The brightest blue eyes and most contagious grin…..that’s Abigail. Abigail is the fifth child of Aaron and Annabeth. Her siblings are Mary (12), Hyrum (11), Elisabeth (9) and Rachel (6).
Abigail was diagnosed with Neuroblastoma on January 15, 2011 at the age of 19 months old. Pathology later indicated it was stage 4, high-risk, mycn amplified. Her main tumor was on her left adrenal gland, and had grown up her spine and around her aorta. All her major bones had metastasis and her marrow was full of cancer. It was killing her and she was in PICU on a respirator for several weeks.
Abigail has had 6 rounds of chemotherapy, has used a non-toxic alternative cancer treatment called Protocel, and has had her tumor successfully resected. She is currently NED (No evidence of disease)!!! Her response was, as her first oncologist put it, “much better than average, much better than average.” He said that out of his experience, maybe 5% of NB cases have had results like hers.
We chose not to do a tandem stem-cell transplant/high dose chemo for Abigail and instead began antibody therapy at Memorial Sloan-Kettering Cancer Center in NYC.
- ~~Six rounds of chemotherapy from Jan-Sept 2011.
- ~~3F8 antibody therapy at MSK began in October ’11 and still continues
- ~~Radiation therapy at Banner Good Samaritan in October ’11.
- ~~Abigail had one course of cis-Retinoic acid that she had severe reactions to and we choose to take her off that drug.
We have continued throughout her entire process to implement and integrate holistic and natural healing processes. She has experienced Reiki, toning, acupressure, photonic energy, detoxification, NAET, essential oils and a host of oral supplements!
She reached NED after 5 months of treatment and has thankfully stayed NED. She has mild to moderate hearing loss in the highest range. She recently had a fracture in her collarbone due to weakened bones from treatment. It is healing on its own.
We are so blessed to have this angel on earth. She continues to be an instrument in God’s hand in showing us His daily miracles.
Neuroblastoma (NB) is a pediatric cancer that affects approximately 700 children in the United States each year. Out of 13,000 cases of pediatric cancer, NB numbers are small. Approximately 8 children per million under the age of 15 are diagnosed with neuroblastoma. But they account for about 15% of pediatric cancer deaths. About 45% of NB cases are high-risk. (So Abigail is about a 4 in a million kind-of girl when it comes to cancer, 1 in a million with every other aspect!) It’s kind of a mystery cancer and high-risk, myc-n amplified cases have a dismal survival rate. From a PubMed clinical oncology article: “Neuroblastoma is an aggressive childhood disease of the sympathetic nervous system. Treatments are often ineffective and have serious side effects.”
From John M. Maris, MD:
“The field of pediatric oncology has come a long way in the last several decades. Cure rates have improved dramatically and advances in childhood cancer research has provided seminal insights into the cancer problem in general. Today, 4 out 5 children diagnosed with cancer can be cured.
The major problem is that this cure rate has come at significant cost. First, the intensity of chemotherapy and radiation therapy used to achieve this cure rate has increased substantially, so that the majority of survivors have significant long-term complications of therapy. Clearly, cure is not enough. Of equal urgency, several cancers, especially the solid malignancies, have not shown improvement in cure rates and current treatments are at their maximal intensity. Indeed, several cancers have seen no significant progress in over a decade and childhood cancer remains the number one cause of death in children from disease (accidents claim the most lives).”
(Abigail’s neuroblastoma is a solid malignancy).
From the NB wiki about neuroblastoma:
“Most long-term survivors alive today had low or intermediate risk disease and milder courses of treatment compared to high-risk disease. The majority of survivors have long-term effects from the treatment. Survivors of intermediate and high-risk treatment often experience hearing loss. Growth reduction, thyroid function disorders, learning difficulties, and greater risk of secondary cancers affect survivors of high-risk disease. An estimated two of three survivors of childhood cancer will ultimately develop at least one chronic and sometimes life-threatening health problem within 20 to 30 years after the cancer diagnosis. These results were confirmed in a National Cancer Institute publication released July 2009 comparing outcomes of neuroblastoma survivors to siblings. The study reported that survivors are more likely than siblings to develop chronic neurological, sensory, endocrine, and musculoskeletal complications and less likely to be married or have a high income job.”
Because Abigail’s type of neuroblastoma has a proven record of not being very curable with conventional treatment, and because I am her mom, I cannot passively sit by while she goes through chemotherapy, surgery, radiation, and antibody therapy. I have studied and continue to study many complementary and alternative medicine (CAM) modalities.
Before Abigail started her 2nd round of chemo, we started her on Protocel. We feel it has truly helped kill the cancer and decrease side-effects of treatment. Because of the proven late-effects mentioned in the above NB info, we are actively seeking ways to minimize toxicity, to supply her body with the vital nutrients and minerals necessary to rebuild damaged cells, and to heal on mental and physiological levels.
We are learning about Traditional Chinese Medicine, which has been clinically studied in conjunction with chemotherapy. We are learning about energy of the body. We are learning about dietary changes and nutritional therapies. There is a plethora of information, and we are hoping to employ any available means to help her navigate safely through the treatment, help her body fight and overcome Minimal Residual Disease, and LIVE FREE OF CANCER!!
I would be happy to share what information I have learned about CAM if you are in need of it. Please contact me via the contact form.
**One of my goals is to create a forum dedicated to Integrative Therapies for children with cancer. If you have any computer expertise, me and countless other parents and families would be grateful for your help!