Home / Patient Stories / DIPG, Elyse Defying the odds, nearly 4 years and going strong.

DIPG, Elyse Defying the odds, nearly 4 years and going strong.

Article by Casey Johnson, Mother to Elyse, a follow up to this earlier post from 2018

Hi my name is Casey. I’m a wife and mother to two children, Blake 9yrs and Elyse 6yrs.

We had a perfect life that was soon to be shattered. I’ll tell you a bit about our story.

The past 3 years 8 months have proven to be some of the hardest yet greatest and most rewarding moments of my life.

Elyse, my youngest was brought in to this world a happy and healthy baby, but around November 2015 we started to notice some slight changes in her health. Her walking and speech had come to a halt, she was vomiting randomly once a week, screaming in the car, supermarket trolleys and bath, then her big toes started to point up and she was having night terrors. We had no idea what could be causing this?

After numerous trips to 3 different doctors surgeries over a 5 month period we still had no answers. We had been told so many different probable causes; she had reflux, eye or ears problems, hip problems but everything kept coming back normal and we had no answers.

 

On the 6th of April 2016, the day before our lives would change, we had finally been able to make an appointment with a paediatrician late in the afternoon. I remember driving down the windy hills, Elyse was screaming around every turn and I was wondering what on earth was happening to her. After we sat down and talked about all of her symptoms, I knew something was seriously wrong. They wanted us to go that night to Rotorua for a MRI but we decided it would be best to go the following morning. I brought my sister with me so she could keep me company and thank goodness I did. We arrived and I remember being so nervous as Elyse went under the anaesthesia. They said the MRI would take approximately 40 mins to complete. An hour an half later, the radiologist walk past to the room and we both instantly knew something was wrong. Now I’m holding back the tears as I write this because it’s a day I will never ever forget! The moment my heart split into two. They had found a very large, and aggressive mass in her brain that measured 4cm by 4cm.  At that moment, time seemed to stand still, every family member we told was in shock and we had no idea what the future would hold. We had no explanation at that point in time and the doctors were arranging an emergency flight to Auckland Starship Children’s Hospital.

 

We arrived at Auckland, Starship Children’s Hospital later that afternoon and Elyse was put straight on steroids and pain relief. When she was settled the doctor came to talk to us.

I was telling myself that everything would be okay and they would be able to operate the next day. Even the thought of that was terrifying but there was still worse news to come.

 

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

The following day we were taken to the quiet room, I had no idea about the news to come. The doctor said your daughter has a brain tumour called diffuse intrinsic pontine glioma (DIPG) and she has weeks to months to live and there’s nothing we can do except offer radiation to buy some time. After the tears and the questions my husband had disappeared down the corridor, I ran to the toilet to vomit from the horror I had just been told, I wanted to run away, scream, cry, I went into some sort of shock but had to try and pull myself together for her. We had to go back to the room and try to process the devastating news we had just been told.Despite 40 years of progress on most cancers, DIPG remains stubbornly fatal, with less than 1% of patients surviving to the 5 year mark.

 

DIPG is one of the worst types of cancer. It mainly affects children and has a  0% survival rate. The median time of survival after diagnoses is 3 to 9 months with radiation treatment. It starts by slowly taking away functions such as swallowing, movement and then slowly shuts down the body. It’s the most horrible way to die, and while this is happening the child is fully aware of everything happening around them, it’s so cruel.

Although we had been offered radiation treatment and the suggestion to look into trials, we decided we would rather quality time over quantity and were discharged a few days later to go home and make memories. Elyse was written out a DNR (Do Not Resuscitate order) and the clock was ticking.

Once we were home we were inundated with people, doctors, meetings, support workers etc. We had visitors every day for 3 months straight. Looking back I don’t believe I had time to properly process anything. I just had to put my brave face on and do everything in my power to keep my daughter alive.

Shortly after we came home, with what we thought was just months left, we started looking into natural therapies that could potentially help her fight the tumour. There had to be something that could help. Surely this wasn’t how Elyse’s story would end.

