Pippa Rea

Pippa's Journey with a Brain Tumour

Pippa’s Muddy Mud Cakes

Today at the end of what should be Pippa’s 15th birthday I feel I have more questions than ever.  Most of them are wondering and searching for answers that will never be.  Wonder at how Pippa, the 15 year old teenager, would celebrate her birthday?  Wonder at what subjects Pippa, the 15 year old school girl, would have chosen this year?  Wonder at what sports Pippa, the 15 year old athlete, would be playing?  Wonder at what Pippa, the 15 year old young lady, would be like.  How tall would she be?  What clothes would she be wearing?  Would her friends be the same as four years ago or would she have new ones?  Would she have a part time job?  Would she have spent endless summer days at the beach?  Would her hair still be long?

Why??????

Another day and another birthday passes though and I have no answers.  Not a single one.  I know Pippa the 11 year old. Pippa the 15 year old only exists in my imagination with her future never to be told.

Pippa was famous for making chocolate mud cakes on birthdays.  Or for Easter.  Or anytime she thought would be a good time for chocolate mud cake!  She was often asked for our recipe.  So I thought that on her birthday, I would make and share her recipe for chocolate mud cakes – most often topped with a Malteser.

Pippa’s Muddy Mud Cake(s)

250g butter, chopped

250g dark chocolate, chopped

3/4 cup caster sugar

20ml whiskey

1 1/2 cups hot water

1 1/4 cups self raising flour

1/4 cup cocoa powder

2 eggs, lightly beaten

1 tsp vanilla

  • Preheat oven to 160
  • Sift flour and cocoa together
  • Melt butter in a medium saucepan
  • Add chocolate, sugar, whiskey and hot water
  • Stir over low heat until chocolate is just melted and mixture is smooth
  • Gradually beat flour and cocoa into chocolate mixture using a wooden spoon
  • Add eggs and vanilla and beat until well combined
  • Pour into a buttered and lined 24 cm tin (or cup cake patty papers or mini cupcake papers)
  • Bake for approximately 50 mins or until a skewer comes out almost clean (shorter if smaller cakes)
  • Stand in cake tin for 10 mins before turning on a wire rack to cool
  • Ice with chocolate ganache and top with a Malteser!
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Pippa’s Christmas Moon

Tonight I waited long after it was dark wrapped up in towels and a rug after the heat of the day had gone and the only warmth left was from the bluestone against my back still warm from the day’s sun.

As I watched the moon rise over the ocean I thought of my darling girl, how much she loved Christmas and how the ache in my heart is no less than it was last Christmas or the one before that or the one before that.  I thought of the people I now know (and those I don’t) who are also spending Christmas Day without their child.  I also thought of those people spending Christmas Day this year knowing that it will be the last time they will see Christmas joy in the face of their child; knowing that Christmas 2020 will need to be navigated with that same empty chasm in their heart that I have in mine.

So if you wake on Christmas morning and happen to see Pippa’s moon on your phone or computer, please, before the chaos and stress and frenzy of Christmas starts, pause and think of all the families spending Christmas without their child and those putting on a brave face for their child.

Christmas is not joyful for everyone.  For many it is simply cruel.  Pippa’s Moon rising over her seat at Port Fairy Beach is indeed beautiful and worth the long dark wait, but its beauty does not make up for the ache in my heart and the sadness that never ever leaves.

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My neice sent me a message in reply to this pic tonight that said – Pippa, we love you to the moon and back.  It reminded me of what Pippa used to say.  She loved that book, Guess How Much I Love You.  Whenever Pippa had been away from me she would come home sad from having missed me and cuddle up on my lap and I would have to read her that book.  To cheer her up James and Patrick (at a much younger age than they are now) would act out the story creating a lot of laughter from Pippa with their antics – especially when Big Nutbrown Hair would swing Little Nutbrown Hair high above his head!  At the end, Pippa would always say to me, “Mummy, I don’t love you to the moon and back.  I love you to the moon, around all the planets and all the stars, around the universe, back down to earth and around the world…and back!”

 

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What a Little Star

Chips and Trains the greyhound named for and by Pippa yet born nearly 18 months after she passed away is proving himself to be a surprising star.  Our expectations for him were never anything more than to run in Pippa’s memory, with the racing name she had chosen, to create awareness for children’s brain cancer and hopefully raise a little money for research at the same time.

