Pippa Rea

Pippa's Journey with a Brain Tumour

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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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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Blooms of Yellow

It is so beautiful to see Pippa’s Pots bursting into yellow blooms!  The boys and I love receiving all the photos that everyone is sending us.  All the same but all so different with   many reminding us of Pippa’s long legs.  Some are indoors, some outside.  Some bloomed early and some are still waiting.  Some pots even bloomed on special significant days.  It truly is beautiful.  And for us it is comforting that these pots are bringing smiles to everyone – smiles for Pippa.

The bulbs in front of our house that Pippa planted in 2012 have been blooming continuously – each single bulb is now a large clump of many bulbs.  They have been able to provide us with vases of yellow jonquils inside the house and beside Pippa’s bed every week since they started to bloom.  The bulbs in the Pippa Pots will multiply meaning that each autumn they can be dug up and moved to a garden bed whilst still leaving one in the pot.

 

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The bulbs Pippa planted in 2012 – each clump starting from one bulb

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So many beautiful blooms

The most incredible story that is happening for us though is Nibbles.  Nibbles likes to bolt lightening fast into the house the minute the door is open and he then casually hops up to Pippa’s bedroom where he sniffs around and just hangs out until he’s ready to hop back out to the garden.  I even had to unzip a bag of her clothes that was under her bed because he would just sit there and paw at them.  Anyone who witnesses him doing this is pretty much left speechless.

However, as far as the jonquils are concerned Nibbles’ actions are just as spine chilling. When we first got Nibbles it was very apparent we could not grow anything – herbs, veggies, flower pots, even our chilli plant were all (“Nibbled”) eaten.  Flowers we have been sent all go to the back yard for Nibbles to enjoy between the house and the green bin. He’s not fussy, he eats them all leaving just the stalks.  In fact, Nibbles has even received his own delivery of flowers to happily nibble on!

When we were doing the pots up James wanted to plant some bulbs in a patch of dirt that Nibbles liked to roll around in…..none of us were too hopeful that they would get past the sprouting stage.  One day I saw Nibbles in the dirt with the green shoots certain he was eating them.  On closer investigation James reported that no, Nibbles was only scratching his neck on them.  Pippa used to pat him on his face and under his neck and he would go to sleep while she did it.

Incredibly Nibbles has left these flowers to bloom tall doing nothing more than sitting next to them.  Patrick once asked that perhaps if we became buddhist would Pippa be able to be reincarnated as Nibbles when she died?  We didn’t need to convert, but we all feel that Pippa is very much in Nibbles.

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A New School Year

I guess milestones, particularly those in the first 12 months, are going mean that I will inevitably get asked the same question over and over again.  That’s OK.  I know that it means people care.  I’ve come to understand that and instead of twisting and churning inside I simply answer the best I can at the time.  It’s still hard and I understand that it’s just as hard for other people to speak to me because I know they don’t know what to say and are scared of saying the wrong thing.  That’s OK too.  I don’t mind.  The best thing to say is to actually say something about Pippa.  Knowing that others do not forget her and also have fond memories is the best comfort I can receive.

How did I manage the Christmas and New Year period?  Well, yes, it was difficult.  We ran away to WA to my sister, brother-in-law and adult nieces.   That was the right place to be.  In fact, Christmas Day was manageable.  Of course there were tears and a lot of them.  In fact, at one point I looked around and the whole lot of us were crying.  I had prepared and strategised in the lead up and I think that helped get through what was a very difficult day.  Pippa loved Christmas.  She always methodically wrote Christmas cards.  She was chief present wrapper and decorator.  Just like any little girl.  She especially loved it when Christmas was at our house.  Boy did she have James and Patrick organised!

What I wasn’t prepared for though was halfway between Christmas and New Year.  That’s when it really hit me.  I’d managed Christmas Day but then what?  A new year was on it’s way and I would be starting it without Pippa.  With one less person in our family.  What did I have to look forward to?  What did I have to celebrate?  Neither an old year passed nor a new year coming.  You see, I didn’t want 2015 to end because it was the last year I was ever going to have a living memory of Pippa.  2016 or any year to come was never going to give me that.  I felt like that from now on each new year will just leave her further and further behind.  Over the holidays there were so many tragic deaths of children.  My heart went out to every one of those parents.  People often say to me they cannot imagine what I am going through.  I honestly don’t think there could ever be anything more painful than losing your child.