We heard of a few natural treatments being used by other children with DIPG or people who we knew of who were also fighting cancer so we researched and started Elyse on the alternative medicines. One of my good friends Victoria who has been there since day one started looking into ways to help boost Elyse’s immune system naturally to help her fight the tumour. Simple things like a hair follicle test which would reveal the even the slightest food intolerance that Elyse had. This way we could eliminate the foods she was intolerant too. We also researched organic foods, herbs and essential oils with naturally occurring cancer-fighting properties. The list went on and on, we spent countless hours researching everything possible to help her fight this tumour. After setting up a few fundraisers and reaching out the newspapers to ask for help we were soon in a position to be able to purchase all of these alternative medicines and begin our treatment plan for Elyse.

 

One of the first medicines we started using was called TBL-12 (bêche-de-mer sea cucumber). Elyse started this medicine 3 months after she was diagnosed. We then introduced the frankincense essential oil and 2000mg of vitamin c.

By October 2016 the rate of the tumour growth had subsided but Elyse had already lost the ability to eat, talk and walk and was trapped in her body.

After countless hours of research on medicinal cannabis and its cancer-fighting properties, we decided to apply to the ministry of health to obtain the medicinal cannabis oil called Sativex by prescription for Elyse. This was a lengthy process with lots of hurdles, paper signing and waiting. Sativex was finally approved in November 2016 to assist with the palliative “management” of Elyses DIPG.

Elyse was the youngest person at the time in NZ to receive this medicine. We slowly built her dose up over the next 6 months, her tumour continued to grow it was well over 6cm and by July 2017 and we were told Elyse only had weeks left to live.

We then started her on an organic food called Liquid Hope and added lypo turmeric, more essential oils and other natural medicines, we also increased her cannabis dose and changed to a higher quality medicinal cannabis oil called Tilray THC10:CBD10. This cost us close to $450 a week but it has been worth every cent.  Over the past 2 years, her tumour has been shrinking at a steady rate and has now shrunk a whopping 15%!

at 5 years old, Elyse is on 7ml of Oil a day, over twice the typical adult daily dose.

This has been the hardest longest battle I’ve faced as a parent but with Elyse’s sheer determination (Some would say her stubbornness and sass) and keeping up with the medicines, hearing that it has shrunk by such a huge amount was the best news I’ve received in a long time!

DIPG tumours do not just shrink by themselves! Of all of the research around the world, we have only seen DPIG’s shrink after radiation and then they grow back with a vengeance and that is the end of the process. We have found a balance of natural alternative medicines that are working for Elyse and it is fighting this tumour.

 

Elyse has had countless surgeries since she was diagnosed with DIPG to help ease her symptoms and the most recent surgeries to assist her physiotherapy and rehabilitation to move again.

 

Our family have been ever so grateful to have such a wonderful support system from near and far over the last 4 years. Elyse’s medicinal and medical aid costs have added up to almost $250,000. The fundraisers and donations received have helped immensely bringing in almost $180,000

Without the generosity from everyone, we wouldn’t be in the position we are today. Without a doubt. Elyse is beating the odds that were stacked against her when she was just 2 ½ years Old. She is proving everyone wrong and her doctors are astounded with her progress. I have no words to describe how proud I am of her.

Defying the odds for 3 years, Elyse is now able to attend school, with some symptoms lessened in severity.

 

Elyse’s sassy sense of humour always has us in fits of laughter and her determination and strong concentration is overwhelming. Her big brother Blake has also had a lot to deal with. It can’t be easy for him to express his feelings but he is very independent and loves his sister so much. It’s always really hard being away from Blake when we have long hospital stays. It takes a big toll on us all. Elyse and Blake are very fortunate to be surrounded by a huge network of awesome grandparents, friends and family that help out in any way possible.

 

Elyse is reaching new milestones more and more frequently now. She goes to kindy three times a week and is about to start school in February 2020!

 

It cost about $2,000 a month to keep her on this balanced dosage of alternative medicines that are shrinking the tumour. We are relying on the continued generosity of kiwis to help fund this alternative treatment plan that is shrinking the DIPG tumour that doctors said would kill her within months from diagnosis.

 

Elyse will be celebrating her 6th birthday next month. And hopefully many, many more.

Top