Pippa Rea

Pippa's Journey with a Brain Tumour

Innocently Beautifully Sad

It’s now been more than five months since we lost our beautiful Pippa.

As the day approached (the 28th of every month seems to loom as a dark shadow slowly creeping up to engulf me) I thought I was prepared and in control, expecting how my feelings would unfold and what events would mark the day. I was wrong.

I thought that the “five months since losing Pippa” was going to be marked by the beautiful, selfless and humbling gesture shown by Hayley. It wasn’t.

On the morning of Friday 28th August (5 months) I could not ignore the fact that it was “book week” and everywhere I looked were primary aged students (Pippa’s school friends) dressed up as characters from books. I found myself wondering what Pippa would have gone dressed up as?  I have photos of her dressed up as Miss Marple from Agatha Christie, Gabriella from High School Musical (yes, I had made her produce a book!) and my favourite, up a tree as Koala Lou.

Would Pippa have gone as a character from the Faraway Tree?  No, because if she weren’t dying she wouldn’t have been searching for comfort and solace in the magical stories of the Faraway Tree and its warming characters with its mystical lands listening to chapter after chapter every night for the last four months of her life. Would she have gone dressed up as Ruby Red Shoes visiting Paris? No, because she probably wouldn’t have received the book as a gift on her 11th birthday as we wouldn’t have taken a trip to Paris if she weren’t dying.   What character would Pippa have dressed up as for book week in grade 5?  I don’t know.  One of many “I don’t knows” I’m going to face as I gingerly bypass small and not so small milestones after losing a daughter at the precious age of 11 years to an incurable brainstem tumour.

I thought that the “five months since losing Pippa” was going to be marked by costumes and smiling happy faces of other children dressed up for book week. It wasn’t.

Instead, Pippa’s four-year-old friend, Amyius, innocently marked the “five months since losing Pippa”.

I had bumped into Amyuis in one of Pippa’s favourite shops only the Friday before.  Pippa had bought me many little gifts from this homewares’ shop and had decided it, along with her favourite clothing shop, would be good places for her to have her first part time jobs when she turned 14 years and 9 months old (to be precise).

It had been a while since I had seen Amyius and he had not been to our house since Pippa was lying in her bed the days after she passed.  When he came then he was quiet, tip-toeing around careful not to wake her.  Amyius looked at me that day in the shop with a sad little face and told me he always asks his mum, “When is Pippa going to come home so she can eat chips and play trains with me?”   He told me his mum says she’s not coming home.  It was almost like he was hoping that I would prove his mum wrong and correct the answer he had been given.  He gave me a cuddle and let me carry him and his sad little face to the car.

(Pippa took great joy in showing anyone this “isn’t he just so cute?” video of Amyius sending Pippa a message very early on in her diagnosis hoping she gets better soon so she can eat chips and play trains with him again.)

Coinidently, last Friday night (five months) Amyius came around to our house.  This tiny little boy who I have only ever seen cuddle his family and Pippa, gave me another cuddle, pointed to a photo of Pippa and said, “I miss her”.

Later, as football was being watched and chatter was around the table and in the lounge room Amyius and I went quietly to look at all the photos of Pippa.  We ended up in Pippa’s bedroom. Every night I draw the curtains and turn a lamp on.  There’s a few different lamps in Pippa’s room and I turn on whichever of them I feel like at the time.  This night though, for some reason, I had taken a lamp down from on her bookcase, placed it beside her bed and turned that one on.  I had not done this before.  It was a light a friend from school had given Pippa in probably only her last weeks. It has stars of blue and red that glow on the walls and the roof.  Pippa couldn’t use it to go to sleep with as her friend had wanted her to because her eyes didn’t close properly and therefore the projecting lights were too bright.  We did, however, often to turn it on and look at all the beautiful stars it would make around the room. She liked getting me to move it to different positions and heights as each change would alter the “constellation”.

Amyius walked into Pippa’s room and was immediately captivated by the stars.  He was dazzled! He marvelled at the stars, how they changed and at how much he loved Pippa and her room.  He wandered around asking me questions, looking under her bed, touching things and always coming back to the beautiful stars.  He found some jewel stickers that had fallen under her day bed (covered in teddies) and asked if he could stick the love heart ones on Pippa’s bed for her?  He did.  He picked up her little cow pillow pet that sits on her bed beside her pillow.  He cuddled it.  It smells just like Pippa.   When he realised this he went along every other teddy that sits against her pillow on her bed.  He picked them all up, cuddled them and smelt them.  Each of them smelt like Pippa – Sprinkles, Geoffrey, Henry, Monty and Nibbles Puppet.

Pippa's teddies on her bed

He hopped over to the other side of the bed and using Nibbles Puppet ducked down and performed a puppet show for me in which he was Nibbles, Pippa and Amyius.  He told me that the stars were his and Pippa’s stars – hers were the red ones and his were the blue ones.  They were together in the stars.  He said, “When I go home and go to bed and pray to Pippa tonight I will tell her how beautiful the stars in her room are and how they are sparkling for me and her”.  I told him she could see him in her room and she already knew he liked them.

Eventually Amyius asked me if Pippa was ever going to come back to her room and her bed. With my eyes filled with tears, grateful for a dark room and stars sparkling on the walls I told him, “No, our darling Pippa wasn’t going to come back.”  He knelt down beside her bed and lay his head on her doona.  “Well then,” he said, “maybe I could come and have a sleepover in Pippa’s bed so I can smell her teddies.”

He cuddled me again and then we had to go and get his mum to show her Pippa’s room and have her smell Pippa’s teddies.

 

That’s how five months after losing Pippa was marked………eloquently and innocently and oh so sadly beautiful by little her four-year-old friend.

 

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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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Forgive Me If….

Three months after Pippa has passed and I am still numb.  Please forgive me if I:

don’t speak

don’t get out of the car to watch the footy

don’t sympathise if your child has a cold or a cough over winter

don’t look like I’m following the conversation (I’m not)

don’t socialise

don’t look you in the eye

don’t say I’m sorry that your mother, father, grandparent, uncle, aunt, friend…has passed away at the age of 50, 60,70, 80, 90…  I’m sorry for you but I simply cannot say the words because I am just so raw for Pippa, James, Patrick and myself.  She was only eleven years old!  It’s so unfair!

I still go to tell Pippa things.  I still go to show her a funny photo or a photo of a baby.  I still want to tell her something I have seen or heard or done.  I can’t though and I never remember that; I always have to remind myself that I just can’t anymore.  My little shadow is no longer there.  I go into Pippa’s room every night and every morning opening and closing the blinds and turning lamps on and off.  She would like that I am doing that.

A friend has given me two quotes recently.  They very aptly put into words these past three months:

She’s in the sun, the wind, the rain,

she’s in the air you breathe with every breath you take.

she sings a song of hope and cheer, there’s no more pain, no more fear.

You’ll see her in the clouds above, hear her whisper words of love,

you’ll be together before too long, until then listen for her song.

Pippa’s songs are everywhere.  I especially love it when people tell me about moments when songs that they hear remind them of Pippa.

In her own words it is seconds, minutes, hours, days, weeks, months…

Pippa, there is not a month, week, day, hour, minute or second that I don’t think of you.

Sometimes it’s okay if the only thing you did today was breathe.

I am managing to breathe, but most days at some point I have to manage my breathing.  

Forgive me, but it is so heartbreakingly unfair and I am so terribly heartbroken.

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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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