Pippa Rea

Pippa's Journey with a Brain Tumour

A New School Year

I guess milestones, particularly those in the first 12 months, are going mean that I will inevitably get asked the same question over and over again.  That’s OK.  I know that it means people care.  I’ve come to understand that and instead of twisting and churning inside I simply answer the best I can at the time.  It’s still hard and I understand that it’s just as hard for other people to speak to me because I know they don’t know what to say and are scared of saying the wrong thing.  That’s OK too.  I don’t mind.  The best thing to say is to actually say something about Pippa.  Knowing that others do not forget her and also have fond memories is the best comfort I can receive.

How did I manage the Christmas and New Year period?  Well, yes, it was difficult.  We ran away to WA to my sister, brother-in-law and adult nieces.   That was the right place to be.  In fact, Christmas Day was manageable.  Of course there were tears and a lot of them.  In fact, at one point I looked around and the whole lot of us were crying.  I had prepared and strategised in the lead up and I think that helped get through what was a very difficult day.  Pippa loved Christmas.  She always methodically wrote Christmas cards.  She was chief present wrapper and decorator.  Just like any little girl.  She especially loved it when Christmas was at our house.  Boy did she have James and Patrick organised!

What I wasn’t prepared for though was halfway between Christmas and New Year.  That’s when it really hit me.  I’d managed Christmas Day but then what?  A new year was on it’s way and I would be starting it without Pippa.  With one less person in our family.  What did I have to look forward to?  What did I have to celebrate?  Neither an old year passed nor a new year coming.  You see, I didn’t want 2015 to end because it was the last year I was ever going to have a living memory of Pippa.  2016 or any year to come was never going to give me that.  I felt like that from now on each new year will just leave her further and further behind.  Over the holidays there were so many tragic deaths of children.  My heart went out to every one of those parents.  People often say to me they cannot imagine what I am going through.  I honestly don’t think there could ever be anything more painful than losing your child.

Now I find myself at a new school year.  A year that Pippa should be in year 6, excited about being a leader at school and looking forward to secondary school next year.  I try not to think about that but last week I had to go into school to collect Pippa’s tub.  Yes, you would think I had done that ages ago, but I couldn’t bring myself to do it last year.  I thought I would be OK because I had been to every day of school with her so there wouldn’t be any surprises.  I was wrong.  In the box along with her books and pencil case was her school report which had been put together with beautiful messages and pictures from her classmates.  A report that not only reflected Pippa’s ability academically, but showed me again how much she meant to everyone else and the incredible person she was.

Now everyone is back to school.  Parents shed tears as their children start prep, others swell with pride as theirs start secondary school, some are nervous that they will miss theirs terribly as they send them off to boarding school and Pippa’s classmates become the big grade six leaders of their school.  James and Patrick head into year 10 and year 8 but Pippa goes nowhere.  Patrick is not my youngest.  I will never get to send my youngest child off anywhere.  She’s already gone and she will never come home.  Not at the end of the day like most school children nor the end of the term like the boarders.

Pippa is never ever going to or coming home from school again.


Artistic Inspiration

Recently  I met Pippa’s class at the art gallery.  Pippa’s portrait is on display in a local competition.  It has been entered by her Teacher Aide who spent a lot of time with Pippa both in the classroom this year and at our home.  They would laugh, play games, find cool music apps, draw, paint, do assignments and of course her favourite school work – maths.  Pippa was very chuffed that she was capable of doing maths equations far beyond her years and Jeff always left our home with sheets full of math problems and numbers depicting the latest numeric patterns they were working on.  She even did this on her very last day.

Needless to say, Jeff, like everyone has been deeply affected by the loss of Pippa.  Jeff stays in touch which is lovely and along with registering her star on our behalf, he has put his feelings into two magnificent pieces of artwork.

We went along to admire his talent and the class of E1 then had some quiet time drawing or writing what they felt on paper. There were some attempts at replicating Jeff’s portrait, but there were also a lot of beautiful frangipanis drawn – art again inspired by Pippa!

Both of Jeff’s pieces are done with fine pencil and the detail is incredible.  This portrait is currently hanging in the Warrnambool Art Gallery until 16 August

Pippa Rea, Legs Eleven


I’m almost certain Jeff’s portrait received quite a few “people’s choice” votes that day!

Jeff is still entering the following drawing in art competitions around the country.  Every time I see it it takes my breath away – as someone said to me, they have never seen someone so recognisable from behind!  Good luck to Jeff on getting this piece of art displayed somewhere as well.


Jeff has written very moving and just as touching words that accompany these pieces:

Pippa Rea (Legs Eleven)

I’ve always thought that people come into your life for a reason. They come into your life and make an impact either large or small. You may notice, you may not. I am a teacher aide at a primary school, and this picture is about a special little girl who I supported at that school. She was a very active, friendly, intelligent and an inspiring girl who liked to dream big.

When I first met her I knew she was special. I knew she was in my life for a reason. This special little girl was fighting a big battle with terminal cancer. Everybody thought that she didn’t have long to live, but I was determined and motivated to help her fight it and become better again. As the weeks went by her illness expanded, leaving her unable to walk, talk and hear very clearly. This didn’t stop her though, she was still eager to go to school and hang out with her friends and do school work. On her days when she was unable to make it to school, I was assigned to teach her at her home. It was a very challenging and different experience for me, however, I enjoyed every moment of it. This experience helped me grow as a person by giving me courage and inspiration to live life to the fullest.

Away from school, she liked to play music, especially drums. Unfortunately, with her illness and lack of movement, she wasn’t able to play anymore. However, she could still use her right hand, so I downloaded some drum apps on her iPad so she could still play. She also liked to paint and draw, which was great because it was something I liked to do and that we could do together.

Early this year, she passed away peacefully in her sleep. I was beyond devastated. When I received the msg on my phone, I was right in the middle of the city (Melbourne Central). Surrounded by busy city life, the whole world seemed like it had stopped.

This picture is explaining about this special little girl and her next journey. The ripples in the water are representing multi-universes and different dimensions. She is walking through these dimensions trying to find her own special place. The picture fades out into the distance and is representing the unknown, and that is where her next journey begins.

This special little girl has put a mark on my life forever, and has inspired me to do bigger and greater things. I will always remember her courage and strength, wherever I go and whatever I do. Every time I do a drawing, go for a surf, play music and even going on adventures. She will always be there in my mind and I know she is out there watching over me and everyone else.

Jeff is also the owner of the grey haired, blue eyed husky – precisely what Pippa has always wanted for her 16th birthday!  Exactly the gift I as mother of a long legged, beautiful individual was going to be very happy to give her!!


I am proud to be Pippa’s mum and proud of the inspiration she has unknowingly bestowed upon others.


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.


Good Vibes Only

Good Vibes Only is what I would like and what I need but they seem to be evading me.  Last week Pippa noticeably declined.  Not in a big way, but there were slight, subtle changes that I knew were signs.  First she woke up one night when her hearing changed again.  She was terrified and scared; the empty, hollow sound of vacant space within her ear nerves.  Nightmares began.  They were always the same and she clung to me with force.  Next her breathing became worse which we managed (and when I say we, I refer to the constant medical support I have) with symptomatic medication.  The medication is also helping with her anxiousness and her nightmares. I am open and honest with her but there are things she can’t mention or talk about and even though I am with her every minute of every day she is scared.  She has every reason to be scared – she’s a ten year old little girl facing a demon that even adults shouldn’t have to face.

Her breathing now is ok and, for the time being, under control but her balance, walking and speech have all deteriorated to some degree and now these symptoms seem to change hourly. At the same time though her facial palsy, smile and eyes are better; having improved somewhat.  For a while I have been treating both eyes for not closing or blinking properly, now it is back to only being her left eye that is affected and only slightly. Currently I no longer have to thicken her fluids but for how long I’m not sure.

