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DIPG, Elyse Defying the odds.

So far, Elyse has beaten the odds and is nearly 5 years old, she is also on the largest dose of a 1:1 strength product of any patient in NZ.

Article by Casey Johnson, Mother to Elyse.

Our daughter Elyse who is now four years old, was diagnosed with a rare and aggressive brain tumour called diffuse intrinsic pontine glioma (DIPG) on April 9th 2016 just over 2 years old.

This tumor has a very low survival rate with less than 1% of its victims beating the odds. It predominantly affects children and most pass away within 3-9 months from diagnosis. It’s’ aggressive and evil. Some of the symptoms are lack of facial control, droopy eyelids, double vision, headaches, vomiting and fatigue seizures, balance problems and numbness of the face.

Within the first six months from diagnosis Elyse had already lost the ability to talk, walk and eat with the sheer aggressiveness of the tumor growth but even with all of these symptoms, she is still fully aware and mentally there.

Initially, we were sent home with just weeks to months for our daughter to live with the sole treatment being radiation. We decided against radiation as it only takes the symptoms away for a limited amount of time and the tumor begins to grow again within months.

Because Elyse was to have no radiation treatment, the oncologist gave her a shorter survival time frame of just 3 months from diagnosis.

Once we were home making the most of our time we started researching and following other stories overseas and came across medicinal cannabis and some other natural treatments.

Despite 40 years of progress on most cancers, DIPG remains stubbornly fatal, with less than 1% of patients surviving to the 5 year mark.

 

We applied to the Minister of Health for Elyse to start on Sativex (medicinal cannabis) in November 2016 and thankfully were accepted but at a huge cost. Every 7 days it cost $600 to keep her on the medication that’s $31,200 a year $2,600 a month. She is now on the new brand Tilray which is imported from Canada. Just before she started the cannabis oil she was going downhill fast, we even celebrated her 3rd birthday early but then all of a sudden she seemed to improve more and more and now its almost her 5th birthday.

Elyse has just had her third MRI scan at Starship hospital in a row which has shown a reduction of the tumor. The doctors are stunned and have told us to “keep doing what we’re doing” and have booked Elyse in for a follow-up scan in October 18. This is without a doubt a direct result of the alternative medicines she is being treated with. “I don’t think this has ever happened before without radiation…they don’t just shrink by themselves”.

Just the other day Child Cancer Foundation (CCF) came to see us, they made the point that times are

With virtually 0 chance of survival, the family have resolved to log the progression of disease against alternative treatments, with a glimmer of hope in recent scans as the tumor shrinks slightly.

changing with how medicinal cannabis is perceived both in the medical industry and in the public eye. Everyone around us and following her on social media can see how much she is improving. CCF made a strong point of reaching out to the community and higher ups getting help. This is a medicine that treats the problem and doesn’t just mask the symptoms, and it should be free or at least subsidized! Elyse is now trying to eat again, going back to kindy and is being fitted for a standing frame. Her pediatrician has even moved her to her regular patient list and doesn’t feel she needs to have regular check-ups because of how well she is doing.

 

Our fight is not over yet. Elyse still has a long way to go and she is still classed as terminally ill because of her Diagnosis – DIPG, but we are treatingher as disabled and focusing on her needs while she shows so much improvement. we know this medicine is working.!

https://www.facebook.com/SupportingElyse/

https://givealittle.co.nz/cause/supporting-elyse

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