Pippa Rea

Pippa's Journey with a Brain Tumour

Aug 20

There’s a Monkey in Pippa’s Chair!

by Virginia Rea

Recently Pippa’s teacher and I were searching for resources to assist not only Pippa and her teacher, but also her class and school community when necessary.  Among other information and support, we came across a program called Monkey in My Chair.   A phone call to the organisation Missing School resulted in  a connection to the Cure Starts Now who manage and distribute the Monkeys in Australia.

Pippa’s Monkey (aptly named, Monkey) arrived yesterday complete with his back pack full of extra information and ideas, a picture story book to explain his purpose and a “Monkey Junior” to stay at home and go to hospital with Pippa.  We thought before rushing into things it would be best to make sure that Pippa and Monkey got along.  His arrival was perfectly timed to test out his dancing skills………..

Getting along so far……..
Hanging around on the bar watching…….

After passing that with flying (dancing) colours there was no doubt that he would easily slot into class so off he went to school today for his introduction to the rest of D4 and his first day at school.

The introduction
Reading the story about Monkey

Apparently, Monkey likes to sit very still in class, is a great listener and his long arms and legs are perfect for giving hugs.

Monkey will get straight to work and sit in Pippa’s chair while she is away Thursday to watch Patrick and his St Joseph’s team mates play in the State Football finals and then again on Friday when Pippa is in hospital for some surgery on her eye to tighten and loosen the muscles.  The aim of the eye surgery is to hopefully give her some single  vision (instead of always seeing double) by tightening and loosening the eye muscles.

Lets hope Monkey doesn’t monkey around in her chair while she’s away and get up to mischief!

 

Fun Stuff

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Jun 27

12 Months with a Lump

by Virginia Rea

Yesterday was 12 months since an aggressive, inoperable lump was found growing inside Pippa’s brainstem.  The ball started rolling and the domino started falling; fast……..

12 months later and I cannot believe the journey we are on is real.

People say to me, “I can’t imagine what you are going through.” My answer is always the same, “Neither can I.”

It is not something you can ever imagine. It is not something you can ever comprehend. It is what it is and you simply do the best you can. You enter a state of just being. Your perspective on everything changes. You become calmer yet you are more on edge. You learn patience yet you worry incessantly. You live each day in the day and for the day taking the day as it comes  and dealing with it then not knowing or thinking about what lies ahead.

12 months on and these are some things I have come to know………..

I know our oncologist is one of the best in the world at what he does and I am indebted to him for his persistence and doggedness 12 months ago

I know we have come a long way

I know we have achieved amazing feats

I know we have a long uncharted road still ahead of us

I know that statistics are irrelevant

I know radiation and chemotherapy are horrible but necessary to help fight the fight

I know I will never get used to handing over chemotherapy drugs to my daughter

I know that love is abundant and you can never be full of love nor can you ever run out of love to give

I know that a little sister can be her brothers’ best friend

Most importantly, I know that Pippa has the most amazing constitution, inner strength and wisdom beyond her years. Her attitude to life, is infectious and her whole approach to the past 12 months is inspiring.

 

 

 

Updates

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Jun 18

Winter Blues

by Virginia Rea

A friend of mine once told me she thought the “Winter Blues” were just a myth until she met me.

I’m not a cold weather person. I don’t like layers of clothes; I am much happier in shorts and a t-shirt with the sun shining warm on my skin.

This week has seen Pippa complete her 8th cycle of chemotherapy.  She only had one uncomfortable night on day 2 but we managed that with some stomach cramping medication and our normal chemo routine of massage, healthy food, baths and of course, cuddles from not only me but James and Patrick as well.

I was perhaps exaggerating how cold I was during the southern WA cold spell a couple of weeks ago – I’m now feeling that was warmish…….  This week Victoria has seen the weather change to real winter weather  and along with it (and during the chemo cycle) came a cough for Pippa.  It started small and only at night time.  It wasn’t bothering her much but listening to it I knew it was going to become nasty.  I watched and waited.  On Monday it turned and she couldn’t stop coughing.  I knew that based on the last cough she would end up in hospital but wasn’t sure whether I was supposed to wait for that to happen or if there was something I could actually do.

Yet again I rang the Royal Children’s Hospital Oncology department for help and advice and then off we went to visit the GP.  My suspicions were confirmed and the GP gave us some antibiotics in the hope that we were just enough ahead of the infection to help her compromised immune system fight it before it got the better of her.

The first night on anti biotics I spent popping ice into her mouth so she could sleep.  The second night I gave her strong pain relief which also acts as a cough suppressant because she has pulled all her stomach muscles from coughing.  So far the anti biotics have supported her and her immune system is holding up instead of shutting down.  She’s happy enough within herself but she can’t go to school.  We still went to dancing yesterday which in itself was good medicine – some lovely light movement to some beautiful music that of course brought an emotional mix of tears, smiles and laughs (to everyone but Pippa, she’s just the smiles and laughs part).

Fingers crossed Pippa and her immune system can hang on and win this mini fight………

This is going to be the longest bout of the “Winter Blues” I have ever had.  Summer with its warming, happy sunshine can’t come quickly enough as far as I’m concerned.

Updates

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Mar 27

9 months in

by Virginia Rea

Yesterday was 9 months since a lump the size of a golf ball was found inside Pippa’s brainstem.  Our options have been nothing other than to kill it and Pippa’s doctors have attacked the tumour as aggressively as it attacked her.

