Beyond the Tumor: Elyse vs. DIPG

DIPG is a wretched illness that takes children away from their families too quickly. Unlike many other cancers, chemotherapy and radiation often merely prolong life rather than save it. However, one little girl and her family in New Zealand took a different approach.

Elyse Johnson is a sweet, loving little girl who was brought into the world as a happy, healthy baby. However, on April 9th, 2016 her family’s lives changed entirely. Several months back Elyse’s mother, Casey, started to notice some changes in her health. She wasn’t walking and talking as she normally would. Instead, she was screaming in the car, vomiting randomly, and even having night terrors. After 5 months of doctor’s visits, there was still no definitive answer on what was happening to Elyse until a pediatrician finally requested an MRI. “Your daughter has a brain tumor called Diffuse Intrinsic Pontine Glioma,” the doctor said, “and she has a few weeks to a few months to live.” Casey and her husband were devastated by the news but they knew that they didn’t want their daughter to spend her last few months in a hospital. So, though they were offered radiation options, they chose to go home and make memories with Elyse, who was just 2 years old, while they still had the time.

When they returned home, they almost immediately started looking at natural treatments to help shrink the tumor. First, they looked into ways to help boost Elyse’s immune system. Then, they did a hair follicle test to reveal even the slightest food intolerance that Elyse had. After eliminating those foods, they began to research organic foods, herbs, and essential oils with naturally occurring cancer-fighting properties. Eventually, after thorough research, they came up with Elyse’s treatment plan. The first three medicines that Elyse was introduced to were TBL-12, frankincense essential oil, and 2000 mg of Vitamin C. Soon, the tumor’s growth rate had started to subside, however Elyse had already lost key abilities such as eating and walking. This led to research of medicinal cannabis and its cancer-fighting properties.

Casey and her husband decided to apply to the Ministry of Health to try and obtain a medicinal cannabis oil called Sativex for Elyse. After a lengthy process and seemingly never-ending paperwork, in November 2016, Elyse was finally approved to receive Sativex for the palliative “management” of her DIPG. They slowly built up Elyse’s dose of Sativex over the next 6 months, but her tumor continued to grow and by July 2017 they were told Elyse only had weeks left to live. That’s when they started giving her an organic food called Liquid Hope, lypo turmeric, more essential oils, increased her cannabis dose, and also shifted to a higher quality medicinal cannabis oil called Tilray. The expenses for all of these treatments cost Elyse’s family an astronomical amount of money, coming out to about $450 a week. But it was all worth it because over the next 2 years, Elyse’s tumor shrunk by 15%.

Elyse, now 6 years old, is proving everyone wrong and beating the odds that were stacked against her. Her journey is absolutely incredible, but it hasn’t been without its ups and downs. “It’s been very hard, lots of hospital stays and surgeries,” said Elyse’s mom, Casey Johnson, “[but] she’s so determined and fights so hard.” Elyse’s most recent surgery was intended to help with her movement by assisting her physiotherapy and rehabilitation. Despite these hardships, Elyse is as cheerful as ever and her bright, uplifting spirit gives those around her, especially her mother Casey, so much hope for the future.

Elyse’s family was thrown in the deep end of things. “I really knew nothing about brain cancer till Elyse got diagnosed,” Casey Johnson said. DIPG is something no child or family should have to endure, but there are lots of ways to help support families such as Elyse’s through this horrific illness. One of the best ways to support those facing DIPG is to “not treat them any differently than normal,” Casey says. Building a support system is also key, and the compassion of friends and family can be incredibly helpful during trying times.

A DIPG diagnosis is an absolute nightmare, but Elyse is fighting hard all while being her happy, loving self. Elyse’s story is inspirational and gives the DIPG community hope that this illness can be defeated.

To learn more about Elyse’s journey or to donate and help fund Elyse’s treatment, click the link below.

Supporting Elyse vs DIPG website

Supporting Elyse vs DIPG Facebook

Supporting Elyse vs DIPG Donations

By Mahi Kovvuru

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