Pippa Rea

Pippa's Journey with a Brain Tumour

A Birthday with no Birthday Girl

That’s precisely what it was.  Saturday 13th February.  The day when Pippa should have been jumping on my bed waking me up excited to open her 12th birthday presents.

Instead we woke silently and with no excitement.   We had what Pippa would have ordered for her birthday breakfast – pancakes complete with nutella and strawberries of course.  Thanks to a thoughtful friend of Pippa’s we even had a present to open.

The boys and I had a list to work through to get ourselves ready for the day.  I most importantly had to make Pippa’s favourite chocolate mousse for her birthday dinner dessert.  We needed to pack the car with things to take to the beach.  A picnic had to be made and a cool bag organised to keep the drinks and food cold seeing as we were going to be there all afternoon.  A birthday sign to make it a party of course was required.  Flowers for the birthday girl.  Chocolate Brownie.  The motions were rolling.

My phone was busy with texts and calls like on any other birthday. The rule in our house on your birthday is that the birthday person has to answer every phone call.  There was no birthday girl to do that.

The day was beautiful, the sun warm and the sky and the water at Port Fairy’s East beach were both crystal clear and breathtakingly spectacular.  The only thing missing was the birthday girl turning cartwheels on the sand and calling out to me from the water, “Come on mum, why don’t you come in for a swim the water’s beautiful!” when I know too well it’s a touch on the refreshingly icy side of chilly.   But that’s what she would have said with a cheeky grin on her face.

So many people came and went across the afternoon and I am incredibly grateful to everyone.  It really was a strategy to help James, Patrick and me cope with what was always going to be a difficult day.  Pippa described her 11th birthday as her best ever despite not being able to talk, eat or walk.   I think Saturday was the best we could manage for her 12th birthday.  It was in fact perfect, but…there was no birthday girl.  I felt numb and empty.

People were sprawled all over the sand, on the grass bank, in and out of the water.  Flowers were placed at the base of her memorial seat.  Pippa’s friends swam, surfed, played cricket, built sand castles, used her kayak.  At first everyone tentatively looked and marvelled at the seat but eventually the ice somehow broke and photos started to be taken of her friends sitting, standing and playing on it.

At one point I overheard some of the young boys standing around Pippa’s seat having a chat.  They were talking about death and what it feels like to die.  The result of this gorgeous conversation was that it doesn’t hurt to die and that it doesn’t matter how long it takes for you to die because when someone starts to die you go to the place where your dreams and memories are and that’s where you stay.  You feel only good things and you don’t know time.  And then they ran off back to the beach.  It was utterly beautiful and I don’t know if these boys came up with this on their own or whether one of them had previously discussed it with some wonderful parents.    Regardless, what I do know is that they certainly wouldn’t have been standing around a headstone in a cemetery or a plaque at crematorium having this conversation.  This simple, casual chat makes the memorial seat even more special invoking such raw and innocent discussions in children that will help them all deal with such a difficult topic.

Toward the end of the day darling little 4 year old Lottie came up to me and said, “Ginya, I’ve been looking all day but I can’t see Pippa!  I’m cross with her that she’s not here!”  I said, “Oh Lottie, when I went in for a swim before I’m sure I saw her.”  Together we looked up to the sky.  It was no longer clear as some whispy clouds were floating around.  We strained to see and eventually there she was – the faint crescent of the moon appeared in between the clouds.  Lottie was absolutely thrilled to see that Pippa hadn’t missed her birthday.  To Lottie, Pippa lives in the moon and she loves seeing her during the day time.  They are always special days for Lottie.

We came home after a long day in the sun a little tired and with presents and cards to open and read.  The day was not unlike any beach birthday party.  It was simply missing three very integral parts:

  • there was no happy birthday song
  • there was no birthday cake
  • there was no birthday girl

Saturday 13th February was Pippa’s 12th birthday but she will never be twelve.  Instead, she will always and forever be “Legs Eleven”.

