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

Hello everyone! Burkley had her 6 month MIBG scan today and we are so thankful to say she remains NED, no evidence of disease!!! 

In other exciting news, the medication Burkley has been taking as part of a clinic trial for the last 18 months was recently FDA approved. We have known the medication as DFMO,  but it is now marketed as IWILFIN. It is the first FDA approved medication to reduce the risk of relapse for pediatric neuroblastoma. Our amazing oncologist at MUSC, Dr. Jacqueline Kraveka, has been studying this medication for the last 14 years. Through the trial they have found this medication reduces the risk of relapse by more than 50% and boosts survival by nearly 70%. Burkley has been incredibly lucky to have had this medication and she will continue to take it until next summer as planned! 

Thank you to everyone who has donated to MUSC for pediatric cancer research, your money went directly to Dr. Kraveka's lab-- the only pediatric cancer research lab in South Carolina. Thanks to you, neuroblastoma kids everywhere will be able to benefit from this medication!  

Since I last posted over the summer, Burkley has begun Kindergarten and is thriving. She radiates joy to those around her.  She is always making us laugh and teaches us life lessons that are wise beyond her years. She is pure love, happiness, hope and life. We are blessed beyond measure and full of gratitude. 

Happy Holidays to all and wishing you a new year filled with love, happiness, hope and life as well. 

Patients and caregivers love hearing from you; add a comment to show your support.
Help Burkley Stay Connected to Family and Friends

Your $25 donation to CaringBridge will help keep this site online for two weeks. And if you donate by March 28, a generous CaringBridge donor will match your donation, dollar for dollar, up to $10,000.

Make your gift in honor of Burkley by midnight on March 28 to be counted!

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top