'Evie, you don’t have to get sick anymore'

Sarah Weir

Evie Weir passed away on December 19, 2017, after a four year battle with Neuroblastoma Cancer. Here her mum Sarah shares a heartfelt tribute to her daughter who touched so many lives around Australia.

"2017 was the hardest year for our family. It was the year we had to say goodbye to our Evie Grace.

However, 2017 gave us our last cuddles, last kisses, our last photos and memories with her.

Starting a new year without Evie has been incredibly hard, as we now navigate our lives without her. She has left a hole in our lives and life just doesn’t quite feel right.

We are learning to walk again, but with a limp. We miss her every second of the day.

Sarah with Evie, who passed away in December. Photo: Supplied
Sarah with Evie, who passed away in December. Photo: Supplied

On the 31st July 2011, our lives were forever changed when our darling Evie entered the world. We instantly fell in love with her. A perfect little doll who was loved and adored by us all.

It wasn’t long before Evie began smiling, showing her famous dimples. She was a very happy little bub, and she was incredibly generous with her smiles. She especially loved smiling at her big sister.

Evie absolutely adored Alicia and they had a special connection right from the start. As they grew older, their friendship only blossomed, and Evie joined the dancing and singing, daily concerts became the norm.

They loved playing teachers together, worked on gymnastics routines, played with dolls, watched shows and movies, and were the best of friends. Evie always looked up to Alicia. It was a joy to watch the two of them together. Their truly special bond will never be broken.

Evie and big sister Alicia had a special bond. Photo: Supplied
Evie and big sister Alicia had a special bond. Photo: Supplied

Evie was a very happy and easy-going toddler. But it was easy to see something wasn’t quite right when Evie first got sick, just before her second birthday.

The one week after turning two, she scored her first ambulance ride to Westmead Hospital for what we thought was going to be a simple bowel procedure.

The following day, on the 7th of August 2013, our lives were completely shattered and turned upside down when we were told Evie had a tumour, which after further tests revealed Evie had stage four neuroblastoma.

Evie was diagnosed with Neuroblastoma in August 2013. Photo: Supplied
Evie was diagnosed with Neuroblastoma in August 2013. Photo: Supplied

Evie battled the disease for four and a half years and her treatment was brutal and relentless.

This is what she endured in her short life:

Six rounds of chemo, causing vomiting, mucositis, and blood counts to drop. Major abdominal surgery, more high-dose chemotherapy, followed by a bone marrow transplant to help her body recover in which she spent five weeks at hospital, including a four-night stay at the intensive care unit.

Evie endured four brain surgeries. Photo: Supplied
Evie endured four brain surgeries. Photo: Supplied

She was unable to eat, had ulcers all throughout her body and remained in isolation for six months after.

She had 12 sessions of radiation to her abdomen, each day having to go under general anaesthetic. She then endured six months of intensive immunotherapy, where she was on morphine to stop nerve pain. She had temperatures, high heart rate and low blood pressure every time she went in for treatment.

After Evie relapsed, she then had brain surgery, eight months of chemotherapy, a second brain surgery, full head and spine radiation, a third brain surgery. All followed by yet another brain surgery just two weeks later when she had an infection and had to get a piece of her skull bone removed.

She had further targeted radiation to her head, lutate treatment, more targeted radiation and finally, four rounds of a trial drug through IV.

Evie had a long strand of courage beads. Photo: Supplied
Evie had a long strand of courage beads. Photo: Supplied

Throughout her treatment, Evie had 45 scans, 24 blood transfusions, over 100 central line dressing changes, 97 needles, 212 nights in hospital and 83 day visits.

Most of this was endured with a smile and little complaints.

Throughout everything, Evie amazed us. From the very first cannula that was put in at Nepean Hospital, the doctor remarked that he had never had such an amazing patient her age whilst putting a cannula in.

Despite all this Evie always had a smile on her face. Photo: Supplied
Despite all this Evie always had a smile on her face. Photo: Supplied

Everyone that met her throughout her treatment, including doctors, nurses, anaesthetists and scan technicians, would remark on how amazing she was. She took everything in her stride and really was the perfect patient. Evie would thank nurses after they gave her a needle.

And then there was steroid Evie…….
A couple of times before and after brain surgeries, Evie had to take steroids. She was known to yell, ‘get me hot doggies!!!!!’and she could down 12 nuggets in the blink of an eye! Snacks were kept under her bed so when she got the munchies at 2am they were there on hand.

Then there was her roid rage. Our sweet, beautiful Evie would suddenly be yelling and was known to throw things across the hospital room. One time in particular, just after brain surgery, she was in a room shared with five other patients. One particular patient was being too noisy for Evie’s liking, and she yelled out “What are you even doing? Shut up, you chunk head!”.

The term “chunk head” has since been used affectionately in our circle of family and friends.

Sarah says Evie never complained about going to hospital. Photo: Supplied
Sarah says Evie never complained about going to hospital. Photo: Supplied

Evie actually quite enjoyed going to hospital. She loved getting her pink milk, having coco pops and hash browns. As soon as we arrive she would ask for her favourite person: her play therapist. She would bring her favourite Strawberry Shortcake toys, colouring in and crafts.

