter and hero!  Happy birthday Audrianna!  We love you!  

Goodbye Vinny

Childhood cancer has taken another from us today.  Vincent fought a long and brave battle with Neuroblastoma cancer.  He leaves behind his parents and two brothers along with many other loved ones.  


Fly high Vinny.  We will miss you little buddy.


Friday, May 6, 2011

Pray For Lindsey

Lindsey Steltenpohl is one of the children we follow.  Lindsey has been battling DIPG for nearly 400 days.


Right now she isn't doing well.



To stay updated and learn more about sweet little Lindsey, please visit www.caringbridge.org/visit/lindseysteltenpohl




Please pray for Lindsey! 



Thursday, May 5, 2011

Happy Birthday Cooper!

Cooper Bryan is 8 years old today!  Cooper was diagnosed with cancer at age 4 and is a SURVIVOR!  He lives here in NC and I am going to go and help out with his team at Relay for Life this month!  Happy birthday Super Cooper!  We love you!

Olivia's Special Request

Olivia Haveri is an eight year old girl that lives here in Goldsboro and goes to the same church as me (Stormy).  Many of you reading this probably already know Livi's story, but for those who don't, here's a brief version:

Last summer, on July 5th (the day before my birthday) to be exact, Olivia was diagnosed with Stage III Burkitt's Non-Hodgkins Lymphoma cancer.  She was only seven at the time. The third of four children, Olivia is a middle child who loves horses. dancing, singing, anything blue, and Jesus Christ our Lord and Savior.  During her battle, Olivia underwent four rounds of chemotherapy, a few spinal taps, and lots of tests and scans at Pitt Memorial Children's Hospital in Greenville, NC.  This all took about two months, and Olivia had scans again to see if her treatment was working.   On September 1st, ironically the first day of Childhood Cancer Awareness Month, Livi's scan results were in and miraculously showed NO CANCER!  She completed one more round of chemo as protocol, and it is now May and the cancer has still not returned! Praise God!


So anyway, Olivia and her family go to the same church I go to, so I know them personally.  Last night at church, I took Olivia her Awareness Beads.  She absolutely LOVED them!
When service was over, Olivia came over to the Carpenter's House, where we have teen church, and she came and talked to me for a few minutes.  She told me how she was doing and how her horse was and how much she loved her necklace.  Then she got quiet for a minute just looking at her beads.  Finally. she looked up at me and said that she was going on a beach trip this coming weekend with her mom with a bunch of other kids from the hospital and she just knew they would love to have some beads and she would love to have some more to pass around to them.  It was a great idea and the way she smiled and her eyes lit up I just couldn't tell her no.  So, last night when I got home, I started making beads!  I beaded until I fell asleep.  I ended up having a little less than 20 necklaces to take over to Olivia for her to take with her to the beach.  All of them had yellow to represent childhood cancer and another color, and they all said either "love", "faith", or "hope".

There are about 100 kids going on the beach trip.  I wish I could send a necklace for all of them, but there isn't enough time to get them made, and Mrs. Emmy, Olivia's mom, said they probably wouldn't see all the kids anyway.  This was a wonderful idea that Olivia had and I am so glad I was able to make the ones I did for her to take.  The lives and hearts of the kids and families that get those few necklaces will be touched, and that is our mission; to touch lives and hearts and make kids smile.  Thank you Olivia for having that awesome idea and for having the courage to ask me about it!  I hope you have a great time at the beach!


Olivia (right) and little sister Natalie (left) with the beads for the kids going to the beach!

Tuesday, May 3, 2011

Just A Little Bit About Us!

Awareness Beads would like to take a few minutes to tell you about who we are as people.

First off, we would like to share that we are a young couple.  We started dating on February 21 of 2011 after realizing how much we have in common and admitting that we each had a crush on the other.

We both follow children facing horrible diseases that no person should ever have to face, especially a child.  We had a yearning to help, and after some brainstorming, Awareness Beads was born.

Beads are just plastic, but when they are made with love and care for a person and a cause that matters, that plastic can reach out and touch hearts, and tell stories, and raise awareness.  This is our goal.




All our love,
   Stormy and Jordan

Awareness Beads visits Rosewood Elementary for Lexi and CF

Today, Awareness Beads visited Mrs. Baynes' first grade class at Rosewood Elementary.


 Stormy's little sister is in this class and there is a student in the class named Lexi.


 Lexi has Cystic Fibrosis, and today she had to go to the doctor for her check-up.


 Mrs. Baynes allowed Stormy to come in and help the class of 22 make beads for Lexi.


 The students had a great time and they were excited to surprise their friend.


 Tomorrow, Lexi will be back at school and all of her classmates will be wearing their beads.


 It was really cool to see how excited they were to make the beads and surprise Lexi.


 They also learned a little bit about CF and A-B-A-B patterns while making their beads.


 This is definitely something Awareness Beads will do again in the future.


 After all, Awareness Beads is all about learning, smiling, and spreading awareness!





 Thanks Mrs. Baynes, Rosewood Elementary, and Lexi's parents for allowing us to do this!


Mrs. Baynes' first grade class wearing their "Lexi" CF Awareness Beads.


To learn more about Lexi and CF, please visit: www.lexis-angels.blogspot.com











Monday, May 2, 2011

A Few Little People We Like To Call Inspiration!


















Awareness Beads Welcomes You!

Hello everyone and welcome to the official blog for Awareness Beads!

We are really excited about the way Awareness Beads has taken off on Facebook, and we decided to branch out with this blog!  Here we will post about the beads, but we will also post about the families we do this for!


To follow our blog even if you aren't a blogger, you can follow via e-mail.  There is a link in the sidebar.


Also in the sidebar is our current logo.  Clicking on the logo will send you to our Facebook page!


Thanks everyone for your amazing support and donations to Awareness Beads.  We look forward to using this blog to make an even bigger difference!