Pippa Rea

Pippa's Journey with a Brain Tumour

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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A Beach Girl Forever

Pippa loved the beach. I have so many photos and videos of her in the water, on the sand, in the dunes…jumping, running, playing, cartwheeling, catching waves…even performing dances.

I remember taking her on a special trip to Torquay to buy her first pair of bikinis.  Proper grown up bathers.

When planning Pippa’s memorial service I knew that I would never want to go and visit a plaque or a headstone in a cemetery.  In Pippa’s words that would be seriously boring!  I knew I wanted something to reflect her love of the beach and I knew that in time it would come to me.

In a perfect tribute to Pippa a series of events fell into place.  Pippa had spent many summers on the picturesque East Beach at Port Fairy doing nippers.  It was only fitting that this would be the place we chose to place a memorial seat.

Now on East Beach foreshore, in time for the summer holidays and backdropped by the blue waves and pretty lighthouse on the horizon, sits Pippa’s magnificent bluestone surfboard seat.

There in her memory but for everyone to enjoy.  Precisely how she would want it.

By chance when we went to the beach today some friends were there. Exactly as intended Pippa’s seat created much interest.

We hope that over the summer and forever to come people can enjoy, play on and photograph Pippa’s seat. #pipparea

 

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A Selfless Act

When we toured the Royal Children’s Hospital Tissue Bank to learn more about what our donation meant, I discovered that the laboratory is funded 100% philanthropically via the efforts and fundraising of an organisation called CIKA – Cancer In Kids @RCH.

As a parent it’s my responsibility to care for my children emotionally, physically and financially. Simply because Pippa has passed I don’t believe I owe her any less.  Thus, I asked the question whether or not I could set up a direct financial line to our donation?  I have never considered that tumour as being a part of Pippa, but I feel that the donation of the tumour and financially supporting (in whatever way I can) that donation is something that I need to do.  Luckily, I asked Pippa’s oncologist who would never dream of saying anything is too difficult or restricted by red tape.

Across subsequent visits, it became clearly apparent how precious our gift (donation) was. The tissue bank has only been collecting since April 2014. Since then of the nearly 200 donations from biopsies, surgeries and unfortunately, deaths, only 4 donations have resulted in priceless growth of cell lines. Ours is one of those four. Our cell line has been grown and is being sent off around the world for research. DIPG research is not only valuable for future children of this most horrific and cruel cancer, but due to nothing being known about it and its complexity, knowledge and research on DIPG has the ability to unlock answers across all tumours.

James, Patrick and I made the first donation to CIKA (Pippa’s Trust) followed by a group of local ladies who specifically wanted to donate to research directly related to Pippa.  I was pleased to be able to offer this direct ability.   Another donation has now also been made via the Robert Connor Dawes (Research, Care and Development) Foundation and, in particular, a selfless young lady, Hayley White, who is currently undergoing her own battle with brain cancer.  Hayley could have used this money for herself, but instead wanted to donate it to research related to RCH and Pippa. Rather than rewrite words already written, I will instead use those of RCDFoudation………

Today we donated $20,000 to support RCH’s tissue tumour bank in memory of Pippa Rea. That’s special in its own right but the story behind our donation makes it extra special. Several months ago 24yo Hayley White contacted Liz. She had recently been diagnosed with a stage 4 GBM brain tumour. Her friends & family were eager to show their support and proposed a fundraiser. Hayley didn’t want the money for herself but to help research into children’s brain tumours. A friend suggested our charity as she had done Connor’s Run. Hayley mentioned she was from Warnambool area, when she heard about Pippa Rea (also from Warnambool who lost her life at 11 to DIPG brain cancer) she was clear she wanted any $$ raised to support RCH research efforts. Over $17,000 was raised for Hayley! In keeping with Hayley’s wishes we consulted Virginia, Pippa’s mum. Pippa’s tumour tissue & cell line is at RCH/Murdoch Research Tissue Bank to be used in research at RCH & shared globally. This is rare & vitally important. So today Hayley, Virginia & Liz made the donation to RCH Tissue Bank. We rounded up to include other generous donations made by the Warnambool community in memory of Pippa. We are all genuinely touched by Hayley’s selfless, generous, big hearted nature…trying to do some good in the face of something so cruel. Today felt so v special, thank you Hayley.

Thank you Hayley (and to others who have fundraised and given money to RCDF in memory of Pippa).  Thank you also to Liz Dawes and the Robert Connor Dawes Foundation for seeing this as another worthy way they can contribute to research into brain cancer. Whilst not conventional, what I have set up means that fundraising or donating money to research in Pippa’s memory is possible and will go to the RCH Tissue Bank (DIPG326) CIKA (Pippa’s Trust) and to be used specifically on research and needs directly related to our donation.  As Pippa’s mum, I will continue to add to this regularly.

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Artistic Inspiration

Recently  I met Pippa’s class at the art gallery.  Pippa’s portrait is on display in a local competition.  It has been entered by her Teacher Aide who spent a lot of time with Pippa both in the classroom this year and at our home.  They would laugh, play games, find cool music apps, draw, paint, do assignments and of course her favourite school work – maths.  Pippa was very chuffed that she was capable of doing maths equations far beyond her years and Jeff always left our home with sheets full of math problems and numbers depicting the latest numeric patterns they were working on.  She even did this on her very last day.

