Pippa Rea

Pippa's Journey with a Brain Tumour

Time Heals

Nope, it doesn’t!  

It may to some people.  It may in some circumstance.  Not me.  Not mine.  Time does not heal. Yes, things change, I have needed to reenter “life” but it will never be a carefree, life as I knew it before (everything now is time-lined to before, during or after) and there is always a shadow. My life now will always be fraught with obstacles and hurdles I need to get over; for want of a better word, milestones.  Some I see coming like a freight train.  They’re the obvious ones – the anniversary, the birthday, anyone’s birthday, Christmas, school years…  Others, hit you like a tonne of bricks when you least expect it.  A dog that follows you and then, when you bend down to look at it’s tag, you see it’s called Pippa.  A girl in the street wearing an exact same outfit as her.  A song on the radio.  A phrase.  A sound.  A smell.  Finding something you don’t expect in a cupboard…

It’s a farce to think you only have to make it through the first 12 months.  I think people tell you this to make themselves feel better.  “Once you get through the first year you’ll be right.”  Wrong.  They want to believe that once that first year is over you’ve gone through everything you need to.  It’s not true.  It all just keeps coming. And coming.  In fact, I made the mistake to assume that because I had made it through one birthday I could make it through another.  I couldn’t.  It was worse.  The second birthday without Pippa seemed to bring with it validation.  Reality that there was never ever going to be another birthday with her.  No birthday cuddles, smiles, kisses.  Nothing.  Ever.

Her second anniversary was today.  I felt physically sick and worse as the day went on.  The anxiety in the pit of my stomach just wouldn’t shift no matter how many deep calming breaths I took.  Then there’s everything else.  The primary school graduation.  That was hard – I didn’t function outside of it for the whole week.  The day where she should have started year 7 but didn’t.  Special occasions for James and Patrick where Pippa should be there, bossing them around and most importantly giving them proud little-sister hugs.  This is all just going to go on for ever.  The chasm is never going to close.  Today she’s missing from birthdays and school functions, in years to come she’ll be missing from weddings and births.  And everywhere in between are going to be all the unexpected heartaches that catch me when I’m least prepared.  It’s never going to end.

I don’t think it’s time that heals, it’s just a new kind of life.  A life without Pippa and it still hurts every single day.  I took flowers over to her memorial seat this morning and left them with a note.  I didn’t have to think for one second what to write on that note, I just used Pippa’s very own words:

“Every Second…Every Minute…Every Hour…Every Day…”

It doesn’t change.  Time can’t heal this pain.

 

I have not written here for a while.  Why? Because I tried to write for other reasons.  Reasons that weren’t intrinsic, reasons that were not based on what naturally flowed out of my fingers onto the keyboard.  Thus, I just stopped.  I thought as time had passed then I had to change why I was writing.  I was wrong.  So wrong.  Instead, words have piled up and up in my mind bursting at the seams to get out.  

I could write in a journal or just on a computer document, but I like doing it here.  Im not sure why here is different, but it is.  I can see that a lot of people still visit to read my posts or to see if I’ve posted anything new.  When I first started writing this blog I was just using it as a form of communication.  Now it seems to have become more than that.  I don’t mind that people from all over the world read my posts, that organisations refer other families to my blog.  I am glad to help and I am grateful for all the messages I have received from all over the globe both when I was continually writing and also those encouraging me to start writing again.  

Yes, I still wrote but not on here. One piece I wrote I will post here because it needs to be read by thousands of people.  Words and tears flowed in unison.  It was written for the right reason and that reason is simply to convey it to as many people as I can that may find themselves in a similar situation.  I hope that I can influence others to do what we did so when I post it, share it, please.  

Writing cleanses me and is far more beneficial to me than time. It is an important part of my calamity.  Sometimes, when I knew I really needed to cry but the tears felt like they were stuck, I would type a post and out they would flow.  It would make me feel so much better.  Exhausted, but better.  

I’m going back to writing for the right reasons.  My reasons.  

