My 2016 Journey Part One

WOW! What a year! I could leave that there and a lot of people will go “Yep, what a year!” But I won’t. The last blog I did was 2 years ago and so I have a lot to catch up on. There is so much more I want to include here but this is already the longest blog I’ve ever done and I don’t want to bore everyone all at once. I’m also a bit out of practice so please excuse some of the grammar.

The year started well as last Christmas I got a home-brew kit and I have to say, I haven’t made a bad batch yet. Some definitely better than others but none bad. So that was good. Then the first round of school holidays was nice weather and a couple of good fun day trips with the kids, including the beach, Healesville Sanctuary, Sky Deck and the Yarra Valley Chocolaterie and Ice Creamery. Then to plan the next school holidays.

My wife Leia’s mum had retired to the Sunshine Coast in Queensland in 2015 so what a great destination for a budget conscious holiday. Free accommodation only a short walk to the beach. Yeah baby! Leia had gone back to work in 2015 now that our youngest was in school. So we were able to reduce our debts enough to have some spare dollars to book flights. Then tightened the budget so we’d have spending money when we got up there. So the one week holiday, the first family holiday since a weekend in Warnambool 2 years earlier, was sorted. Flights booked in for 23rd June giving the kids 2 days off school before their holidays began. A great escape from a cold Melbourne winter.

May, I started filming the first short film I wrote called NOT YET. It’s about a guy who gets cancer (let’s look at that irony a little later) I gave myself the lead role. We filmed the scenes when I was the healthy guy who get’s the news. Then we were taking 6 months off while I lost weight to come back to play the guy getting treatment. I was getting people to sponsor the weight loss with all money going to The Cancer Council in a project I called TARGET 75. Both of these have been put on hold but not cancelled.

Then June. Awesome night on the 16th. Saw my amazing 12yo daughter Nataliescreen-shot-2016-12-26-at-9-00-32-pm get up in front of about 50-60 parents and friends at the mid year school concert and sing, solo. Very brave. After that I headed out to the launch of the Shaun Miller Foundation. Got to
hang out with Harrison Craig and Rachael Leahcar. Very nice people. Friday 17th, headed to Mornington to have a beer with my brother for his birthday. Everyone was asleep when I got home. Saturday 18th, everyone still asleep when I left for work. I get a phone call from Leia, “One of Hayley’s eye’s has turned in, taking her to the doctors” a bit later an SMS, “Dr said to take he to The Royal Children’s Hospital, heading there now” I knocked off work and headed straight to the emergency department of the hospital where Hayley was sitting up smiling and giving cheekimg_8582 and one eye turned right in. It didn’t seem to cause her too much discomfort, just double vision. They wanted to keep her overnight and do an MRI the next day to see what was going on in there. Sunday they asked for Leia and I to come into the little meeting room for a chat. My stomach churned. They had found something but needed to do more tests to be able to say what. The next few days was a blur of tests, scans, biopsy, fasting, testing, etc. Thursday 23rd June several doctors asked Leia and I to go with them into that little room again. They introduced themselves as the Oncology team that will be looking after Hayley (Ignorant me didn’t realise that oncology doctors means cancer doctors yet) They found a 5cm long tumour called a Rhabdomyosarcoma which means soft tissue tumour. It was filling her nasal cavity. It had a branch growing off it which put pressure on the optic nerve causing the eye to turn in.

Those of you who are very astute will see that one of the dates has been mentioned twice. That’s right, the day we were supposed to be on a plane heading to sunshine, we were sitting a small room being told our 6 year old daughter has cancer. I know in the whole scheme of things that it is insignificant but it did feel like that little bit of extra salt.

Saturday 25th June, chemotherapy starts. The type and stage of the cancer was considered moderate risk but because of location was moved into the high risk category and the started fast and they started strong. To quote the Dr in charge, “We’re coming in with all guns blazing!” Four different chemo’s started to be pumped into her body that day and straight away knocked the shit out of her.img_9087 None of us knew how to explain this to her. “This is to make you better honey.” “But I’m not sick?” We heard that conversation several times. It didn’t take long before she was convinced. Her independence was stripped away. Needing to be carried around, needing help at the toilet, back in nappies, etc. She lost nearly 2kg in two weeks. Now if I was to lose 2kg, no one would even see where it came off but when you start at 19kg it is about 10% off you gone. That can be seen. They installed a feeding tube called a PEG so we could pump food straight into her stomach. Due the treatment causing ulcers in her mouth and another fun thing I learnt called Mucositis (Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. [Wikipedia]).

We have had constant trouble with that bloody PEG. In fact she is onto her 5th one now as it keeps needing to be replaced. A couple of times under general anaesthetic and a couple of times with nothing but me holding her still as she screamed in pain as these people did what they did to replace it. It was cruel and unnecessary pain and when this is over I will be taking that matter further but we still need those people for now.

Four weeks after Hayley was diagnosed, her cousin, my nephew Pat was diagnosed with Stage 4 Lymphoma. During the family visits I found out my little brother had a couple of minor heart attacks and was awaiting heart surgery and then my mother had a stroke and spent the next 6 weeks in hospital getting rehab. They believe everyone has a good chance of full recovery but it will all take time.

