Pippa Rea

Pippa's Journey with a Brain Tumour

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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Brain Cancer Research

Yesterday when the rest of Warrnambool and our surrounding district were contemplating whether or not to brave the wintry conditions and head to the race track for infamous Grand Annual Steeple Chase, James, Patrick and I headed down the very familiar road to the Royal Childrens Hospital.

It was a purposeful visit so I had not even considered that I would feel strange going there again, or perhaps even worse, get quite upset or not be able to walk in.  On reflection though, Pippa’s visits to the hospital had really not left us with a sour taste of any sort.  Once she had overcome a few traumatic “firsts” – surgery, treatment, blood tests, tablets………. she always entered and left in happy spirits, leaving a blazing trail of smiling faces in her wake.  Whilst our news and appointments could quite often be traumatic and heavy, Pippa was never sad when she was there.  I guess, yesterday, it just felt a little strange to be there without her running around.  I found myself a couple of times expecting her to come bounding back from a stint in the Starlight room or finding me after having visited her friends at the security office who knew her by name.

Our main purpose yesterday was to take a tour of the Murdoch Childrens Research Institute.  Actually, not the whole facility, but the Tumour Tissue Bank Laboratory.  We donated Pippa’s tumour to research post mortem and when I made this decision last year I had one request.  Pippa’s doctor was surprised, but only too happy to arrange for us to see the laboratory and understand a little more.  I felt that it would be good closure for us on the “disease” and I also felt that James and Patrick would benefit from seeing the nuts and bolts on what happens to the “donation”.

Together, we learnt some incredible information.  On the night the tumour was removed Pippa’s doctor rang me to humbly thank me for the rare gift we had given him.  He told me they had already started testing and working on it.  Our “donation” is only one of two DIPGs that have been received at RCH but the only one that has been able to have cell lines grow from it. Apparently this is actually quite difficult and not always achieved meaning there is less scope for the donation.  Without becoming too scientific (and risk incorrect information), our “donation” has resulted in the growth of live cell lines from which stem cells will also be grown.  What was intriguing is that each cell line has to be “fed” once a week – nutrients for growth such as glucose!  In addition the “donation” is now in 100 different tissue samples and from this DNA and RNA of both short and long lengths have also been obtained.  The vials of tissue are stored in the freezer at -80degreesC (it was fun touching the ice but we didn’t dare try out our tongues!) and the cell lines are stored in an incubator at body temperature; 37degreesC.

I must say, after all these years, whilst listening and looking through the microscope, information and knowledge from my high school science classes came rushing back to me!

In short, our “donation” is kept and researched on forever with some of the cell lines and tissue samples already beginning to be sent to other labs in Australia and around the world as applications for them start to filter in.

I was pleased to see that our “donation” has a number and not a name.  I always told Pippa the tumour was not part of her and did not belong where it was.  Instead, I left behind Pippa’s bookmark so that her happy face could beam from the Paris balcony each day marking the lab book as the scientists log their work.

In the last few weeks Pippa had asked me if the tumour could ever be removed.  It was different than when she had previously asked the same question.  That was the time for me to answer honestly that yes it could be and to say when that was able to happen.  She knew what that meant.  A conversation a mother should never have to have with her daughter.

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Public Notice of Thanks

On Saturday I placed a public notice in the local paper extending our personal thanks to the community.  It would be remiss of me not to extend that thanks further to friends and family across Victoria, Australia and around the world.  Thus, in continuing to use this blog as a form of communication:

Pippa Rea Thank You

I feel like I will be numb forever and I feel like I will always be looking around for her or wanting to tell her something, hold her hand, laugh, sing……..waiting for her to run into the room and give me a big cuddle.  Sometimes I even think (or perhaps wish) the beautiful photos that she ensured surrounded me before she went would come to life.  It’s a hole that will always be with me and will never be filled but I am eternally grateful to everyone for their support.

True to Pippa and her love of music, words to another song from her playlist come to mind…….

At the end of the day some you win, some you don’t,

So I’m glad that I’m here with some friends that I know,

Always there with a smile saying, “You’re not alone”.

My darling little girl…………

Love

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Farewell to our Beautiful Pippa

Pippa's Sunset

I knew exactly how I wanted to farewell Pippa……something perfectly Pippa and very much reflecting life.

