Pippa Rea

Pippa's Journey with a Brain Tumour

AIM BRAIN and Pippa

Sometimes a journalist has the task of sifting through mountains of information and condensing it into a story.  Sometimes that information is so technical it makes your brain ache.  The story needs to make sense to the reader and to do this the journalist has to assume that her reader knows absolutely nothing about the topic.  Finally, the story has to have a purpose to the reader – the who, what, when, where and why all need to connect.

This week a journalist at our local paper was given the task of reading through pages and pages of a global medical project.  She was then required to understand a complicated web of philanthropic funding that involves a Trust, two Foundations, a hospital, a research institute, a Doctor and the Federal Government.  Her task was to take all this information and make her focal point the link between Pippa and all of this.  On top of that, she had to fit it into a specific space and word count.  Often this can be where mistakes get made or the message gets lost simply because you have so much to explain and not enough words to do it.

Yesterday’s article in The Standard took the information and created the link to Pippa and her community and a better job could not have been done.

When Pippa was diagnosed and treated the only options her oncologist had were to try and extend her life whilst maintaining as much quality as he could for her.  I am forever grateful to him for giving us so much time with Pippa being relatively well and away from hospital and I will continue to help him with his research projects as much as I can.  To try and remove this type of tumour is impossible; it blends itself like the tentacles of an octopus into the brainstem from the inside.  The radiation therapy Pippa received were the same doses as an adult.  The steroid doses, higher than an adult.  The chemotherapy – one drug was an adult brain cancer drug and the other an adult bowel cancer drug.  With paediatric brain cancer there are no drugs specifically for children.  Her oncologist told me if there was a drug he could fly in for her he would.  If there was a hospital he could fly her to he would.  But there wasn’t either.

DIPG326(Pippa’s Trust) was set up after we donated the tissue to the Royal Children’s Hospital Tumour Tissue Bank at Murdoch Children’s Research Institute.  It was the first brain tumour there to give a live cell line.  This means it can be shared as tissue, but also that the live cell line can be grown and multiplied and shared.  Then in turn each cell line grown from the original can be grown and shared again and again.  Currently DIPG326 (the name of the tumour when we saw it in a petri dish) has been shared in Canada, the USA, Sydney, Perth and Melbourne.

The Bank is 100% philanthropically funded by CIKA (Cancer in Kids at RCH).  DIPG326(Pippa’s Trust) sits as a small part of CIKA and holds money specifically to be used to assist research and collaboration into pediatric brain cancer via the RCH Tumour Tissue Bank.   Money there has come from small and large community fundraising, donations, raffles etc from the community, Pippa’s friends, Pippa’s cousins, Schools, local businesses and the Robert Connor Dawes Foundation (RCDF).

RCDF have acknowledged that the contribution made by Pippa’s vast community through monetary donations, volunteering and will continue to transfer annually to DIPG326(Pippa’s Trust) in honour and memory of Pippa.

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Connor’s Run this year is on Sunday 17th September and we have a team of 30 people running or walking for Pippa. There are possibly more that I don’t know about – I usually bump into someone I don’t expect to see.  The Run is 4000 people leaving from Hampton and St Kilda walking or running along the beachfront to the Yarra River boat sheds.  No less than 350 Volunteers are needed to join up and help make this day a great success again

Pippa’s oncologist is one of the lead investigators and co-chair of the AIM BRAIN PROJECT.  He and his fellows will work closely with other leads some of whom are also connected to Pippa. RCDF initially funded AIM BRAIN with the federal government topping up the remainder.  AIM BRAIN will genetically test and study the molecular make up of each tumour individually to allow for better outcomes and treatment.

After the federal government gave their funding the Tissue Bank were then required to be able to perform their part in the project – tissue samples for the project need to be stored and distributed.  DIPG326(Pippa’s Trust) is directly providing the funds for this.

I am grateful for the support I received from a number of charitable organisatons.  When your child dies you are asked numerous times whether or not you will be setting up a charity.  My answer was always the same – no, it would be remiss of me to do so.  Firstly, because I need to be able to provide and care for James and Patrick on my own and secondly because there are so many charities already dipping from the same pool.  Instead I help and support where and when I can.  From our own journey I know first hand what needs to happen, how things can be done differently and where there are gaps.  AIM BRAIN is the first of many projects and initiatives I will be involved in.

When James, Patrick and I toured the Tumour Tissue Bank another of the lead investigators on AIM BRAIN said something to me and it is something I think about often, more days than I care to count.  He said, “Virginia, DIPG is the most complex of all tumours.  So little is known about it that unlocking answers to DIPG could provide answers and cures to many more cancers.”  This is how my relationship with CIKA began, how my relationship with the Robert Connor Dawes Foundation evolved into an continual working relationship and the reason I will always support and work closely with Pippa’s oncologist.

Click on the links, Donate, Fundraise, Volunteer, share and send this blog even wider or simply for now, just pause for a moment and think about our children who had no chance because paediatric brain cancer research was not given priority earlier.

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It’s My Birthday and I’ll Cry if I want to

My birthday is on April Fool’s Day.  No Jokes.

