​Neuroblastoma 

"Neuroblastoma is a childhood cancer that starts in young nerve cells called neuroblasts. In a healthy child, these cells become the nerves that control functions like heartbeat and blood pressure and the way the body reacts to stress. In neuroblastoma, some of the neuroblasts do not mature. Instead, they divide and grow into tumors. Cancer in children is rare, and neuroblastoma accounts for less than 10% of all childhood cancers. Doctors group neuroblastoma into 3 levels: low, intermediate, and high risk. Risk refers to how difficult the neuroblastoma is to treat." -Seattle Children's Hospital 

We are not neuroblastoma experts, and have included multiple links below where you can learn more about the disease.  

LINKS

http://www.seattlechildrens.org/medical-conditions/cancers-tumors/neuroblastoma/

https://www.childrensoncologygroup.org/index.php/newly-diagnosed-with-neuroblastoma

https://www.mskcc.org/pediatrics/cancer-care/types/neuroblastoma?gclid=Cj0KCQjwzcbWBRDmARIsAM6uChWkpJoNsmAW2o8slQz3cMn6C9RTArgFtfhPJSdx3__y_nR4yWELdZwaAokwEALw_wcB

https://www.cancer.org/cancer/neuroblastoma/about/what-is-neuroblastoma.html

https://www.mayoclinic.org/diseases-conditions/neuroblastoma/symptoms-causes/syc-20351017

https://www.stjude.org/disease/neuroblastoma.html

https://beatnb.org/neuroblastoma/

 

Hunter Rose's Diagnosis & Treatment

DIAGNOSIS

Hunter Rose's neuroblastoma was diagnosed on September 22, 2017 as stage four high risk, which in her case means that it spread from the origin tumor (near abdomen) to her lymph nodes, and into hip and jaw bones through the bone. 

We were lucky in how it was discovered, as Hunter Rose showed no signs or symptoms. It was actually found by her dentist (Harlyn Susarla of Stellar Dentisty) through a routine dental check up. We thank God for Dr. Susarla as she chose to do a full panoramic x-ray that day on a gut feeling! We say that was the Holy Spirit guiding her, Amen!  The dental x-ray showed a tiny solid mass tumor on her jaw. After many appointments with specialists, scans, bone marrow and tumor biopsies, Seattle Children's Hospital diagnosed her. It was a difficult day we won't ever forget - you can see the first social media video we shared about Hunter Rose's diagnosis by clicking here.  

TREATMENT

There are several different options for treatment. The following treatment regimen is specific to Hunter Rose's case, and is the C.O.G. (Children's Oncology Group) plan for high risk stage four neuroblastoma. Hunter Rose's treatment (October 2017 - March 2020)

*Diagnosis (scans, bone marrow and tumor biopsies, blood work)

*Chemotherapy (5 cycles)

*Surgery (tumor removal)

*Stem cell transplants (two)

*Radiation treatments (12)

*Immune therapy (months)  

*Cancer Vaccine Trial (1 year at Sloan Kettering Hospital NYV)

Hunter had a Double Power Hickman Line and a NG FeedingTube for 18 months in which she received three bags of nourish formula per day and all of her treatment medicines through.

The treatment was harsh and comes with risks of up to 90% that she will get a secondary disease such as Leukemia, kidney disease, liver disease, and heart disease. Treatment also comes with potential side effects such as infertility, hearing loss (she has now), trouble walking, and self esteem issues for years to come.

How to Help

There are several ways you can help. Supporting the following organizations and non profits is a great way to help further research studies seeking a cure, and assist families currently facing childhood cancer. 

LINKS

http://www.seattlechildrens.org/ways-to-help/donate/

https://give.strongagainstcancer.org/donate

http://www.footprintsoffight.org

https://jtstrongapparel.com

https://sweetteaconnections.org

https://www.alexslemonade.org

http://www.cncfhope.org/Home

http://www.nant.org/Patients_and_Families/howhelp.php

https://beatnb.org/neuroblastoma/

https://bepositive.org

https://familyreach.org

Others Ways to Help

Join Hunter Rose's newsletter below, and share the website and her social media channels. You may also assist our family directly through our YouCaring page listed below. 

Website: HunterRose.org

Facebook: #PrayForHunterRose

YouCaring: https://www.youcaring.com/jaykarajones-1012484

SUBSCRIBE TO ALWAYS KEEP UP WITH HUNTER ROSE!
 

Hunter Rose's journey is touching a lot of lives, and we would love to send you updates. ​