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How I Dealt with a 12 Month Anniversary

I was cautioned that sometimes the lead up to anniversaries and other significant times may actually end up being worse than the day itself.  Thus, in the best way I know how to deal with things, I launched myself into a project complete with a colour coded, formulated and cross referenced spreadsheet.  What I thought was going to be a distraction in the lead up has ended up being a therapeutic and sharing experience that has involved many and has been graciously received in exactly the way it was intended.  A month later I have nearly finished it.

Let me start with the full story that inspired the project……

Last year in May I went away for a few weeks and returned in June to the garden bed outside our front door full of beautiful yellow jonquil flowers.  These flowers I picked through most of the winter and put in a vase beside Pippa’s bed.  The fact that the jonquils were growing there was not a surprise at all yet last year their existence meant so much more than it had previous years.

In 2012 I had my first year as Co-ordinator of the St Josephs Primary school fair.  A role that I did for 4 years and enjoyed every minute of it.  That first year a friend of mine came to me at the end of the day and said, “Virginia we didn’t sell all the bulbs, why don’t you take some home to your garden?”

“Me plant something and keep it alive?  Hell no, don’t give them to me!”

Jane instead turned to Pippa and proceeded to tell her how to help mum,  “Just throw them onto the garden bed and then poke them into the ground”.  Needless to say we came home late at night with Pippa eagerly carrying bulbs along with everything else she had collected from the day.

Pippa of course insisted we plant the bulbs together.  I can vividly see her standing there trowing them and then us helping each other poke them in.  Of course she adjusted a few landings so that they were positioned how she wanted them but she laughed and giggled and had so much fun.  These bulbs flowered from the very first winter.  Unfortunately, Jane tragically lost her brother  since then and perhaps that is why the memory of Jane and Pippa and the bulbs is so vivid.  Jane literally planted this seed in our lives and now those little bulbs that started as a few mean so much more to me.

At some point when I was picking them last year I thought about how nice it would be to have bulbs everywhere in memory of Pippa.  Thus, Project “Pippa’s Pot” was born.  Pots were sourced and the knowledge on the ability to actually grow a bulb in a pot was sought.  James has drilled holes in every single pot, Patrick has planted the majority of the bulbs, friends have helped me and most importantly, help from Armelle and Ana was imperative in the writing and bow-tying areas.  Even Chloe turned up on a day we were elbows deep in ribbon which was just perfect timing.  The help from those three girls meant so much to me for Pippa.  The project transcended tears and sadness and instead (through Pippa) brought laughter, joy and togetherness at a time when it was always going to be difficult.

To date we have made and delivered 150 pots.  They have been left locally, in Melbourne, to the Royal Childrens Day Oncology Garden and in the special entrance “Pippa Garden” at Peter Mac.  I have to clock up a few more miles to deliver the last that are still waiting for me to take them to their homes – two are heading to Adelaide, a couple in Ballarat, a few more in Melbourne, one or two locally and one that needs to go for a ride on the ferry which means poor me has to have lunch in Sorrento one day soon.  Unfortunately I can’t get them to QLD or WA but I suspect bulbs may not go so well in FNQ.  No doubt I will  have missed someone and I am sorry, but please if you or, in particular,  your child, need one forgive me and just shoot me a message – I will happily make another.  I had to stop at some point.  Of course I keep thinking of more that I could have done (and perhaps will still do) – that is Pippa though, so many people who love her.  To my many cousins, for your children, you will find a Pippa Pot with your parents’ homes for your families to enjoy the blooms.  It’s been lovely to hear everyone talking about whether or not their “Pippa Pot” has started to sprout and just as lovely to receive pictures of them sprouting.

It truly has been a beautiful, therapeutic project.  One that brings a smile to everyone’s face when they see their green tip sprouting.  Once the flowers have bloomed this year they will naturally die off, multiply and bloom again with more next year and so on.  In essence it is a project about the cycle of life and death.  Pippa is no doubt blooming again herself at the top of the Faraway Tree, dancing forever amongst the moon and the stars.

Many people have asked me about caring for their “Pippa Pot” so with a huge thanks to my lovely and expert gardening legend friend, here are some very detailed instructions.  Remember though, if I can grow a garden bed full……..