We started in Warrnambool’s tranquil botanical gardens in the afternoon sunshine surrounded by birds, flowers, trees and ducks.  We walked across the little stone bridge that Pippa had run over, fed ducks from and poked her head through many times.  A huge crowd graced the sloping grassy hill.  There were so many people, yet by the many messages I had received, I also knew there were so many who were unable to attend.

Children collected a bookmark as a keepsake to remember Pippa by.

Pippa herself was brought to life on the large screen in videos and photos – singing, dancing, drumming, running, cartwheeling, smiling………..always smiling.

I wanted people, particularly children,  to be able to look at Pippa’s casket and rather than thinking about what was on the inside, wonder at what was on the outside……

a collection of her drawings…….

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Once again, my boys took my breath away and I had to draw on all my strength not to cry as they each stood at the microphone to read the Eulogies they had written for Pippa:

James’ Eulogy……….

Pippa is my best friend.

There are many things I love doing with Pippa.  Things like piggy backs, plenty of adventures and very recently, swimming in the pool and walking to and from school in the chair with Pippa.  Pippa has given all of us lots of wisdom and advice.  As a family we have done so much.  There are thousands of things to say about Pippa.

I would really like to thank all of the people and friends. that supported me and my family.  There are just too many people to mention but I would particularly like to say thanks to Darcy, Harvey, Ryan, Jack, Harry and Lucas for always being there to support me.

Even though Pippa is not here anymore, she will always be with us.

Patrick’s Eulogy……..

I’ll never forget how much Pippa has helped me throughout my life.  She is the most kind, helpful, caring, and generous person I’ll ever meet.  We shared so many great memories together from going to Paris to snorkelling in the Great Barrier Reef.  I would also like to thank all of my family and friends for their support and help throughout this journey.  

I’ll miss you Pippa.

Pippa’s Heaven…….(my Eulogy)

Pippas Heaven

One day Pippa had the opportunity to draw her picture of heaven and then when she was finished she wanted to explain it to me………

Pippa’s heaven is beautiful. It is full of life. It has stars, music, birds, flowers, water, puppy dogs and bunny rabbits. It has a big yellow castle where she will live. It sits on top of the clouds.I asked Pippa if that was the staircase to heaven. She said, “no mummy, that is a ladder so you can climb up and visit me.”  She wrote a list of other names who could also climb the ladder to visit her but she ran out of room on the piece of paper so she wrote……and lots more people.

 I asked Pippa about the rain.

“It’s not rain mummy, it’s drops of water.”

“When you feel drops of water on your face you will know I want you to come and visit me for a while.”

In these last few months Pippa has asked me to read her the Enchanted Wood and the Far Away Tree.

It has helped calm her and has resonated and extended these thoughts of Heaven.

To her, heaven is like the Far Away Tree.

Full of magic and wonder……

 

We have been lucky to have the time we did to share so many special memories with Pippa before saying goodbye……..

Time when she was perfectly well and able to enjoy everything……

Holidays, dreams, friends, family..…… Memories……

Over the years we have marveled at her skills in sport,

and now more recently, her maths and games of both strategy and luck.

Her mind, memory and cheeky spirit remained with her until the very end.

 

Pippa’s determination and “can do attitude” never faulted. On Sunday she typed on her ipad……….

“Remember what we said last time? When we go to the beach again we could try a nippers board. Well, today I am feeling good.”

 We went to the beach to use the beach wheel chair.  I knew a nippers board wouldn’t be possible.

I told her, “Pippa darling, Marli, Rebel, Mark and Jason are all not at the Surf Club today so really I can’t think of anyone else to help you try a nippers board.”

 We got to the beach and John Cook came up to us.  I said, “Pippa, this is John. I know John. We can trust him to lift you safely into the beach chair.”

 Pippa’s eyes lit up and she said, “Great! He can help me on the nippers board too!”

Boy she was tough! 

We suggested she see how the water feels – maybe it might be too cold on her tummy.

John pushed her into the water so her toes could get wet……..

Like that was going to cut it!

 She signaled to go out further and further……..staying in and waiting to get used to the freezing water.  Covered in goose bumps we got dumped by a wave and eventually went back in. It was a bit too cold to try a nippers board.

 But it wasn’t too cold for ice cream.  We went to the kiosk and with that same determination Pippa insisted the wheel chair be removed and she not only stood, but walked along the freezer to choose an ice cream…….by herself.

 

Pippa was very frank and always said exactly what she thought but with just the right amount of sweetness and a special touch of spark ……..

