Burkley’s Story

Site created on February 23, 2021


Burkley was found to have a large tumor in her abdomen on February 22, 2021, at the age of 3. She was later diagnosed with Stage IV Neuroblastoma. She had a large 17 cm tumor in her abdomen which originated from the left adrenal gland and it had obliterated her left kidney. She had metastasis into adjacent lymph nodes in her abdomen as well as some lymph nodes in her left clavicle area and her bone marrow. In February she had a very successful surgery which removed the tumor and bulk of the abdominal lymph nodes. Later, genetic testing found the tumor to be the more aggressive form of neuroblastoma (amplified pathology). 

Standard treatment for neuroblastoma at our hospital is broken down into several different phases treatments. 

1) 6 cycles of inpatient chemo over about 5-6 months, surgery to remove the malignancy, and stem cell extraction. 2) TWO Stem cell transplants back to back 3) Radiation 4) Immunotherapy. We are also participating in a clinical trial where she will take a medication for 2 years after treatment. 

Feel free to follow along on Burkley's journey in battling Stage IV neuroblastoma. 

Newest Update

Journal entry by Caroline Ford

Hi all! 
 
Update from the last few weeks-- Burkley is doing great! She had a nephrology appt who felt like her single kidney is doing great! We now have an upcoming appointment with the surgeon to schedule her port removal!  
 
Some of you may have already seen this on social media, but I did want to share with those who are not on social media: 
 
 Books for Burkley   
 
Our friend Jennifer Bell  is throwing a virtual book party in Burkley’s honor to earn books and activities for the children on the MUSC Children's Oncology floor.  The event opens today and runs through Friday.
 
We are so fortunate that Burkley only has happy memories of MUSC. This is due to the wonderful staff at MUSC and the programs which provided books, toys, crafts, sheets, and so much more. These gifts get children and their families through extremely hard days!
You can purchase books for kids in your own life (hello Christmas list ) or you can make a tax-deductible donation toward our cause.  Both are matched by 50% in free books for our drive!
Here is the link for the book party: www.facebook.com/groups/jenniferswriteyourstoryparty/
If you’d like to donate, visit www.CheerForBooks.com/non-profit.
 
Enter the consultant ID “g9381” and event name “Books for Burkley.”  You’ll be able to print a tax receipt after donating.
 
Here are a few pictures of Burkley enjoying Fall in South Carolina! 
Patients and caregivers love hearing from you; add a comment to show your support.
Help Burkley Stay Connected to Family and Friends

Your $30 donation to CaringBridge will help keep this site online for one month. And if you donate by Dec. 7, CaringBridge board member, Sarah Krevans, will match your donation, dollar for dollar, up to $25,000.

Make your gift in honor of Burkley by midnight on Dec. 7 to be counted!

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