Another activity that began in hospital was nail painting. Captain LaLa from the Starlight Room came to visit and painted Evie’s nails and she then wanted to get this done every time she was in hospital.

It became therapeutic for her. As she got older, she also started painting other people’s nails. Anyone who came to visit her in hospital got their nails painted. Soon people were bringing nail polishes and she became known for her in-hospital nail salon.

She ended up with a huge collection of polishes, nail stickers, and glitters. Every time we see nail polish or paint our nails, we will think of Evie.

People around Australia painted their nails for Evie. Photo: Kids Cancer Project
People around Australia painted their nails for Evie. Photo: Kids Cancer Project

We are so grateful for all the people that were involved in Evie’s care at Westmead Hospital. We felt complete trust with her oncologist, who never gave up.

We are grateful that Evie hardly had to spend any time in Hospital over the last few months, thanks to the palliative care team, and the lovely community outreach nurse, who would come and drop off medications.

We are also forever grateful to Bear Cottage and the staff there. We did not go to Bear Cottage thinking we would not be bringing Evie home, but we were so supported and loved and the staff were just amazing.

We also had wonderful support throughout from The Kids’ Cancer Project and were lucky enough to become part of the family. We will continue to raise funds to support them in finding a cure.

Despite having to miss a lot of kindergarten Evie did so well at school and we are so proud of her. Evie loved going to school, and had the most beautiful classmates who accepted her and loved her unconditionally.

Evie started kindergarten last year but missed a lot of school. Photo: Supplied
Evie started kindergarten last year but missed a lot of school. Photo: Supplied

Whether she was bald, wearing her famous plaits headband, rocking the scarf over her helmet, they just accepted her as she was. She made some beautiful friends and we are so grateful she was able to go to kindergarten.

Evie was very lucky to have the most amazing teacher Ms Allen, who did everything she could to make Evie feel comfortable at school. Evie loved her so much, inviting Ms Allen over for morning tea during the school holidays and even asking her if she could sleep over!

Evie held a special place in her heart for her family. She loved visiting her grandparent’s places, and any chance at playing with her cousins was thoroughly enjoyed.

She loved being thrown into the pool by her uncles, getting her nails painted by her aunties, painting their nails, and cuddling on the lounge. Evie often asked to Facetime those that lived far away, and would go through the list of contacts, trying to facetime whoever would answer.

In her last few weeks, she would often light up when family came to visit. She knew she was incredibly loved and safe with her tribe.

Sarah, dad Josh and sister Alicia are leaning on each other. Photo: Supplied
Sarah, dad Josh and sister Alicia are leaning on each other. Photo: Supplied

One of our most favourite memories as a family would be Evie’s Make-A-Wish. Evie could not swim when she had her central line in, and so she desperately wanted to go on a beach holiday with her family.

Last year her wish was granted, and she swam to her heart’s content on the Sunshine Coast. She also loved the buffet breakfast every morning, and made it clear in no uncertain terms that “this is my make a wish” when she did not want to do a suggested activity!

Evie was so happy that week, and as a family we were all able to enjoy her wish and have a holiday together.

Although most of Evie’s life was tough, we look back and marvel at how happy she was throughout. Her infectious smile often carried us through, and her love for life was inspiring.

Evie endured more than most adults would in a lifetime. Photo: Supplied
Evie endured more than most adults would in a lifetime. Photo: Supplied

Evie was full of love, life and joy, she taught us so much and touched the hearts of anyone that met her. She was so sweet, kind and sharing, but also had a wicked sense of humour and just the right amount of cheekiness.

Her resilience was remarkable and she defied the odds countless times. In one of the beautiful messages of support we received, someone wrote something that sums it up beautifully:

"She accomplished in her short life more than most people in their entire life. She had the power to teach people beautiful life lessons, and was an example to young and old. She touched so many hearts, even strangers. Life is not measured by years, life is measured by how many lives you’ve changed. And in this way, she lived a hundred lives, and she’s still living in every person’s heart she touched."

Evie, what an honour and privilege it was to be your mummy and daddy. You changed not only our lives forever, but the lives of hundreds of people.

You were courageous and brave, and taught us so much. We are so proud of you, our girl. You did everything well and we couldn’t have asked anything more of you.

'What and honour to have been your mummy'. Photo: Supplied
'What and honour to have been your mummy'. Photo: Supplied

We are desperately sorry we couldn’t make you better. We tried. We will miss you every single day. We will miss your cheeky smile, the way you lit up a room as soon as you came in.

We will miss watching you play with your dolls, we will miss your beautiful voice, and don’t know how we will survive without you. But we are so grateful for every second we had with you. Every cuddle, every kiss, everything about you. We would choose you a thousand times over.

We love you, and as your big sister said, "Evie, you don’t have to get sick anymore".

Until we meet again, our beautiful girl."

'Evie you don't have to get sick anymore'. Photo: Supplied
'Evie you don't have to get sick anymore'. Photo: Supplied

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