In New Zealand each year, one to two children are diagnosed with DIPG - Diffuse Intrinsic Pontine Glioma (an inoperable brain tumor). By the time of diagnosis, the child has on average 3-9 months to live. Supporting Elyse vs DIPG is a kiwi cause raising awareness and providing documented information around effective treatment of DIPG using natural alternative medicine. With this we aim to advance education in the diagnosis, treatment, care and eventually the recovery of DIPG sufferers in New Zealand. The cause was founded in April 2016 originally as the Supporting Elyse Cause for Taupo family (now 6 year old) Elyse Johnson. Elyse was diagnosed on the 9th April 2016 at the age of just 2years with DIPG. Doctors gave her just 3-9 months to live and she wasn’t expected to see her 3rd Birthday. With the financial support from the Supporting Elysevs DIPG Cause the family have been able to purchase the alternative medicine (full list below) that is now shrinking the Glioma, that being Tilray CBD THC Oil: (Medicinal Cannabis Oil). This is not government funded and costs the family thousands of dollars every month. Because of this huge price tag, Medicinal Cannabis Oil is unreachable for many families. Since 2016 we have run multiple fundraiser campaigns with 100% of the funds going directly to the cause.The Supporting Elyse vs DIPG social media page has an ever growing number of followers and Elyse has been in the news repeatedly since diagnosis building a community of followers and supporters globally who are in awe of her breath-taking battle, wanting to understand more about her alternative method of beating the deadly tumor. Elyse is a pioneer in the eyes of the Childhood Brain Cancer Community being the first child ever to have their tumor shrink using 100% natural treatment and zero radiation or big pharma drugs.
The continuation of her treatment is critical not only for her, but for the hope of every other child diagnosed with DIPG globally.
Elyse's list of natural alternative medicines:
PLEASE NOTE, we do not recommend you administer any of these medicines to your child without first talking to your pediatrician. Always check for allergies and or allergic reactions before using any essential oils or other alternative medicines listed below.
Medicinal Cannabis Oil Tilray 10:10 CBD:THC – Prescription Only 7ml (This has been gradually increased over time DO NOT start on this dosage). This is an oral medicine costing $3.5k every month. Lypo Tumeric—Curcumin – Available from pharmacy 6ml Mix with Olive Oil and Black Pepper Essential Oil Turmeric has constituents that have been found to exert antioxidant, anti-inflammatory and anti-mutagenic activity, which means it helps combat many of the same illnesses that boswellia does. A number of laboratory studies on cancer cells have shown that curcumin does have anticancer effects. It seems to be able to kill cancer cells and prevent more from growing. Lypo-Spheric Vitamin C – Available from pharmacy 2000mg Mixed with water Studies have shown that high doses of vitamin C may slow the growth and spread of prostate, pancreatic, liver, colon, and other types of cancer cells. Vitamin D – Available from Pharmacy 10,000iu Mix with olive oil and cannabis oil Juice Plus Vege and Fruit Capsules – Available Online Mix with water TBL-12 – Online via tbl-12.com 2x tubs per day TBL-12 is a natural product made out of marine ingredients, with the main ingredient being bêche-de-mer (sea cucumber). It works by modulating the immune system, which in turn helps fight cancer and other diseases. One box of 52 tubs (one months supply) costs NZD$1,124.17. Liquid Hope – Online via functionalformularies.com This is a liquid food full of organic vegetables and herbs to promote health and vitality and support the body’s natural immune system. This costs $500.00 every 2 weeks. Pro biotics Pro biotics are used to help cancer patients. Pro biotics stimulate the immune system and eliminate carcinogens and directly kill tumor cells. These good bacteria also secrete B vitamins and vitamin K, which may slow tumor growth. Essential Oils from Doterra -Available Online Frankincense Extract—Boswellia Peppermint Copaiba Myrrh Tumeric Black Pepper A few drops of each with Olive Oil rub on back of neck and diffuse. Dandelion Dandelion is a very rich source of beta-carotene which we convert into vitamin A. This flowering plant is also rich in vitamin C, fiber, potassium, iron, calcium, magnesium, zinc, and phosphorus. It's a good place to get B complex vitamins, trace minerals, organic sodium, and even some vitamin D too. Dandelion also contains protein, more than spinach. Dandelion may slow cancer's growth and prevent it from spreading. The leaves are especially rich in the antioxidants and phytonutrients that combat cancer. Coconut Oil Lauric acid is an active anti-cancer component in coconut oil that constitutes 50 percent of its makeup. Lauric acid is also beneficial in deterring parasites, bacteria, fungi, yeasts, and viruses.