For all my life I relished the date as an awesome day to celebrate a birthday.  It’s a day where silly announcements are broadcast over the morning news headlines, fooling many but not all.  Those who fall for it laugh at their gullibility and those who don’t give themselves a “you-can’t-fool-me” pat on the back.  It’s a day where, as children in primary school, we used to run around putting “pinch me” signs on each other’s backs or scream in horror pretending to see a massive spider on the teacher’s shoulder.  As an adult, it’s a day where my three children have put toothpaste in Oreo biscuits and ‘thoughtfully’ served me afternoon tea.  Or they’ve held on to their hysterical laughter just long enough for me to take a drink from my salt filled water bottle.

Yes, April Fool’s Day is a day where everyone seems to have half a smile on their lips waiting to see what will happen to make them or someone else burst at the seams with laughter.  What a great day April Fool’s Day is to celebrate your birthday!

Like most people, I’ve had many and varied birthday celebrations.   As years go on, we celebrate less or at least, in different ways.  Cards are not often sent and people now send text messages or post best wishes on Facebook timelines.  Many friends send me lovely birthday messages but in some I sense the struggle at using the word “Happy”.   Likewise, others are careful to construct a message sending love and wishes without using the word “Happy”.  Some friends send lovely lengthy words of kindness and kinship.  Beautiful, thoughtful birthday messages, every single one of them.

On my birthday in 2015 friends flocked to be by my side all day.   Several close girlfriends descended on my house for birthday dinner and drinks.  They bore gifts, they cooked, they ate, they drank, they cleaned up and they left.  They didn’t know what else to do so, as only women do best, they gathered.  I was not left alone for one minute.  I was grateful for the attention I received.   I did, however, request that they all leave my house at 8.30pm so I could be alone with my children.  It was not a party.  There was no celebration.  There never will be.  Yes, I’ll have birthday dinners or lunches, probably birthday drinks again, but that birthday will forever cast a dark shadow on April Fool’s Day for the rest of my birthdays to come.

It was a warm, balmy, summery day.  Unusual for the 1st of April.   My friends could have stayed and enjoyed the drinks and the chatter well into the evening.  They didn’t though.  They respectfully left in accordance with my wishes.  My children and I sat together, alone in the latter part of the evening.  We spent special quiet time on my birthday.  Time together and alone.  Time, we will never have again.

Then the time came.  10.00pm on Wednesday 1st April 2015; the night of my 44th birthday.  Late enough on such a warm evening that no one would be out walking their dogs.

On that balmy, false, summery evening, under the cloak of darkness, a vehicle reversed into my driveway.  The back was opened so that my two sons and I could view what was inside.  I quietly inspected it.  The boys, I could tell, were both surprised and moved by what they saw.   The mere sight of it took my breath away.  My heart simply froze and time stood still.  It looked exactly as I had imagined it would.  When the idea came to me months earlier, I didn’t realise it would arrive on my birthday, but there it was – my birthday present.  No one else had been able to visualise it like me.  No one else had the ability nor the clarity.  For me though, the vision had been very clear.  I was awestruck.

As my heart once again started to beat, without daring to move my gaze and in a barely audible voice, I whispered to the man standing beside me, “That’s just how I imagined it,”

“I’ve never seen one more perfect,” he quietly replied.

The two gentlemen calmly asked permission to enter our house.  My sons and I stood in the hallway as they wheeled a large metal trolley into Pippa’s bedroom.  They gently pulled back her Paris doona cover and carefully lifted her from where she had been lying for four days.  They placed my precious daughter on the sterile trolley, covered her up again and silently wheeled her out our front door.  It took less than a minute and it was all done in complete silence.

In our driveway, they rolled the trolley into the back of the hearse beside the white coffin I had especially designed for her.  Despite the warmth, a chill went down my spine as I stared once again at her casket.  It was covered in so many of her beautiful colourful drawings.   Drawings and words that had been created by her little hands.  The same little hands that would always, without fail, slip into mine as we were walking.

The largest drawing was a of big red love heart positioned on the centre of both sides with the word “Mummy” happily handwritten above.  Beside it, a perfect picture of a rose, “Mummy’s Rose”.  Puppy dogs, rainbows, birds, friends, suns shining and dolphins swimming, all covered the sides.  There was so much colour.  A picture of the Eiffel Tower adorned the top of the casket and the most exquisitely painted purple, yellow and blue butterfly majestically graced each end.

A cold, horrid white coffin had been brought to life through Pippa’s bright, cheerful, innocent drawings and paintings.

The men closed the doors and drove away.  Tears streaming down our faces, James, Patrick and I went back inside our house; our home that now had one less member of our little family in it.

The next day, two years ago today, on the 2nd April 2015, over a thousand people attended a celebration of Pippa’s 11 beautiful years in our life.  They gathered on the lush green grass under a tree canopied blue sky in the beauty and tranquility of the botanical gardens.  They watched photos and videos of Pippa come to life on a 5-metre screen.  They listened to her brothers and me speak her eulogies.  The duck pond surrounded by weeping willows and with its lily pads and quaint cobble-stoned bridge formed a perfect back drop for the service.

Finally, as she was carried through the crowd and over the little stone bridge to a reading from Enid Blyton’s The Faraway Tree, one thousand people were fascinated and transfixed, gazing in wonder at the beautiful casket – my birthday present.

April Fool’s Day is my birthday and now, every year, I will cry if I want to.
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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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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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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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