 One day a year or so ago we were sitting in my Auntie’s kitchen. Pippa looked at Camille and said,

“You’re pretty old.  How old are you?”

Camille laughed and replied, 83

Pippa said, “Yes, I thought so.  You must be just about ready to die!  I know that because most people die in their 80s so you’ll probably die soon.”

Pippa was always helping others or making them feel better about themselves………

Whether it was sorting out disagreements in the playground at school, helping shy children settle into school, encouraging someone to try something new and not be frightened, or helping out a stranger……She always had an understanding of what others needed and how they were feeling.

 Pippa looked after her friends. If you were ever invited over for cooking it was probably because she thought you needed a little extra love.  On Tuesday she told me she wasn’t feeling well enough to go and watch Patrick running in the district athletics. Instead she cooked cupcakes and arranged them beautifully on her cup cake stand for him so he knew she had been thinking of him.

I want to share a card that I received this week. When I opened it I jumped for joy and immediately thought how much Pippa would love to know that Sara her old neighbour was thinking of her………….

Dear Virginia, James & Patrick………

Sincere condolences over the loss of Pippa who was such a bright spark.

She filled so many people with such joy, and I feel lucky to have shared a little piece of her life. I will always remember her happiness, sense of adventure and, mostly, her frank and unreserved honesty.  She shared many pearlers that left me in stitches, but I think my favourite was when she said to me,  “Sometimes my mum sends me over to ask for parsley or tomatoes from your garden. But your aren’t here very much, so I just take them anyway”  Remembering that still makes me laugh!

I will miss my little garden helper, and the ladder her brothers lovingly made for her to visit her neighbours.

Thinking of you all at this time,

Sara, Amy and Hayley, your former neighbours from over the fence.

 

Pippa was charming, intelligent, a spark, full of happiness, energy and spirit.

She had an aura that captured everyone. She used to say to me, “Mum, no matter where we are when I walk down a street people look at me and smile……….”

Her beautiful blue eyes that drew everyone in remained full of life until the very end.

 

Pippa knows how much she is loved and by how many people.

Pippa has especially felt the love of her brothers James and Patrick – The best brothers in the world.

They have loved, cared for and protected her not just this past 21 months, but for 11 years.

Pippa made every day count and James and Patrick have been part of every single day.

 

Pippa knows everyone will be sad. And she knows everyone will be sad for a long time.

It’s OK to be sad, she said.  It’s OK to have Sad Feelings and Happy Memories.

 

We all have so much and so many different ways to remember Pippa.

 We will all remember her long hair,

We will all remember her sparkling blue eyes,

We will all remember her cheeky smile…….

 

Pippa, so full of life…….

A Perfect, Angelic Doll inside and outside

 

Sad Feelings and Happy Memories

 

Pippa, my poppet, my darling, my soul mate, my sunshine, my sparkle, my light, my sweetheart………

 You will always and forever be with me.

You will live on inside me forever.

You will always be “Legs Eleven”

 

Pippa, no one will ever……………….love you as much as I do

We finished with blessings and everyone then closed their eyes and listened to the sound of the meditative singing bowl which Pippa loved to relax to at the end of her yoga meditations with Patricia.

It was a sad but beautiful day.  The sun came out as we entered across the bridge, birds chattered and squawked above in the tree tops, ducks swam on the pond behind the stage, a helicopter flew overhead as I read my Eulogy and a gust of wind swept through as Pippa’s casket was lifted to depart the gardens.

We farewelled Pippa at the bridge whilst listening to a passage from the Far Away Tree.  I watched her butterfly painting on the end of her casket go perfectly over the magical little stone bridge and disappear canopied by the weeping willow trees

Our final farewell for Pippa was placing frangipanis in the beach off the jetty………

The moon came out from behind the cloud at exactly the same time James, Patrick and I stood at the end and threw ours in together…….

A perfectly beautiful finale for a perfectly beautiful girl…………

“Some people come into our lives and quickly go. Some people move our souls to dance. They awaken us to a new understanding with the passing whisper of their wisdom. Some people make the sky more beautiful to gaze upon. They stay in our lives for awhile, leave footprints on our hearts, and we are never, ever the same.”

-Flavia Weedn

Thank You to every single person who came (and also to those who couldn’t) to support James, Patrick and me yesterday in our perfectly beautiful tribute to Pippa, the wondrous life life that she had and the truly amazing person that she is.

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