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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Ten Fingers, Ten Toes and a Cute little Button Nose

28 September, 6 months.  James decided to dig deep into his wardrobe and have a clean out.  A feat generally unheard of from a teenage boy!  I didn’t realise he was even doing it until he emerged carrying a box.  Apologising to me he handed me the box telling me he thought that in it were some birthday cards.  James’ bedroom used to be Pippa’s before I moved her into a room close to mine.  Close so I could hear her every breath every night.  And then, later,  I moved her even closer – right into my room.  James was correct.  In the box was a collection of birthday cards of Pippa’s.  I knew this without lifting the lid.  But lift the lid I did anyway.  To my amazement sitting on the very top of some of her birthday cards from when she was a toddler were two ultrasound pictures.  They were from twelve years ago to the day.  The hairs stood up on the back of my neck, my heart stopped and I burst into tears.

Ten fingers and ten toes.  As parents we all check and count with the same intensity of looking at a four leaf clover – making sure we’re counting correctly.  We listen for the first cry – a sign of good, healthy lungs.  We marvel at our newborn’s instinct to attach to the breast and suckle.  They scrunch up their little bodies so used to being curled up in the womb and then time stands still when they first lock eyes with their mother.  Perfect moments of bliss.  Pippa was all that.  Perfect in every way a tiny little newborn should be.  Perfect in the way that all mothers want and hope that their newborns are.  She was born at 39 weeks measuring 48cms and weighing 8 pounds 1 ounce.  ‘Short and fat’ I remembered my brother calling her!  She had an Apgar score of 9 at 1minute and 10 at 5minutes.  She breastfed immediately.  She slept perfectly.  She rarely (in fact I could almost say never) cried.  Pippa was utterly perfect.  A blessing to James, Patrick and me.  Utterly adored.  A treasure we only had for eleven years.

Ten fingers, ten toes, a cute little button nose and a time bomb ticking inside her brain.  I found myself wondering what if I had have known then? What if, at her 20 week ultrasound I knew what twelve years time was going to bring me?  Of course I would have not done a thing.  How could I not have a life full of Pippa for eleven years?  How could Pippa not have a life of eleven years?  Would have our lives been different if I had known what was going to happen?  They most certainly would have.  I know how I was for the 2 years I did know what was going to happen.  A living hell every time I shut my eyes.  I shudder at the thought of having to do that for 11 years.  I’m grateful that twelve years ago I didn’t know what lay ahead.  I would not have wanted that crystal ball.

I then found myself wondering about the next 12 years.  What would the crystal ball show if Pippa hadn’t had a time bomb in her head?  Would she grow up OK?  Unscathed?  The 6 o’clock news doesn’t give us much comfort for what lies ahead – fears for teenagers and young adults; and the fears for our daughters are possibly worse than those for our sons.  I found myself asking what if I just accepted the time bomb and alleviated those fears?  No was the very quick answer.   I would take any fear that I could possibly ever have for the future if it meant that Pippa was still here.  We can hold our children tightly and fear for their safety, their wellbeing and their future.  But I can’t hold Pippa anymore.  To be able to hold her, feel her, hear her, see her smile…far outweighs any fears that the newspapers and televisions can put in front of me.

Instead I have new fears.  Fears for me, James and Patrick in a life and a future without Pippa.  Fears for our wellbeing.  Fears for the scars that Pippa’s brothers will forever carry.  A tragic burden they should never have to endure.  Heartache.

Count as we might, superstitions or not, it turns out that ten fingers and ten toes cannot guarantee us anything.  Not life.  Not happiness.  Not health.

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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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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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Brain Cancer Research

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

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

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

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

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

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

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

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

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Public Notice of Thanks

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

Pippa Rea Thank You

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

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

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

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

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

My darling little girl…………

Love

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