DIPG | Pippa Rea

Pippa’s Muddy Mud Cakes

by Virginia Rea

Today at the end of what should be Pippa’s 15th birthday I feel I have more questions than ever. Most of them are wondering and searching for answers that will never be. Wonder at how Pippa, the 15 year old teenager, would celebrate her birthday? Wonder at what subjects Pippa, the 15 year old school girl, would have chosen this year? Wonder at what sports Pippa, the 15 year old athlete, would be playing? Wonder at what Pippa, the 15 year old young lady, would be like. How tall would she be? What clothes would she be wearing? Would her friends be the same as four years ago or would she have new ones? Would she have a part time job? Would she have spent endless summer days at the beach? Would her hair still be long?

Why??????

Another day and another birthday passes though and I have no answers. Not a single one. I know Pippa the 11 year old. Pippa the 15 year old only exists in my imagination with her future never to be told.

Pippa was famous for making chocolate mud cakes on birthdays. Or for Easter. Or anytime she thought would be a good time for chocolate mud cake! She was often asked for our recipe. So I thought that on her birthday, I would make and share her recipe for chocolate mud cakes – most often topped with a Malteser.

Pippa’s Muddy Mud Cake(s)

250g butter, chopped

250g dark chocolate, chopped

3/4 cup caster sugar

20ml whiskey

1 1/2 cups hot water

1 1/4 cups self raising flour

1/4 cup cocoa powder

2 eggs, lightly beaten

1 tsp vanilla

Preheat oven to 160
Sift flour and cocoa together
Melt butter in a medium saucepan
Add chocolate, sugar, whiskey and hot water
Stir over low heat until chocolate is just melted and mixture is smooth
Gradually beat flour and cocoa into chocolate mixture using a wooden spoon
Add eggs and vanilla and beat until well combined
Pour into a buttered and lined 24 cm tin (or cup cake patty papers or mini cupcake papers)
Bake for approximately 50 mins or until a skewer comes out almost clean (shorter if smaller cakes)
Stand in cake tin for 10 mins before turning on a wire rack to cool
Ice with chocolate ganache and top with a Malteser!

Mud Cakes but no Birthday Girl
Easter Mud Cakes, 6 years ago….

Updates

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What a Little Star

by Virginia Rea

Chips and Trains the greyhound named for and by Pippa yet born nearly 18 months after she passed away is proving himself to be a surprising star. Our expectations for him were never anything more than to run in Pippa’s memory, with the racing name she had chosen, to create awareness for children’s brain cancer and hopefully raise a little money for research at the same time.

Pippa was so proud of every time she went out to the kennels to help Chris and Linda with the dogs, especially the pups. It was her job. In November 2014, a week before Pippa started needing to use a wheelchair we were at the Royal Children’s Hospital. She was getting blood tests, choosing a wheelchair (for the inevitable) which she was not happy about at all (until James and Patrick showed her all the fun that wheelchairs could provide) and getting fitted for a radiation mask at Peter Mac for the second time in her short life.

Testing the mask holds her head still for Radiation

Stickers – an attempt to make it look…nothing makes this mask look good.

Wheelchair Fun

Walking through RCH we saw Ricky Ponting. Should we go up and say hello and ask for a photo? Why not? We could ask him about cricket and tell him about how much Pippa’s Tony enjoyed cricket. Pippa however had other things she wanted to talk about… We respectfully approached him and said hello asking him if he would mind having a photo. Before cricket was even mentioned Pippa happily told Ricky that years earlier she had patted and looked after his dog at Linda’s kennels. Not exactly the comment he was expecting from a 10 year old girl at all! We eventually had the mandatory chat about cricket and he also talked about the Ponting Foundation and mentioned how proud he was to support the Murdoch Children’s Research Institute. Little did I know then that I would now be so closely connected with Murdoch via Pippa’s Trust we hold at the Tumour Tissue Bank. The surprised smile on his face when Pippa told him about looking after his dog was just priceless – it will stay with me as one of our many memories of Pippa!

When Chippa started racing in May Linda sent me a photo of a beautiful drawing that Pippa had done one day to leave in her kennels. It’s perfect. It shows the correct layout of everything. The kennels, the nursery were the pups are born and cared for until they’re old enough to go outside, the house, the van and even the gate that has to be kept closed! I particularly love the detail of Pippa and Linda drawn there looking after the pups and equally the names of all the pups and their mum. It must have been one of the first litters she wrote names for I think.

Chips and Trains is now the 2018 WA All Stars Champion and the 2018 WA Young Stars Champion. I just love watching all his winning races, but I do especially enjoy the All Stars Final – in the Red #1. he doesn’t give up!

Even though we did not start with any expectations at all, he is first and foremost running to raise awareness in Pippa’s memory. Brain Cancer kills more children than any other disease. 80% of children will die within 5 years. 90% of survivors are left with lifelong physical and mental impairments. Children with a DIPG (the type Pippa had) have an average survival of 9 months. These statistics have not changed in 30 years meaning Pippa did not even have a chance. The odds were not in her favour at all. These odds need to change.

Awareness = Money = Research = Better Outcomes = One Day a Cure.

For donations made in Pippa’s memory…

RCD Foundation Brain Cancer Research

Chips and Trains is providing us with a little bit of fun and happiness – we are grateful for this and enjoying his ride! Pippa would be thrilled that Chippa is such a lovely greyhound and that he is running around under full moons and fireworks winning races in her memory. She didn’t want anyone to forget her; she was so scared that would happen. She would love that people who have never met her have now come to know her through Chips and Trains. She would love that people love him, follow him and cheer him on. She would love that he’s putting smiles on faces. She would especially love that Chippa seems exactly like her – a beautiful personality, affectionate and always wanting cuddles, everyone’s friend and a bit of a free spirit with a love for running!

I know that if Pippa were alive she would be ringing Chris and Linda every day making sure someone was cuddling him for her. What a little star he is with a special pair of angel wings on his back!

Chips and Trains “Chippa”

Fun Stuff Memories research Updates

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AIM BRAIN and Pippa

by Virginia Rea

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.

Connor’s Run this year is on Sunday 17^th 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.

brain cancer research

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Blooms of Yellow

by Virginia Rea

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.

The bulbs Pippa planted in 2012 – each clump starting from one bulb

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.

Grief Memories

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How I Dealt with a 12 Month Anniversary

by Virginia Rea

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.

Day Oncology at Royal Childrens Hospital

A Sprouting Bulb

In the Entrance Garden at Peter MacCallum

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…

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.
The potting mix will look very light brown if dry and almost black if its damp
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.

Grief Updates

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A Birthday with no Birthday Girl

by Virginia Rea

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: