The Fight of Our Lives

The Story of Elyse Johnson

Written by Casey Johnson and Victoria Beacock
Edited by Shannon Kinzett

When most people think of a two year old girl, they imagine a bright eyed tamariki who’s finding their voice and who takes every opportunity to jump in the puddles on a rainy day. Most imagine the parents nurturing their little girl as she discovers her personality and watching her finally grow into those hand me downs from the next door neighbour. The ‘terrible twos’ are a time for tantrums in the supermarket, but more importantly a period of parenthood bursting with new experiences, gratitude and excitement.

For two year old Elyse and her whānau, this phase of childhood looked extremely different and instead included a deadly brain tumour diagnosis, lengthy hospital visits, ‘Do Not Resuscitate’ letters and thousands of dollars spent on non-government funded medicines.

This is Elyse’s story, as told by her mum, Casey Johnson.

Elyse, my youngest, was brought in to this world a blossoming, healthy baby, a little sister to our son Blake. However in November 2015, when Elyse was two years old, 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, in the supermarket trolleys and during bath time. Then her big toes started to point up and she was having night terrors.

What could be causing this? As any concerned parent would, we took our girl to the doctor and after three different doctor surgeries in five months, we were still left with no answers. We had been told so many different probable causes - that she had reflux, eye or ear problems, hip problems - but every test kept coming back normal.

We had finally been able to make an appointment with a paediatrician in the late afternoon of 6th April 2016, the day before our lives would change forever. I remember driving down the windy hills, Elyse was screaming around every turn and I was wondering what on earth was happening to her. It’s hard enough communicating emotions with a two year old but when they are behaving in a way that not even doctors could put their finger on at this point, it was even more worrying and relentless as a parent.

After we sat down with the doctor and talked about all of her symptoms, I knew something was seriously wrong. They wanted us to go that night to Rotorua for an 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 minutes to complete. An hour and a half later, the radiologist walked into the room and my sister and I both instantly knew something was wrong.

In a split second, my life had suddenly turned into one of those tear jerking movies and I was the main character. I was in total shock and experiencing that exact scene where I’d usually think in my head “imagine if that happened to me or someone I love?”

The moment my heart split into two was watching that doctor look me in the eye and tell me they had found a very large and aggressive mass in my baby girl’s 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 that they would be able to operate the next day. Although the thought of that was terrifying, there was still worse news to come.

The following day we were taken to the quiet room. At this point, I couldn’t picture what worse news there could be. 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 palliative radiation to buy some time.”

After the tears and the questions, my husband had disappeared down the corridor and 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 my daughter.

We had to go back to the room and try to process the devastating news we had just been told. It felt like in the space of 24 hours, I’d gone from assuming the next things I’d be teaching Elyse as she grew up would be counting to 10 and how to tie her shoe laces, to now explaining why she has to spend so much time in a hospital room, plugged into beeping machines and that she’s probably about to die.

So a little more on DIPG, the diagnosis Elyse was given. Put bluntly, it’s one of the worst types of cancer. It mainly effects children and practically has a 0% survival rate. The median time of survival after diagnosis is 3 to 9 months with radiation treatment. It starts by slowly taking away functions such as swallowing and movement, and then gradually shuts down the body. It’s the most horrible way to die, and while this is happening the child, in this case my two year old daughter, is fully aware of everything happening around them. It’s so cruel.

Although we had been offered radiation treatment and been suggested to look into medical 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 to make the most of the special time we had left with Elyse was ticking.

Once we were home we were inundated with people – countless meetings with doctors, support workers, etc. We had visitors every day for three 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. People would ask me if I was okay and how I was managing to hold up, but in all honesty, I don’t think I was. Who would be?

We began 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 and others close to us fighting a cancer battle of their own, 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 natural ways to help boost Elyse’s immune system to help her fight the tumour. We did 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 to.

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. It felt productive putting all of the hurt and worry into action for Elyse. I think this helped me understand and process what was ahead for our family.

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, or sea cucumber). Elyse started this medicine three months after she was diagnosed. We then introduced the frankincense essential oil and 2000mg of vitamin C.

By October 2016 the tumour’s rate of growth had taken off. Elyse had rapidly lost the ability to eat, talk and walk, and was trapped in her own body. It was so heart breaking watching the juxtaposition of our daughter losing coordination and abilities while other children of her age that we knew were progressing and growing so fast. We realised very quickly that the only way we’d be able to get through this is to not compare Elyse’s journey to anyone else and to just eat the elephant in front of us one bite at a time.

“This photo of Elyse holding a balloon was for her 3rd birthday. We thought it would be her last she held onto that balloon all day and all night. That day we held a big balloon release to hope for the best.” ~ Casey Johnson

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 Elyse’s DIPG.

Elyse was the youngest person at the time in NZ to receive the prescription medicine. We slowly built her dose up over the next six months. Her tumour continued to grow and by July 2017 it was well over 6cm. 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.

This cost us close to $450 a week but it has been worth every cent. Over the past 5 years her tumour has been shrinking at a steady rate and has now shrunk a whopping 50% from its biggest measurements!

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 had shrunk by such a huge amount was the best news I’d 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 DIPG’s shrink after radiation, and even then they always 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 they are fighting this tumour.

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

Our family are ever so grateful to have had such a wonderful support system from near and far over the last six 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 two 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.

Elyse’s sassy sense of humour always has us in tears of laughter and her determination and strong concentration is overwhelmingly inspirational. 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 and it takes a big toll on all of the whānau. 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 and more frequently like you wouldn’t believe. She goes to school full time, RDA, swimming and StarJam. She loves to be involved as much as possible and has gained back function such as eating, swallowing, motor function and driving her own electric wheelchair. And here I was assuming I wouldn’t have to worry about teaching my little girl to drive until she was 16!

Elyse’s brain tumour brings us many challenges. Over the years, we’ve battled the mental and physical costs of keeping her alive, but raising the finances to buy these truly lifesaving medicines, because they are not government funded, has been the biggest pain of all.

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 of her diagnosis.

Elyse will be celebrating her 9th birthday in December 2022. And hopefully many, many more to come.