It is a confusing and hour by hour day that we live.  For a while Pippa was best in the mornings; refreshed and rejuvenated from sleep.  Now that her symptoms are changing so do our days – all the time.  At times she is now better in the afternoons because she is managing and adapting to her weaknesses across the day.  Other days she is worse in the afternoon because she is tired.  She can also be worse in the mornings if the pressure on her brain is greater after lying down.  Three days ago she could barely walk the first part of the day yet in the afternoon she decided that she would walk not “roll” (our reference to having to use the wheelchair) through the supermarket.  She held mine and Patrick’s hands and the next thing I knew she’s doing lunges up and down the aisles.  Very clearly she said, “What? This has got to be good for my muscles mum!”

Pippa’s determination and “I can do it myself” attitude still shines through.  For ten days nowI have been doing twice daily physiotherapy with her. The steroids are now at a low enough level that perhaps we can start to rebuild her muscles.   I am doing all that I can.  I can help her muscles become stronger, but I can’t help her nerves that control her balance.  Physio also helps her mentally to know that although it is a routine, it is beneficial and purposeful.  On warm days we go to a friend’s pool where, in private with her brothers at her side, the weightlessness means she can run, walk, swim in the water……….essentially it means she can be free.  It’s really hard for an outdoors girl who in summers gone by has lived at the beach and loves the ocean a to not be able to walk on the sand or even consider standing upright in waves on hot days.  Pippa, not unlike other children, lived most of her life until now in bathers.  With nostalgia in her voice she reminded me on the hot day recently of days she has spent at the beach boogie boarding all day long being able to take relief from the heat in the waves.  Now she is unlike other children and she feels it.

I don’t tell Pippa I know what she’s feeling.  I don’t.  I can’t.  Only she knows.   Instead, I tell her I understand.

We still try and do something fun every day.  But fun is becoming more and more limited due to her speech and walking.  The past two days it was a trip to the movies.  The three flights of stairs we had to climb to Cinema One on both days (of course!) was ridiculous, tricky and tiring.  In this day and age I found myself wondering why and how there is no elevator?  Today it will be a visit from beautiful friends driving a long distance to see us for lunch.  They will bring with them hugs and love for all of us.  Afterwards a swim in the hot afternoon. Then maybe more movies later in the week – perhaps downstairs may be helpful.  At some point Pippa has a shopping list for school she needs to fill.  We will roll, I know, but it’s good to look forward to and plan for normal life when the life surrounding us is so abnormal.

Last year on the first day of radiation, the first day of chemotherapy and the first day Pippa had to knowingly have a blood test  I wore a t-shirt I had been given.  It had a picture of the Eiffel Tower on it and it said Follow your Heart.  Pippa is my heart.  This year in Paris I bought another t-shirt.  This one has a photo of the Eiffel Tower taken from the exact spot we picnicked.  It says Good Vibes Only. You don’t always need a plan.  Sometimes you just need to breathe, trust, let go and see what happens. 

I have no more plans.  I have trusted everyone that has helped us on this journey.  Sometimes I can’t breathe.  I’m not ready to let go.  I don’t want to see what happens.  My wish for 2015 is simple but elusive.  I would like to have Good Vibes Only.



Today Pippa’s oncologist feels she has plateaued and is perhaps stable – I’ll take that.  Tomorrow instead of having an extra day of treatment he has told her she can go on whichever rides she likes at the Challenge Christmas Party!  When I queried him about the head spining, jolting rides she will undoubtably seek out he shrugged his shoulders and said, “Who cares, maybe she shouldn’t but let’s just let her have fun.”  He’s right, she’s been to the edge, a fun ride can’t do any worse than that.  Pippa’s in bed nice and early and is looking forward to it.  The poor little darling is so tired each day.