Pippa was so proud of every time she went out to the kennels to help Chris and Linda with the dogs,  especially the pups.  It was her job.  In November 2014, a week before Pippa started needing to use a wheelchair we were at the Royal Children’s Hospital.  She was getting blood tests, choosing a wheelchair (for the inevitable) which she was not happy about at all (until James and Patrick showed her all the fun that wheelchairs could provide) and getting fitted for a radiation mask at Peter Mac for the second time in her short life.

Walking through RCH we saw Ricky Ponting.  Should we go up and say hello and ask for a photo?  Why not?  We could ask him about cricket and tell him about how much Pippa’s Tony enjoyed cricket.  Pippa however had other things she wanted to talk about…  We respectfully approached him and said hello asking him if he would mind having a photo.  Before cricket was even mentioned Pippa happily told Ricky that years earlier she had patted and looked after his dog at Linda’s kennels.  Not exactly the comment he was expecting from a 10 year old girl at all!   We eventually had the mandatory chat about cricket and he also talked about the Ponting Foundation and mentioned how proud he was to support the Murdoch Children’s Research Institute.  Little did I know then that I would now be so closely connected with Murdoch via Pippa’s Trust we hold at the Tumour Tissue Bank. The surprised smile on his face when Pippa told him about looking after his dog was just priceless – it will stay with me as one of our many memories of Pippa!

When Chippa started racing in May Linda sent me a photo of a beautiful drawing that Pippa had done one day to leave in her kennels.  It’s perfect.  It shows the correct layout of everything.  The kennels, the nursery were the pups are born and cared for until they’re old enough to go outside, the house, the van and even the gate that has to be kept closed!  I particularly love the detail of Pippa and Linda drawn there looking after the pups and equally the names of all the pups and their mum.  It must have been one of the first litters she wrote names for I think.

Chips and Trains is now the 2018 WA All Stars Champion and the 2018 WA Young Stars Champion.  I just love watching all his winning races, but I do especially enjoy the All Stars Final – in the Red #1.  he doesn’t give up!

Even though we did not start with any expectations at all, he is first and foremost running to raise awareness in Pippa’s memory.  Brain Cancer kills more children than any other disease.  80% of children will die within 5 years.  90% of survivors are left with lifelong physical and mental impairments.  Children with a DIPG (the type Pippa had) have an average survival of 9 months.  These statistics have not changed in 30 years meaning Pippa did not even have a chance.  The odds were not in her favour at all.   These odds need to change.

Awareness = Money = Research = Better Outcomes = One Day a Cure.

For donations made in Pippa’s memory…

RCD Foundation Brain Cancer Research

Chips and Trains is providing us with a little bit of fun and happiness – we are grateful for this and enjoying his ride!  Pippa would be thrilled that Chippa is such a lovely greyhound and that he is running around under full moons and fireworks winning races in her memory.  She didn’t want anyone to forget her; she was so scared that would happen.  She would love that people who have never met her have now come to know her through Chips and Trains.  She would love that people love him, follow him and cheer him on.  She would love that he’s putting smiles on faces.  She would especially love that Chippa seems exactly like her – a beautiful personality, affectionate and always wanting cuddles, everyone’s friend and a bit of a free spirit with a love for running!

I know that if Pippa were alive she would be ringing Chris and Linda every day making sure someone was cuddling him for her.  What a little star he is with a special pair of angel wings on his back!

Chips and Trains “Chippa”

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Chips and Trains

The story of Pippa, her love of visiting and looking after greyhound pups, a little friend who missed her when she was away for treatment and finally, a dog named by her and racing in her memory…

Best told by someone other than me and thus, as written by Molly Haines here in the latest issue of Greyhound Monthly    of how Chips and Trains (affectionately known as Chippa) came to beChips_and_Trains_Instagram_or_FB_profile_Black

It’d be a bit fun for Chippa to become a well loved dog all around the country and have Pippa remembered through him.  Another way I can keep my heartbreaking promise to Pippa that people won’t forget her.  In the end that was her biggest fear and I can still feel the tears on our faces when she pleaded with me to not let that happen.

He’s got himself an Instagram account (follow @chipsandtrains) and proceeds from his winnings are donated to brain cancer research

Go Chippa” you are bringing us a bit of fun and Pippa would absolutely love you

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Lighting the way

The following article was first published in the Australian Yoga Journal:

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Standing waist deep in water with rain falling on my face I reminded myself that I don’t believe in the phrase “everything happens for a reason”.  I do, however, believe in coincidences, circumstances, opportunities and fate.   That’s how I came to be in Honolulu, Hawaii, on Memorial Day 2016.   It was dark and I was wearing a now completely wet denim skirt and a black t-shirt, my hair was tied up in a pony tail and my bag slung diagonally across my shoulder tucked under my arm to try and avoid it from getting wet too.  Beside me my sons’ t-shirts were also damp from the soft sprinkling of rain and they certainly would have been more suited wearing board shorts in the beach instead of chinos.