The anticipation, anxiety, trepidation, stress and worry leading up to an MRI scan is unbearable.  Not knowing what is going on inside, but knowing that soon you will be updated rips you apart in every direction.  Holding all that together on the outside is exhausting.

Yesterday evening Pippa’s oncologist rang me.  He was sitting in front of Pippa’s scan from the day before and could easily see a shrinkage in its size.  Death to tumour is our ultimate goal; shrinkage to tumour is an unexpected bonus!

We have a very happy little family in our house at the moment but we all know there is still a long path ahead of us.  And just to remind us poor Pippa has spent the night with another sore tummy and then provided a slight interruption to writing this blog this morning for a vomit.

For the time being I feel that we are one step ahead of the tumour and I can’t wait to see the pics for myself next week.

 

 

 

Updates

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Jan 28

Much Needed Research

by Virginia Rea

Today has been a cancer research themed day.

On Australia Day Pippa was the VIP guest at a fundraising event in Warrnambool.

This understated  little event called Kick-It Down Under was held in aid of the Royal Children’s Hospital Cancer Research.   The second time it has been held in Warrnambool (the only times outside the USA), it is part of the Jeff Gordon Children’s Foundation raising much needed research money across the United States for Paediatric Cancer.  The game (Kick Ball) is similar to baseball but with a large rubber ball that is kicked.  I had to do a bit of googling to work it out but my children tell me in Australia they call it “Boot Ball” and play it at school and with friends in the street.

The participants of the game were the Australian and USA Sprint Car drivers who were in Warrnambool for the Australia Day Long weekend Classic.  This is about where my knowledge of all things sprint cars starts and ends, but I think that this particular meet may be the biggest (should I say in the world? I don’t know, the Southern Hemisphere perhaps sounds pretty safe).  Pippa started the game off with a “pitch” and then also kicked and ran for both teams.  A fun experience!  Today was the cheque presentation to the hospital.

Later this afternoon we also went to meet the family who have started Robert Connor Dawes Fund.   In memory of their son,  brother and friend, this group are campaigning for more brain cancer research.  They are also the inspiration, motivation and support behind Pippa’s yoga and music therapy through her radiation and now her continued yoga therapy in Melbourne.  It was a little bit confronting for me and I was quite apprehensive.  Liz has been on the other end of a text message for me and I felt I wanted to meet her.  I’m glad I did but I am particularly glad that they were abe to meet Pippa.  I applaud them for all they are doing and for speaking up  loud for brain cancer research and hope that by meeting Pippa their fight will be inspired further.

Updates

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Jan 22

Coping with Chemo

by Virginia Rea

Pippa’s 12 month chemo cycle is supposed to be 5 days on, 3 weeks off starting every 4th Monday.  The late drop of bloods in the 4th week of the cycle however has meant that this has not been the case and with each cycle we have had to wait until Pippa’s blood test results are at a level where it is safe for her to receive chemotherapy.  The outcome of this though is that it has made her behind on her 12 month, 4 weekly cycle and thus, this is why her doctor is adjusting her doses to try and enable the chemo to be taken monthly.

This of course is all written in sand anyway and lead by Pippa in how she responds and copes with the chemo and results of current and future MRIs.  Thus, we are zig-zagging along learning as we go with not really any  guide book to show us the way.  But that’s OK we seem to be managing quite well.

The first day of Pippa’s last cycle was the second last day of 2013. After that night I was definitely not looking forward to any form of New Year celebration at all.  I gave Pippa the 2 (new levels of) doses of chemo and within 1-2 hours she was in all sorts of pain and discomfort along with awful waves of nausea.  Needless to say, Taylor Swift and heat packs were called upon.  Her body was aching and he tummy was twisting in knots.  I could see the hurt in her eyes.  She was exhausted from the day anyway so curled up in a ball while Taylor Swift sang her to sleep but she tossed and turned all night.

The next day I decided that I would have to resort to using the really strong painkillers I have in case  the side  affects of chemo become unbearable.   Pippa is so strong; she didn’t want them on the first night but I couldn’t watch her writhing like that again.  We had stayed in Melbourne due to our long day at the hospital and driving back I thought like I always do.  (A lot of thinking is done in the car while Pippa sleeps. )  I hadn’t been expecting the pain to be so extreme the first night and wondered what I could do to help.  I decided to put in place a routine for the next night.  I knew that once we need to use the painkillers we have reached a threshold so to speak and there is no margin for adjustment in treatment if her doctor needs to do so.  

Day 2 of the cycle and at 4.45 I gave Pippa her first dose of chemo, at 5.15, her second, at 5.45 we ate a healthy dinner of protein and vegetables.  After dinner she had a deep, warm bath.  Pippa then stepped out of the bath and onto a massage table for a 45minute massage and then into bed.  This meticulous routine was followed for the remainder of the chemo that week and Pippa did not have even a hint of pain.  Most mornings she woke with a sore belly, but that has been normal and even continues for a few days after she finishes the chemo. That pain is easily fixed with a heat pack.

Having been able to cope with the different dose of chemo in this way means we are not at our maximum and if we need to get more aggressive the room is there to do so.  The pain killers are still up my sleeve, I’m not afraid to use them but I am fully aware of what I am dealing with.  Pippa is taking it in her stride and by me changing the way I help her do that we are still well and truly on the front foot.  Hopefully we can manage the next cycle in the same way.

Massage
Dinner – simple and healthy

Updates

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