Today we had invited Pippa’s teacher to come and see her so she could show her around the Royal Children’s Hospital.  This was something that Pippa herself had suggested a while ago but it never eventuated as our treatment and visits ended before we could arrange it.  Thus, we decided to do it this time around.  In hindsight it would have been a wonderful visit to do much earlier in our journey.  As Pippa said, “then she knows where I am and what I’m doing when I’m away from school”.

Yesterday I needed to fill another script of steroids for Pippa which I did whilst she was on the radiation table at Peter Mac.  When I was called to collect the script the hospital pharmacist asked to speak with me.  He was quite concerned about the high dose of medication and knew it had been for a prolonged time based on how recently I had filled the previous script.  He was checking that I understood how to take the medication, that I was counteracting some of the side affects with other medication and wanted to know how long I had been on that high a dose and if I knew how much longer it would be required.  He was being very thorough but also very kind.  I reassured him that I understood everything and that yes, we were having occasional issues but I was essentially managing everything as best I could with appropriate medications.  He was comfortable with that.  It was not until the end of our discussion when I corrected him that my script was not for me but my rather petite 10 year old daughter.  He was speechless.  We shared a look of sadness and I quietly left clutching on tightly to the bottle in my hand with tears welling up in my eyes.

Pippa has been on this dose of steroids for 2 weeks now.  It is almost twice as much as the highest dose she was on last year and that was only for (I think from memory) about 5-7 days at the peak of being on steroids for approximately 5-6weeks.  Dexamethasone reduces the swelling around the tumour so the radiation can have a chance at working.  Neither of her oncologists is ready to risk taking her down from this dose just yet.


A Story of a Little Girl and some Very Big Boys

The Warrnambool Seaside Basketball Tournament was held on the weekend.  Some friends had organised a Milkshake and Pancake stand to help raise money to send their team to the Nationals in Canberra…….. A little girl decided she would help sell milkshakes and pancakes and sat tirelessly for hours on Saturday doing a very good job of taking orders and money.

Pippa and Andy

Pippa and Andy

Eventually her mum suggested she have a break and sit down for a bit and watch a basketball game.  She was torn, but she agreed only on the condition that she could return to her post.  Off she went to watch another team of friends – the under 16 boys teams. On returning to her post the selling area seemed full of the big u18s boys taking their turn at duty.  No, where there is a will there is a way and there was still room for the little girl to get in there and help!  Which of course leaded to lots of cheeky fun with the big boys.

Anyone for a Milkshake?

Anyone for a Milkshake?

When it was time for their next game, one of the big boys suggested that the little girl should come with them and sit on the bench.  That was the start of an incredible bond………

Walk with me Pippa

Walk with me Pippa

The little girl sat on the big boys bench for every game.  On the second day of the tournament, the little girl  didn’t sell any milkshakes, she spent every minute being part of the team on and off the court.  She sat on the bench and received her quota of pats on the back and rubs on the head as the big boys were subbed on and off the bench alongside her.  She handed out the lollies in the breaks.  In the huddles if she found herself on the outside a big arm would come from somewhere and pull the little girl into the centre.  She put her little hand in with their big ones for the motivational chant before they would run onto court.  In between matches she just ‘hung’ with the big boys and had fun.

The big boys won their under 18s grand final and the little girl was thanked for the part she played in their team and received her trophy.  The little girl is very proud of her trophy and it goes everywhere with her.

The mums and dads were proud of their big boys and the way they included the little girl with such kindness and warmth.  The little girl’s mum’s heart was touched and she is very grateful to the big boys knowing that they made a beautiful and selfless impact on the little girl.  It goes to show that you don’t have to be a famous sports person to be looked up to.  On the weekend, The Warrnambool Seahawks had an under 18s team of heroes and the little girl spent the weekend admiring the big boys and being part of their basketball team.  She was thrilled.

Slam Dunk....with a bit of help

Slam Dunk….with a bit of help


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