 

LOOKING AFTER YOUR “PIPPA POT”

POSITION

Best outside in a sunny location (at least 6 hours of direct sun per day) if possible but a very sunny windowsill will likely be OK.  Flowering pots can be brought inside for short periods to enjoy but avoid heated environments.

WHEN TO WATER

It is really important not to overwater your pot! Many people water ‘just in case’ it needs water and end up damaging the root system and ultimately the plant.

You can tell if your plant needs water by these types of observation…

  1. Pushing a finger gently into the top of the soil and if your finger comes out pretty dry and clean, the plant needs a drink. If potting mix sticks to your skin, its damp – don’t water.
  2. The potting mix will look very light brown if dry and almost black if its damp
  3. Lifting your pot – dry pots are lighter than wet/damp ones. You can get a feel over time for this.

AMOUNT

2-4 cups of water should be ample to saturate the soil. Apply it slowly to allow it to soak in.  After you water, your pot will feel a bit heavier if the watering has soaked in well.  A deep soaking with a few days to dry out in between is much better for the plant than a half cup of water every day. At watering, you want to see water freely running out the holes at the base. DO NOT be tempted to put a dish or saucer under the pot to catch the water. Free drainage is important. If you wish to put a tray underneath for aesthetics or protection of a surface, make sure there is never any water left in the tray.

FREQUENCY

There is no hard and fast rule on whether to water every few days, weekly etc…. it is far better to ASSESS whether the plant needs water every couple of days by the above methods and just water accordingly, as I said, overwatering can cause damage so regular attention is the key, NOT necessarily regular watering.

FERTILISER

A fortnightly liquid feed that replaces one of your regular waterings is highly recommended but this is help the flowering for the following season, the energy required for flowering this winter/spring is already stored in the bulb. If you can’t be bothered, some slow release feed as per packet directions is very easy and only needed once or twice a year.

ONGOING CARE

As the flowers finish, resist the temptation to cut off the dying and untidy foliage. The plants must die down naturally as the bulb is drawing back the nutrients from the leaves to store up energy for next years flowering.

Keep the bulb in the pot or lift the bulb and store in a cool, dark place. If left in the pot, keep it on the DRY side over summer while it is dormant and increase watering in autumn again when the plant goes back into active growth.

As far as what we did on the actual day, the 28th March?  Well, I got up early and with a very dear friend visited Pippa’s Surfboard Seat at Port Fairy’s East Beach.  Our local extended family then joined us at our home surrounded by Pippas things, photos and of course, Nibbles who spent most of the morning sniffing his way around Pippa’s bedroom.  We lit candles, did a meditation and had a brunch before all getting on a charted bus and heading to the MCG where we met up with some other special family and friends to watch Geelong v Hawthorn.  A match that I think James, Patrick and I will now go to every Easter Monday.  Pippa absolutely loved going to the footy to watch Geelong play.  Yes, the day was long, but there is no other way Pippa would have wanted us to do it.  A little bit of reverence but a whole lot of fun.  I just wish she was right there with us.

For James and Patrick I made a large framed collage filled with individual memories of photos close to their own hearts.  The one photo they shared the same was that beautiful one from Paris when Pippa flung the doors open the doors of the hotel the minute we arrived, walked out on to the balcony, turned around and declared, “Mum, I love Paris and I want to live here forever!”  In their frame  they also share a poem that I adapted especially for them (original author unknown).  I can’t read it without crying but every word is true….

Pippa,

You’re in the sun, the sea, the wind, the rain,

You’re in the air I breathe with every breath I take.

You sing a song of hope and cheer, always and forever near.

I see you in the sky above, hear you whisper words of love.

With your eyes so blue, your hair so long, you’re always with me, never gone.

Your cheeky laugh helps me be alright, even though I miss you day and night.

I smile because you are my Pippa, now and for always my little sister.

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I need her to be remembered forever. She is the most beautiful girl inside and out.

I miss my little darling, my little girl, my daughter and my best friend so much.  That will never ever change no matter how many anniversaries go by.

 

 

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12 Months since that precious last breath

There are no words at the moment. 

We are having a family day and in true Pippa style and the way we lived the last 2 years of her life we have organised a fun activity in her memory. We love her every minute of every day and we will have her smile and laughter with us always. 

Today is no different. 

   
   

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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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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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