A series of events over a twelve-month period resulted in me taking my two teenage sons to participate in the Annual Lantern Floating Ceremony at Ala Moana Beach Park, Honolulu.  The ceremony is an ancient Shinnyo-en Buddhist tradition representing the interconnection of past, present and future and carrying hope toward a peaceful and harmonious world.  Now, approaching its 20th year, Lantern Floating Hawaii themed “Many Rivers, One Ocean,” brings together all religions and sectors remembering loved ones passed.

Arriving at Ala Moana Beach Park in the morning to collect one of the 6,000 lanterns available we were expecting a long wait.  The line snaked through the lush park under the shade of the trees for hundreds and hundreds of metres.  The air was hot and humid and the grass wet from tropical overnight rain.  By the time it started to move at 10.00am the queue behind us was just as long as the one in front – thousands and thousands of people waiting patiently for their lanterns.  The first had arrived to secure their spot at the front of the line at 4am.  Families who make the ceremony an annual ritual had erected tents and marquees all throughout the park and along the beachfront from 3.30am.  One family I spoke to had been coming for 8 years.  They arrived at 2am but weren’t allowed into the park until after 3 to set up their tent.  Initially, they floated in memory of a family member who had passed prior to their first year.  “Now,” they said, “it is a tradition we will never miss.”  They are one of the first to arrive during the night every year and have their tent positioned so that their place naturally joins the queue about 50 metres back.

Music played, the waft of barbecues could be smelt from every part of the line, children ran around coming to and from the beach, people rode bikes or played games.  There were mattresses, beds, picnic rugs, umbrellas, fully equipped camp kitchens, bikes, toys, coolers, beach gear, tables and chairs; all stretching as far as you could see.  Food stalls are not prominent; the tent community bring their own.  All for just one day.  The scene reflected more of a party atmosphere or festival than a memorial ceremony yet everyone was still revered and I felt a sense of peace and calm amongst both those waiting in line and those in their makeshift camps.

The queue moved quickly and collecting and writing on our lantern at 10.45am meant our wait in total was only an hour and a half.  The lanterns are environmentally friendly and refurbished by hundreds of volunteers each year to be reused the following one.  Marquee space is provided to write tributes and memories on the lanterns and many were then personalised further in other ways; mostly adorned with flowers and photographs or wrapped in leis.  We decorated ours with fresh frangipanis and photos.

Arriving back at the beach park later in the afternoon our anticipation was confirmed by the sheer mass of people who migrate to this ceremony.  No less than 50,000 adorned the beach and the park, yet, at the same time, there was no jostling for position or views.  It was apparent that some people liked to position themselves in view of the stage, some in front of the large screens, others in the water and others still stretching as far as the eye could see along the sand and around the curve of the bay.  Behind the stage there were even more people covering the rocky point that framed the southern rim of the cove.  Many people were simply wearing swimsuits, there were fully robed Buddhist Monks and everyone else dressed anywhere in between.  Most were barefoot.  We easily managed to position ourselves on the sand, directly behind the VIP area, in front of both the stage and a screen and with easy access to the shoreline.

The open aired stage, although elaborate in statuesque against the palm trees, was simple; pure white with soft subtle lighting continuously changing to compliment the setting sun.  Dramatic Japanese Taiko Drums were the feature on either side and a large cauldron sat high at the front ready for the ceremonious lighting of the “Harmony Flame”.

The ceremony itself lasted an hour and was a colourful and tranquil display of love, peace and harmony commencing with the haunting sound of the blowing of the conch shell out across the colourful beach where sand was no longer visible and the proverbial pin could have been heard to drop.  The sun dipped below the horizon across the water, it’s golden reflection rippling all the way to the shore.

Conversations with strangers confirmed that everyone was there to celebrate love, memories and remembrance:  the security guard who had lost his baby 14 years earlier; families who had travelled from around the world; the volunteer who had lost every female member of her family to cancer; the woman who was floating for a stranger she had met only very briefly but who couldn’t be there in person.  Lanterns were attributed to aunties, uncles, parents, grand parents and most sadly, children and babies.

