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.