Evie’s Army.

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Evie’s Army.

After a very full on couple of weeks, we are currently enjoying a whole two week break from all things hospital! The past 11 months we have had to go to Westmead at least once a week, so you can imagine our excitement at not having to go in for two weeks! We have been able to catch up with family and friends, bake, relax in the winter sun, and even plant a little veggie patch in the backyard! Evie has completed two rounds of Immunotherapy, and we have three more rounds to go where we will be in hospital, and one final round where she will take oral medicine at home. Not looking forward to going in for the next round, as they are so full on, but we are slowly getting closer and closer to her finishing treatment!

Round two of Immunotherapy was slightly different to the first round. It began with a different drug called IL-2, which continuously ran for four days. We were admitted overnight to see how she would react, and not even 24 hours later we were headed home with a small box in a pouch, to finish the rest at home. Evie was very unsure about going home without being ‘hooked off’, as normally we have to wait till they cap her off before going home. She also wasn’t too keen on carrying the pouch around, but her little cousin lent her the perfect sized backpack, and it wasn’t long before she was accustomed to playing with the backpack on. Once it finished running we headed into Westmead to have it disconnected, then had one day break before we had to go back in for the rest of round two, which was four more days of IL-2 and MAB at the same time.

The first day of week 2 went quite smoothly, as she didn’t experience the agonising pain she did with the first round. She slept a lot of the day, as they have to give her quite a lot of meds and pain relief that cause drowsiness. The second day she struggled with very high temperatures and a very high heart rate. Due to hospital protocol, they were having to call the rapid response team quite a lot, as they couldn’t get her heart rate down, and in the end ICU decided it would be better to take her up so they could monitor her up there. She was puffy with excess fluid, very hot and really unwell. I knew we just had to get through a few more days, but when you are in the thick of it, it seems never-ending. You are always on edge. We were in ICU one night, as they decided she was better off to be on the Oncology ward while having MAB, as the nurses are experienced with administering it and what to expect . I felt much more comfortable to be back on the ward, but in order for her to go down, they had to widen her rapid response number for heart rate.

The last two days were much the same. High heart rate, temperatures, drop in blood pressure, excess fluid of almost 2kg, plus she also had coughing fits from an allergic reaction to the MAB. Three out of the four days the MAB had to be stopped at some point, as she was struggling with the coughing and they worry about it becoming an anaphylactic reaction. She was given antihistamines and the MAB was resumed at half rate once she had settled down. Scary stuff!

It was one of the hardest weeks,but we got through it. In amongst all the craziness, there was a day which will forever be a highlight for me. Evie finished MAB on the Friday, and on the Sunday I was honoured to stand with an amazing group of people who had gathered together in support of Evie at Run2Cure Neuroblastoma. Neuroblastoma Australia was started by a Mum who lost her daughter to the awful disease, and she wanted to make a difference for other children. Here are some facts:

1. Neuroblastoma is the third most common childhood cancer.
2. It is the highest cause of death from cancer in children five and under.
3. The survival rate is currently 50%, with that going down drastically if the child relapses.

When Evie was first diagnosed, part of my coping mechanism was to shut off from all these facts and figures. I didn’t look up any websites, or ask what the chances of survival were. I heard the 50% survival rate said at some point, but I didn’t allow myself to go there at all. All I could do was focus on getting Evie better. When it’s your child who is facing life and death, those figures don’t mean anything. It’s all or nothing. 100%. They either survive, or they don’t, and you have to believe they are going to survive!!! That’s why it was wonderful to be part of a fundraiser that will go towards giving children a better chance, to fund trials and try and find a cure for this disease that takes so many young children’s lives.

‘Evie’s Army’ started as my family creating a team to participate in the fun run. We thought we would get a few people sponsoring us, but were blown away by the amount of support. In the end, we were an Army of over 70 adults and 24 children there participating on the day, and hundreds of people who sponsored our team. There were representatives in the 10km, 5km and ‘Little’Heroes’ walk and we managed to raise a total of $20,339! Just incredible! I am incredibly proud and so grateful to all the people who got on board. I felt so emotional from the moment I woke up on the morning of the run, partly because Evie could not be there with us, and partly because I was so overwhelmed by the support. As Josh, Alicia and I walked around that 1km track, the three of us hand-in-hand, I felt we were making a stand together. A stand against neuroblastoma, a stand against what had tried to rip our family apart. We were standing in the gap for our Evie, and I pictured her holding my hand as she walked with us next year. As I glanced around and saw friends, family, people both Josh and I had gone to school with, friends of friends and Evie’s little friends walking with us, and past students I had taught, it brought tears to my eyes. It reminded me that we are not in this alone. We really do have an army of people who are praying, supporting, cheering us on and walking this journey with us. Thank you, Evie’s Army. xx

 

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Evie's Army, 10km team

Evie’s Army, 10km team

Evie's Army, 5km team

Evie’s Army, 5km team

Evie's Army, Little Heroes Team

Evie’s Army, Little Heroes Team

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Warming up

Warming up

Cheering people at the finish line

Cheering people at the finish line

Daddy running

Daddy running

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Lifelong friends doing life together through good times and bad.

Lifelong friends doing life together through good times and bad.

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Our 'Little Heroes' in their capes

Our ‘Little Heroes’ in their capes

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Walking for our Little Hero, Evie

Walking for our Little Hero, Evie

Our very own Hero with her cape and medal

Our very own Hero with her cape and medal

In for IL-2

In for IL-2

Home with the backpack

Home with the backpack

Heading in the night before MAB started

Heading in the night before MAB started

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Enjoying some time at home together

Enjoying some time at home together

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Sarah
Sarah
A little vulnerable and apprehensive, this is my journey. I hope that it will encourage, help, inspire others, especially who find themselves in a similar situation, or going through a difficult circumstance, and also to share a little glimpse of our story with so many who have been praying for Evie.
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Comments
  • Chris Corrigan
    Reply

    Love and prayers for your family and beautiful Evie xx

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