As the incredible and moving spectacle of the floating began the rain started to fall.  Not heavy, but enough to make sure we were wet waist up as well as waist down.  Thousands of people waded out into the water without care for their clothing releasing their lanterns. The atmosphere was still revered and peaceful.  Even though we were amongst 50,000 people we could very easily have been on our own.  Gradually the bay filled with golden flickering lights; a breathtaking and heart-rending vision that spread and multiplied across the water as each lantern was released.

I thought to myself before we released ours it’s a shame it’s raining, but even so, it didn’t matter.  We released our lantern and pushed it out to join the others.  I watched it float away holding my boys tight and close.  I turned to see my friend busily taking photos of it drifting off.  Looking back out to the sea of candles I saw our lantern had come back.  I had a little chuckle to myself and pushed it away again.  Off it went and again it returned.  I gave it a harder shove.  Again it came back.  I thought they must all be floating back in, perhaps with the tide?  I looked at the other lanterns.  No, they were all slowly making their way out into the bay.  Ours was the only one that seemed to be going in the other direction.  I laughed and cried at the same time.  That was my daughter, always wanting to be with me; my daughter, my best friend, never leaving my side.  A woman had been watching me continually pushing my lantern out to no avail.  She came over to me and gave me a hug and quietly said to me, “It is tradition to say hello and goodbye to your lantern before you release it.  You must do this to allow it to float away.”  This time our lantern went out to join the others.  I must admit, I was a little sad that it did – I liked the feeling that it wanted to stay with me.

By this time the rain started to ease.  “You know,” the woman said, “in Hawaii rain is seen as a blessing.  It is cleansing and it brings healing, peace, growth and life.  Plus it provides us with the loveliest rainbows!  The fact that it started to rain as the floating of the lanterns began is very spiritual and beautiful.”

I looked at her, this woman I didn’t know who instinctively knew she needed to convey this meaning of rain to me.  Tears welled up more in my eyes and rolled freely down my face.  Before a cruel, inoperable and incurable brainstem tumour took the life of my 11-year-old daughter she had drawn a picture of her heaven.  Sitting on top of clouds her heaven was full of life with stars, music, birds, flowers, water, puppy dogs, bunny rabbits and a big yellow castle where she would live.  A long ladder stretched up to her clouds and underneath them was what I thought was rain.  She had corrected me though.  It wasn’t rain, they were the drops of water that I would feel on my face when she needed me to climb the ladder and visit her.

It was circumstances and opportunity that lead us to participate in the Lantern Floating Ceremony surrounded by so many people united together in emotions and gratitude of those gone before.  It was coincidence and destiny that made the woman approach me and explain about tradition and rain which invoked the memory of my daughter’s heaven and her wanting me to know we could still connect after she was gone.

On the 30th May 2016, 14 months and two days after my daughter passed I was standing fully clothed, waist deep in the tropical Hawaiian beach with drops of water on my face and floating lanterns as far as I could see.

That rain was meant to be.  It was fate.

The Lantern Floating Ceremony is held annually on Memorial Day at Ala Moana Beach Park, Honolulu.  

Anyone is welcome to participate in the lantern floating.  Lanterns are given out from 10am-4pm on the day or until they run out.

There is no cost or charge for floating a lantern.

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Nibbles

Nibbles came to us Christmas 4 years ago…..

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He fixed tummy aches, he joined birthday parties and they shared countless punnets of blueberries.  Pippa used to tell him he had a very fat bottom!

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Since the 28th March 2015 he has provided comfort and love and sometimes has even mistakenly been called Pippa.  He would knock on the door to get let in and without fail he would hop up to Pippa’s bedroom.  Every Single Time!  The first thing he did after she left us was to paw and snif at her bagful of clothes.  We have often found him on her bed, with her teddies, playing with her yellow dancing costume and just sitting or sleeping in her room.  He ate every flower that ever entered the vicinity of our back yard except for Yellow Jonquils planted for Pippa – those he would just sit in amongst and sometimes rub his chin on.  He has been known to sit up at the back of the couch and stare at the photo of him and her on our wall – no kidding!

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This Christmas he hopped into Pippa’s room one last time and went to his favourite sleeping spot beside her bag of clothes and her school bag.  He knew exactly what was happening and precisely where he needed to be.  He went to sleep peacefully, I left a candle on all night and he didn’t wake up.

We buried him in our back yard that he had so much joy in.  He is sleeping forever with a carrot, a flower and 2 photos of Pippa, but he is now hopping, running crazily and laughing forever in Pippa’s beautiful heaven….

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Pippa’s Heaven

Darling Nibbles and Darling Pippa……every single day hurts

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