DIPG From Wikipedia, the free encyclopedia
A diffuse intrinsic pontine glioma (DIPG) is a tumour located in the pons (middle) of the brain stem. The brain stem is the bottommost portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumours occur in the pons and are diffusely infiltrating (they grow amidst the nerves), and therefore cannot be surgically removed. Glioma is a general name for any tumour that arises from the supportive tissue called glia, which help keep the neurons in place and functioning well. The brain stem contains all of the afferent (incoming) neurons within the spinal cord, as well as important structures involved in eye movements and in face and throat muscle control and sensation.[1][2]
Prognosis[edit]DIPG has a 0% survival rate. The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1- and 2-year survival rates are approximately 30% and less than 10%, respectively. These statistics make DIPG one of the most devastating pediatric cancers.[3] Although 75–85% of patients show some improvement in their symptoms after radiation therapy, DIPGs almost always begin to grow again (called recurrence, relapse, or progression). Clinical trials have reported that the median time between radiation therapy and progression is 5–8.8 months.[4] Patients whose tumours begin to grow again may be eligible for Pilot, Phase I, or Phase II clinical trials. These trials use experimental drugs or other experimental therapeutic approaches to try to slow or stop the growth of the tumour. However, clinical trials have not shown any significant benefit from experimental DIPG therapies so far.[4] DIPGs that progress usually grow quickly and affect important parts of the brain. The median time from tumour progression to death is usually very short, between 1 and 4.5 months. During this time, doctors focus on palliative care: controlling symptoms and making the patient as comfortable as possible.[4] Treatment[edit]The standard treatment for DIPG is 6 weeks of radiation therapy, which often dramatically improves symptoms. However, symptoms usually recur after 6 to 9 months and progress rapidly.[5] Neurosurgery[edit]Surgery to attempt tumour removal is usually not possible or advisable for DIPG. By nature, these tumours invade diffusely throughout the brain stem, growing between normal nerve cells. Aggressive surgery would cause severe damage to neural structures vital for arm and leg movement, eye movement, swallowing, breathing, and even consciousness. Surgery with less than total removal can be performed for many focal brain stem gliomas. Such surgery often results in quality long-term survival, without administering chemotherapy or radiotherapy immediately after surgery, even when a child has residual tumour. Surgery is particularly useful for tumours that grow out (exophytic) from the brain stem. Focal brain stem tumours that arise at the top back of the midbrain (tectal gliomas) are managed conservatively, without surgical removal. Nevertheless, shunt placement or ventriculostomy for hydrocephalus (see below) is frequently necessary. These tumours have been reported as stable for many years or decades without any intervention other than shunting. Radiotherapy[edit]Conventional radiotherapy, limited to the involved area of tumour, is the mainstay of treatment for DIPG. A total radiation dosage ranging from 5400 to 6000 cGy, administered in daily fractions of 150 to 200 cGy over 6 weeks, is standard. Hyperfractionated (twice-daily) radiotherapy was used previously to deliver higher radiation dosages, but did not lead to improved survival. Radiosurgery (e.g., gamma knife or cyberknife) has no role in the treatment of DIPG. Chemotherapy and other drug therapies[edit]The role of chemotherapy in DIPG remains unclear. Studies have shown little improvement in survival, although efforts (see below) through the Children's Oncology Group (COG), Paediatric Brain Tumour Consortium (PBTC), and others are underway to explore further the use of chemotherapy and other drugs. Drugs that increase the effect of radiotherapy (radiosensitizers) have shown no added benefit, but promising new agents are under investigation. Immunotherapy with beta-interferon and other drugs has also had little effect in trials. Intensive or high-dose chemotherapy with autologous bone marrow transplantation or peripheral blood stem cell rescue has not demonstrated any effectiveness in brain stem gliomas. Future clinical trials may involve medicines designed to interfere with cellular pathways (signal transfer inhibitors), or other approaches that alter the tumor or its environment.[6][7][8] Research[edit]As is the case with most brain tumors, a major difficulty in treating DIPG is overcoming the blood–brain barrier.[9][10] In the brain—unlike in other areas of the body, where substances can pass freely from the blood into the tissue—there is some space between the cells lining the blood vessels. Thus, the movement of substances into the brain is significantly limited. This barrier is formed by the lining cells of the vessels as well as by projections from nearby astrocytes. These two types of cells are knitted together by proteins to form what are called "tight junctions". The entire structure is called the blood–brain barrier (BBB). It prevents chemicals, toxins, bacteria, and other substances from getting into the brain, and thus serves a daily protective function. However, with diseases such as brain tumors, the BBB can also prevent diagnostic and therapeutic agents from reaching their target. Researchers and clinicians have tried several methods to overcome the blood–brain barrier:
Intrathecal/intraventricular administration: Chemotherapy is injected directly into the cerebrospinal fluid, either through a lumbar puncture or a surgically implanted catheter.
Intracerebral implants: A neurosurgeon creates a cavity within a tumor to allow the placement of dime-sized chemotherapy wafers, such as Gliadel wafers. Several of these wafers can be placed at the time of surgery and will release a chemotherapy agent (carmustine) slowly over time. This provides a much higher concentration of chemotherapy in the brain than can be obtained with intravenous administration, and it causes fewer systemic side effects. However, it is an option only for patients with surgically resectable tumours, so it cannot be used to treat DIPG.[11]
Osmotic blood–brain barrier disruption (BBBD): The cells of the blood–brain barrier are shrunk by a concentrated sugar solution (mannitol). This opens the barrier and allows 10 to 100 times more chemotherapy to enter the brain. A catheter is placed into a large artery (usually the one in the groin called the femoral artery) and threaded up to the carotid or vertebral artery. The hypertonic mannitol is injected, followed by a chemotherapeutic agent. Patients spend a few days in the hospital for each administration. This has been attempted with DIPG tumours.[12]
Convection-enhanced delivery: Chemotherapy is delivered to the tumour by a surgically implanted catheter under a pressure gradient to achieve more distribution than with diffusion alone. Limited experiments have been conducted with brain tumors, including one with a DIPG.[13]
Drug carriers: Carriers such as Trojan horses, liposomes, and nanoparticles might theoretically allow a therapeutic drug to enter the brain. Such tactics are mostly in the investigatory stages and are not yet clinically relevant to brain tumour treatment.[10]