At the start of all this we were in hospital more often than not with my wife and I taking it in turns sleeping at the hospital.In fact we worked out in the first 8 weeks we had spent 7 nights at home. More recently we have been spending more time at home so I’m not sure if there have been more hospital nights or her own bed nights for Hayley. I’d like to work it out one day but not now, I’m tired. Leia took time off work, she had no annual leave or sick leave left so she was taking unpaid leave until further notice while we worked out what was going on. She received one of the most insensitive, horrible and heartless phone calls of abuse from her workplace demanding to know what her plans were. She also received a letter from her superannuation company to say that they were closing her account as zero in contributions had been made. This arsehole has not paid any employee super at all, ever. This matter has since been reported to the appropriate people. I’d also like to dob this prick in to a few inappropriate authorities too. Not quite the extra emotional kick in the guts that Leia was looking forward to at the time. She has since sent her letter of resignation. we also learnt that it takes 15 weeks for Centrelink to approve feeding your family during these shit situations.

In the middle of it all there was radiation. 28 rounds over five and a half weeks. So every day except for weekends. Now the chemotherapy got rid of Hayley’s hair very early on but it seemed the eyebrows and eyelashes were unaffected until the radiation started. She complained about things in her eyes and we discovered it was her eyelashes falling out. Then we discovered there was just one eyelash left. img_9514It held on for 3 weeks when I took a photo of it while Hayley slept one night at the hospital. I posted the photo on Facebook. Kidspot saw the photo and wanted to do an article on Hayley. The Daily Mail saw the article and then The Herald Sun. Then I’m getting messages from around the world. “Saw
your little girl in our local paper, sending love from Austria” “Sending love from Mexico”, Italy, Argentina, USA, UK, South Africa, Iraq, Chile and others. It turned very surreal. The crowdfunding page a friend set up to help jumped form $2k to $6k in a couple of days and up over $10k over the next couple of weeks. I was also interviewed online by the Today Show in USA. World wide fame for Hayley, in fact if you Google Hayley Brown Eyelash, nearly everything in the first 3 pages in the search are different articles about that eyelash. It fell out one week after I posted the photo.

lee-in-paper

 

The article was also seen by a legend named Lee Ellis over in the UK who had just finished raising money for a little girl with cancer over there and was looking for his next project so he asked if we could be it. He has even started the new hashtag #aneyelashforhayley and raffled a signed Manchester United guernsey. Even got a picture of himself in his local paper with Hayley on his computer screen. I don’t know how to thank him properly for his efforts.

 

The crowdfunding thing has become a bit of a sore point too at the moment. Due to the international awareness, the page hit $12k at one stage but sadly there are a lot of Robin Hood wannabes who were using other people’s cards to make donations and now, not only is it back down to less than $9.5k we are being asked to pay back nearly $2k that was already been forwarded to us. I’m not sure how we are going to do that.

We have been overwhelmed by the support we have received from so many directions. This blog is long enough so I’ll compile a full list in a future blog. But there are things that I just can’t get my head around. I really don’t mean to sound ungrateful and this isn’t sour grapes, it’s just a comparison.

Earlier this year a guy in the audience asked a question on the tv show Q & A. He said he was a minimum wage earner (like about 75% of Australia’s population) and a tax cut would allow him to take his daughter to the movies. The response from the politician was a bit heartless and between the 2 of them made the polly look like an arsehole. The far left got behind this guy and posted all this stuff about this hero who heroically spoke on tv. The far right right dug up all the dirt on this guy and his family and background to discredit him in every way they could. This just fuelled the left who started up a crowd funding page to help this heroic, struggling guy. In a very short space of time the Australian public raised over $60k. I have nothing against this guy but there was nothing heroic about anything he did. He also didn’t deserve his past to be on the front page of the newspaper. And he definitely didn’t deserve $60k for asking a question. That was just Australia. But a 7 year old with one eyelash with international attention reached $12k and $2k of that has to be paid back. Not one cent offered by any of the people happy to run the story including a new article that has received more than half a million views which means they are making plenty of revenue from it. Sorry if that sounded a bit mercenary but it’s been a shit year and although I may not be on the minimum hourly rate, I only work 5 days a fortnight so does that make me a hero too? I have also put my acting, stand up comedy and promoting careers on hold so eliminating any extra potential income while Leia is now receiving less than half what she was on while working. If not for the generosity of others we would be so far up the creek without a paddle by now.

If you want to know what I find heroic,
look at my nephew Pat. Just turned 22 less than 2 weeks ago. Loves his girlfriend’s pat-and-boyschildren like they are his own and looks after them as such. Is more worried about how his cancer is affecting them more than it is himself. Apologised for taking away any of Hayley’s thunder by getting cancer too (I think he was joking). The crowdfunding page for him can’t even reach $1k. From where he lives compared to where his treatment is, it’s not even covering petrol yet. He is getting less than minimum wage because he can’t work at the moment. Getting cancer doesn’t drop the expenses, it increases them, while you get less to cover them. Rent, electricity, petrol, food, gas, phone, etc, etc, etc. If you can help Pat, please go here:- https://www.mycause.com.au/page/142265/paying-it-forward-4-pat

img_9454Every year more than 800 kids are diagnosed with cancer. Hayley has received so much attention lately. Does Hayley deserve any more attention than any of the others, no. Does Hayley deserve any less attention than she has been getting, HELL NO! Every one of these kids dealing with this crap deserve everything wonderful that comes there way and it still won’t be enough. Please support The Royal Children’s Hospital, The Starlight Foundation, The Children’s Cancer Foundation, Make-A-Wish, Nick’s Wish, Red Kite, Camp Quality, My Room, Koala Kids, CanTeen, Challenge and everyone else who does what they can to help the families going through these times.

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