Now I find myself at a new school year.  A year that Pippa should be in year 6, excited about being a leader at school and looking forward to secondary school next year.  I try not to think about that but last week I had to go into school to collect Pippa’s tub.  Yes, you would think I had done that ages ago, but I couldn’t bring myself to do it last year.  I thought I would be OK because I had been to every day of school with her so there wouldn’t be any surprises.  I was wrong.  In the box along with her books and pencil case was her school report which had been put together with beautiful messages and pictures from her classmates.  A report that not only reflected Pippa’s ability academically, but showed me again how much she meant to everyone else and the incredible person she was.

Now everyone is back to school.  Parents shed tears as their children start prep, others swell with pride as theirs start secondary school, some are nervous that they will miss theirs terribly as they send them off to boarding school and Pippa’s classmates become the big grade six leaders of their school.  James and Patrick head into year 10 and year 8 but Pippa goes nowhere.  Patrick is not my youngest.  I will never get to send my youngest child off anywhere.  She’s already gone and she will never come home.  Not at the end of the day like most school children nor the end of the term like the boarders.

Pippa is never ever going to or coming home from school again.

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Ten Fingers, Ten Toes and a Cute little Button Nose

28 September, 6 months.  James decided to dig deep into his wardrobe and have a clean out.  A feat generally unheard of from a teenage boy!  I didn’t realise he was even doing it until he emerged carrying a box.  Apologising to me he handed me the box telling me he thought that in it were some birthday cards.  James’ bedroom used to be Pippa’s before I moved her into a room close to mine.  Close so I could hear her every breath every night.  And then, later,  I moved her even closer – right into my room.  James was correct.  In the box was a collection of birthday cards of Pippa’s.  I knew this without lifting the lid.  But lift the lid I did anyway.  To my amazement sitting on the very top of some of her birthday cards from when she was a toddler were two ultrasound pictures.  They were from twelve years ago to the day.  The hairs stood up on the back of my neck, my heart stopped and I burst into tears.

Ten fingers and ten toes.  As parents we all check and count with the same intensity of looking at a four leaf clover – making sure we’re counting correctly.  We listen for the first cry – a sign of good, healthy lungs.  We marvel at our newborn’s instinct to attach to the breast and suckle.  They scrunch up their little bodies so used to being curled up in the womb and then time stands still when they first lock eyes with their mother.  Perfect moments of bliss.  Pippa was all that.  Perfect in every way a tiny little newborn should be.  Perfect in the way that all mothers want and hope that their newborns are.  She was born at 39 weeks measuring 48cms and weighing 8 pounds 1 ounce.  ‘Short and fat’ I remembered my brother calling her!  She had an Apgar score of 9 at 1minute and 10 at 5minutes.  She breastfed immediately.  She slept perfectly.  She rarely (in fact I could almost say never) cried.  Pippa was utterly perfect.  A blessing to James, Patrick and me.  Utterly adored.  A treasure we only had for eleven years.

Ten fingers, ten toes, a cute little button nose and a time bomb ticking inside her brain.  I found myself wondering what if I had have known then? What if, at her 20 week ultrasound I knew what twelve years time was going to bring me?  Of course I would have not done a thing.  How could I not have a life full of Pippa for eleven years?  How could Pippa not have a life of eleven years?  Would have our lives been different if I had known what was going to happen?  They most certainly would have.  I know how I was for the 2 years I did know what was going to happen.  A living hell every time I shut my eyes.  I shudder at the thought of having to do that for 11 years.  I’m grateful that twelve years ago I didn’t know what lay ahead.  I would not have wanted that crystal ball.

I then found myself wondering about the next 12 years.  What would the crystal ball show if Pippa hadn’t had a time bomb in her head?  Would she grow up OK?  Unscathed?  The 6 o’clock news doesn’t give us much comfort for what lies ahead – fears for teenagers and young adults; and the fears for our daughters are possibly worse than those for our sons.  I found myself asking what if I just accepted the time bomb and alleviated those fears?  No was the very quick answer.   I would take any fear that I could possibly ever have for the future if it meant that Pippa was still here.  We can hold our children tightly and fear for their safety, their wellbeing and their future.  But I can’t hold Pippa anymore.  To be able to hold her, feel her, hear her, see her smile…far outweighs any fears that the newspapers and televisions can put in front of me.

Instead I have new fears.  Fears for me, James and Patrick in a life and a future without Pippa.  Fears for our wellbeing.  Fears for the scars that Pippa’s brothers will forever carry.  A tragic burden they should never have to endure.  Heartache.

Count as we might, superstitions or not, it turns out that ten fingers and ten toes cannot guarantee us anything.  Not life.  Not happiness.  Not health.

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