Our thanks to everyone who made our day bearable.  I love this very special photo

IMG_2552

 

In memory of our beautiful Pippa Rea

13/02/2004 – 28/03/2015

A Nipper at Port fairy SLSC, Pippa loved this beach

Please enjoy the beautiful views 

sitting or playing on her surfboard seat.  

“Happy Memories”

Designed and kindly donated by Bamstone

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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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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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18 Months

26h June 2013.  Today is 18 months on.  Today is one day after Christmas Day.  Today is the second Christmas we have made it through.  Today is further than doctors had first hoped for 18 months ago.  Today Pippa is still here with us.

I’ve collapsed many times in the past 18 months.  The first was the first time I was told to be prepared for not much longer than 6 months.  The second was the second time I was told to be prepared for not much longer than 6 months.  Then there was 1st September when I was told there was nothing more that could be done or tried.  There have been times I have been told to prepare myself for the worst in the coming hours and days.  I’m not sure what number collapses they have been.  For three weeks in a row I crossed my fingers and my heart each day willing us to make it a few more days.  My heart is almost permanently collapsed.

Pippa is still here.  She ruled the monopoly board again this evening.  One day at a time and Pippa is still here.  Christmas Day, of course, was a milestone.  The next milestone is Pippa’s 11th birthday, but that’s a little way off yet.  One day at a time.

Thank you to many many people across the past 18 months……….

Thank you to every single person who contributed to fundraising that occurred in September 2013 helping us live Pippa’s number one dream of visiting the Eiffel Tower in Paris.  I made a promise to take her there one day sitting on the floor of the corridor waiting for one of many blood tests.  I will never forget that heartbreaking conversation.

Thank you to everyone who has sent a single thought in our direction.  Thank you to my many friends near and far, all of their friends and to new people and friends I have met along this journey.  Thank you to those across the world who read this blog and think of us.   Thank you to friends who drop by, ring, text and message.  It all helps keep me standing.  Thank you to anyone who has ever put themselves forward to spend some time with or do something for my boys.  They are lucky to have so many good men around them who care about their wellbeing.  Thank you to all of James, Patrick and Pippas’ friends.  Thank you to their school. communities.  Thank you to our family.

Thank you to James and Patrick for being the best brothers in the world, giving the best hugs, the best kisses and the strongest support.

Thank you to some of the funds and foundations that have helped catch my tears either down the phone or in person…….

Robert Connor Dawes Fund

Isabella & Marcus Fund

Leila Rose Foundation

Red Kite

Very Special Kids

TLC for Kids

Brainwave

Brain Child

Challenge

Camp Quality

Make-a-Wish

Kids with Cancer

Peace of Mind Foundation

Kyle Andrews Foundation

Royal Children’s Hospital Children’s Cancer Centre

Thank you to the doctors, surgeons, therapists, nurses, and hospital staff who have walked beside us and continue to do so. Thank you to Pippa’s oncologists at RCH and Peter Mac who have done the very best job they could, offered the very best treatment to a virtually untreatable disease and agreed wholeheartedly to do the further unproven treatment when I asked.

Thank you to Pippa who in the past couple of days has shed little tears with me behind the joyous front of Christmas.  Thank you for being strong and fighting so hard without ever complaining.  Not even once.   Thank you for sharing Christmas 2014 with us.  Your Presence is our Present.  I know you are starting to get saddened by the differences that have taken over your body recently.  I am still hoping this extra radiation is working and know that it ,combined with your strength and determination, is the reason we made it to Christmas yesterday.  As we reduce the steroids your muscles will grow a little bit stronger for a little bit longer and we can spend more time together.  Christmas is over now.  Let’s start planning your birthday party.  It’s not that far away, February 13th, we’d better start getting ourselves organised so we can look forward to it.

How exactly did we spend today, 18 months after I first heard the words Pontine Glioma?  With family of course……A few of the Reas gathered for a family reunion.  No better place to be today.