Needless to say, Jeff, like everyone has been deeply affected by the loss of Pippa.  Jeff stays in touch which is lovely and along with registering her star on our behalf, he has put his feelings into two magnificent pieces of artwork.

We went along to admire his talent and the class of E1 then had some quiet time drawing or writing what they felt on paper. There were some attempts at replicating Jeff’s portrait, but there were also a lot of beautiful frangipanis drawn – art again inspired by Pippa!

Both of Jeff’s pieces are done with fine pencil and the detail is incredible.  This portrait is currently hanging in the Warrnambool Art Gallery until 16 August

Pippa Rea, Legs Eleven

 

I’m almost certain Jeff’s portrait received quite a few “people’s choice” votes that day!

Jeff is still entering the following drawing in art competitions around the country.  Every time I see it it takes my breath away – as someone said to me, they have never seen someone so recognisable from behind!  Good luck to Jeff on getting this piece of art displayed somewhere as well.

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Jeff has written very moving and just as touching words that accompany these pieces:

Pippa Rea (Legs Eleven)

I’ve always thought that people come into your life for a reason. They come into your life and make an impact either large or small. You may notice, you may not. I am a teacher aide at a primary school, and this picture is about a special little girl who I supported at that school. She was a very active, friendly, intelligent and an inspiring girl who liked to dream big.

When I first met her I knew she was special. I knew she was in my life for a reason. This special little girl was fighting a big battle with terminal cancer. Everybody thought that she didn’t have long to live, but I was determined and motivated to help her fight it and become better again. As the weeks went by her illness expanded, leaving her unable to walk, talk and hear very clearly. This didn’t stop her though, she was still eager to go to school and hang out with her friends and do school work. On her days when she was unable to make it to school, I was assigned to teach her at her home. It was a very challenging and different experience for me, however, I enjoyed every moment of it. This experience helped me grow as a person by giving me courage and inspiration to live life to the fullest.

Away from school, she liked to play music, especially drums. Unfortunately, with her illness and lack of movement, she wasn’t able to play anymore. However, she could still use her right hand, so I downloaded some drum apps on her iPad so she could still play. She also liked to paint and draw, which was great because it was something I liked to do and that we could do together.

Early this year, she passed away peacefully in her sleep. I was beyond devastated. When I received the msg on my phone, I was right in the middle of the city (Melbourne Central). Surrounded by busy city life, the whole world seemed like it had stopped.

This picture is explaining about this special little girl and her next journey. The ripples in the water are representing multi-universes and different dimensions. She is walking through these dimensions trying to find her own special place. The picture fades out into the distance and is representing the unknown, and that is where her next journey begins.

This special little girl has put a mark on my life forever, and has inspired me to do bigger and greater things. I will always remember her courage and strength, wherever I go and whatever I do. Every time I do a drawing, go for a surf, play music and even going on adventures. She will always be there in my mind and I know she is out there watching over me and everyone else.

Jeff is also the owner of the grey haired, blue eyed husky – precisely what Pippa has always wanted for her 16th birthday!  Exactly the gift I as mother of a long legged, beautiful individual was going to be very happy to give her!!

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I am proud to be Pippa’s mum and proud of the inspiration she has unknowingly bestowed upon others.

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Starry Starry Night

On these clear winter nights we have come accustomed to wandering out into the chilly air and star gazing. Particularly in the direction of the Southern Cross and a little star sitting alongside its base that is now and forever known as “Pippa Rea (Legs Eleven)”.  The purchase of a telescope is in order I believe.  

   
 

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Friday 26th June

Today is 2 years since I took  Pippa to the doctor and discovered a lump in her brainstem.  Today is confusing.  I don’t know whether it’s a day I recognise anymore or not.  In reality, it’s old news I guess.  Today’s date has been surpassed now by another date.  

Still though it sits with me as a day I will never forget in my life.  A day were my anxiety levels were high before seeing a doctor.  Call it mother’s instinct.  I knew I was not going to get good news.  I’d been in tears three times on the phone trying to book scans before even seeing the GP.  I had stood at the counter in the doctors’ clinic in tears trying to make an earlier appointment.  Does she have a fever? No.  Is she vomiting? No. Does she have any pain? No. A cough? No.  Well, what is actually wrong with her?  I don’t know.  I did know.  I knew that something was drastically wrong but I had no words for what it was or how I knew.  

From the moment we walked into he GP’s room though we were fast tracked.  Fast tracked into a whirlwind of spinning madness.  

We were told to go home and get a book each ready for the long wait for a scan as Pippa was being squashed in at the end of the day.  We didn’t even open our books, nor did we even have a seat in the waiting room.  Pippa was straight in and onto the machine for her first of many MRIs.  There was no wait.  I was told to leave and go for a walk.  I rang a friend in Melbourne to ensure her scans got read quickly.   Little did I know they were being read live in Melbourne as I was talking.  

And then the whirlwind really started.  It picked it up and spun us around and around and around with dizzying consequences rushing us to Melbourne in the middle of an horrendously foggy night.  A drive that took us over 4 and a half hours. It kept us awake and with doctors for the next 24 hours.  

It doesn’t really matter whether I recognise this date or not.  I think about it anyway.  All the time.  Every single day.  

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