Some of the Rea Clan

Some of the Rea Clan

just a few of us Reas……

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Santa’s Little Helper

We have been receiving parcels which is always exciting, some very cute named Christmas stockings are hanging in our lounge room and a magical Christmas tree stands elegantly enticing endless comments from people who see it.  On Friday Pippa received another parcel and opened it.  Inside was a Christmas Teddy Bear.  She aptly named him Santa’s Little Helper or ‘SLH’ for short.  Geoffrey, Henry, Monkey and Harold have been carefully put aside to be re-cuddled after Christmas.  SLH has constantly been with Pippa since Friday and with him he has brought a little Christmas Hope and his own little magic……….

Santa's Little Helper

Santa’s Little Helper

Until Friday Pippa was focussed only on Christmas for everyone else:  She had delivered little gifts for her classmates, friends, family and the u18s basketball team.  Christmas shopping started on the day of our Christmas Sights Visit in Melbourne when she purchased her first of three gifts for James and Patrick. There are mysterious presents abound under the tree with “Love From Pippa” and by Friday she was completely organised ensuring that everyone around her would have a special Christmas from her.

Then Santa’s Little Helper came in the mail.  All day Friday she clung to him.  Saturday morning she woke excited.  At first I thought she was excited because we had decided we were able to go to our annual extended family Christmas gathering in Anglesea.  She was but that wasn’t what she was initially excited about.  Pippa needed to get ready for her Christmas.  She needed to write her Santa list.  Santa was coming in 4 sleeps and it needed to be done.  That very minute!  The list was typed carefully on the computer, printed, laminated, hole punched, placed in a folder and left under our Christmas Tree.  Yes, she’s her mother’s daughter; it was categorised and spaced out perfectly, but just shy of being put on an excel spreadsheet!  Only then could we leave for Anglesea – “Dougfest” would be 24 hours of fun with cousins, plenty of food, gifts, our annual raffle and a larrikin Santa handing out presents………  When we arrived Pippa was asked by Chelsea-Lee’s beautiful little face gazing up at her if would please go on the trampoline with her?  Pippa said, no she wasn’t going to be able to go on the trampoline today.  Later on in the afternoon though she was adamant she was going on the flying fox – and fly she did!  Complete with a merry band of followers!

We returned home to find that not only had Santa been to collect her list, but he had also left her 2 bracelets with magical powers made especially for her by his Elves!  Indeed, the magic of Christmas started to spread and Pippa’s face began to beam at the thought of Christmas Eve and Christmas Day.

Carollers rang our door bell last night………

We have done our annual Wishing Tree Shopping from the raffle James started 8 years ago…….

Shopping for the Wishing Tree

Shopping for the Wishing Tree

Pippa didn’t put a pony on her list, but one turned up for her to ride and pat………

Nice to meet you, Biscuit

Nice to meet you, Biscuit 

Two weeks ago Christmas Day could not come quickly enough.  Now Pippa seems a little bit stable,  I am continuing to slowly and carefully drop her steroids and 2 days out Christmas is finally within our reach.

It’s now beginning to start feeling a lot like Christmas around here and thanks to Santa and his little helpers Christmas magic is shining through Pippa………

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Good Doses of……

This week we have needed good doses of sunshine, smiles and laughter.  Patrick’s antics keep us continually entertained and one day his amazingly, unbelievable, you-will-never-believe-how-I-can-do-it “magic tricks” with uno cards had our gorgeous nurse, Jessie, in stitches whilst we were waiting for Pippa to come out of treatment.  Jessie sees us most days and she loves spending time with our little family.  Our good doses this week have come to us in the form of Melanie, another requested visit from Yarra & time with the Spence family.  Sometimes you need just the right fit and Tuesday night the Spence family was the perfect fit for us.

I’m feeling a bit of a kissing theme going on this week………….Why not?  Who wouldn’t want to smooch gorgeous little Pippa?……….I tell Pippa kisses are magic.

 

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