Pippa Rea

Pippa's Journey with a Brain Tumour

Mar 5

A Science Lesson

by Virginia Rea

Just like any other oncology patient, Pippa is regularly required to have blood tests.  The first one coincided with her very first chemotherapy tablet way back in July:  It was not a very happening time for either of us!  Pippa was scared about having the test and I was resentful and emotional about having to hand over the chemo tablet, “Please darling, don’t cry, it won’t hurt and anyway you need to stop crying so you can swallow this cute little peach coloured capsule…….”  Probably a memory that will stay with both of us for different yet similar reasons.

Blood tests these days are a breeze.  Most often we are at the Royal Children’s Hospital where many of the staff know us as we have been so many times.  Today we needed to have blood taken locally which for one reason or another hasn’t happened that much to date.  Local blood testing came with a bonus thanks to our friend who is in the lab.   Pippa had her very own educational tour and learnt what happens on the other side of the needle.  Just another way to help her understand and process everything that is happening.  Oh yes, and bloods were all good so that was an added bonus!

Collecting blood on any normal day at RCH
Taking blood in Warrnambool means helping in a real life science lab!
Going through “Ruby” to get analysed
Here’s what happens to your blood
Watching blood……
Let’s just make sure that’s the right blood
Checking out what the nuetrophils and the platelets look like!
Double Checking

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Feb 4

Patience

by Virginia Rea

For the third cycle now Pippa’s blood counts are too low for too long.  It’s not a major concern, just a small and apparently rather interesting problem that needs solving.  Although now behind on her treatment plan, she continues to be healthy, happy and full of life.  As the plan is written in sand anyway I’m not to be  bothered by it especially as her doctor is not – he just has to figure out the best way to overcome it.  We will make the drive back again to Melbourne on Sunday ready for Monday morning and more blood tests that will hopefully allow chemo treatment.

To think that I am even using the phrase, “hopefully chemo treatment”!

On the upside, Pippa’s MRI report is one, singular word – Stable.

I don’t think I have ever used a singular word to describe anything in my whole life!  I certainly haven’t used a single word to “do” anything!  This one little word doesn’t tell me a whole lot but apparently it is the best outcome for an MRI result and more importantly, it screams to me patience at a time when I’m getting really itchy feet.  I guess the weekly drive down for low blood counts is also teaching me the same lesson.

Seven and a half months ago I literally collapsed into the the doctor who delivered me the very first piece of numbing news.  I still cannot believe the daily conversations I now have, the words I have to learn and the information I have to process.  I had to be patient to get a diagnosis that could be worked with and treated, patient to wait for the steroids to do their job, patient through radiation, patient for an MRI scan that could be read and now patient to get a consistent treatment plan and continue with what lies ahead.   Pippa, although still not missing a beat, is the most patient of all.  Never complaining about numerous appointments, treatments, tests nor the thousands of kilometres that we travel.  She happily went off to school on the first day of the school year full of excitement to see her friends and teacher but completely OK that she would miss the second one and most of the third.

Pippa (along with her understanding and patient brothers as well)  is certainly teaching me some life lessons.

School for 2014

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Jan 25

A Little Driving Holiday

by Virginia Rea

After the last chemo cycle we decided to pack up the car and take a little driving holiday visiting lots of wonderful friends.  A blood test on the Monday morning to check all was OK and we were on our way.  Also coming along with us was the recent heatwave!  We started by taking the ferry from Queenscliff to Sorrento, then went across the peninsular to Ballnaring, up to the Yarra Valley, across to Seymour and then back down to Melbourne and home.

Part of Pippa’s treatment plan is actually to be as normal as possible and have fun.  Her oncologist has spent a lot of time with Pippa and quickly realised  how much she gets out of life.  We often seem to be sitting in front of him with a bit of a smirk on our faces knowing that he will roll his eyes, shake his head at her and just end up saying, “Well, did you have fun young lady?”

Our next visit will be no exception.  Pippa has listed her favourite things she did on our holiday……..

Going on the inflatable behind the boat at Sorrento

Driving the John Deer and riding the horse at Ballnaring

Relaxing in the creek and swimming in the dam at King Lake

Getting thrown around the pool at Tallarook

Rock Climbing in Melbourne

She scaled 18 metres with ease.  Her brothers were considerably impressed but I was not surprised at all to look around the room and only see one pint sized rock climber 3 storeys high!  Pippa has no fear and will always give anything a go (and is usually pretty good at it too!).

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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

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Dec 30

Sorry, No Pic of an MRI……..

by Virginia Rea

A full day at hospital today also included an MRI that we had not told anyone about.  I have quickly learnt that keeping a poker face and holding MRI appointments close to my chest is a much simpler way to deal with the anticipation.  Unfortunately, it also seems to bring secret tears as I sit through the scan.

The result however, has proved worth it.  Whilst reading an MRI like this takes many weeks of intricate comparison to the previous scans, Pippa’s oncologist was very keen to have an “unqualified”  look for himself.  He is happy and can see some positive signs in the pictures so far.  This at last (after 5 and a half months of surgery and treatment) matches something solid and medical on the inside with what we see on the outside.  It also, I imagine, motivates and confirms for him that despite the length, the twists and turns and the intersections without directionsthe road he is following is perhaps the right one.

I should have taken a photo of Pippa in the MRI tunnel to placate my mother who likes to see photos on every blog.  Better still, I should have taken a sound recording of the most boring 45 minutes I always have to sit and ‘vibrate’ my way through whilst Pippa gets to watch a movie.  I didn’t.  I thought instead about my grandmother, Nellie, and secretly thanked my cousin who recently reminded me that her strength is passed through all of us and she sees it so clearly in Pippa and I.  Then I shed a few tears.

Now, I’m drinking bubbles and Pippa’s celebrating with another, in some ways slightly stronger and more aggresive than previously, course of chemotherapy.

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Dec 25

A Very Special Christmas

by Virginia Rea

No chemo this week again because of low blood test results meant that Pippa could enjoy Christmas Day and eat anything she liked!  Chocolate Mousse for dessert is exactly what she ordered!

Pippa has decided that she would like to write this blog after having a  lovely Christmas day with friends and family……….

This fine Christmas day we were up very early looking for our presents from Santa. We ended up finding them outside. Mine was under my tree.  I got a dream catcher and also a very adorable bunny rabbit.  We found out the rabbit was a boy and called him Nibbles.  Patrick got a surfboard which he was very exited about.  He had his first trial this afternoon when we went to the beach.  And James got a Garmin running watch which he loved too.

We had 13 people coming for lunch they were Kylie, Jp, Ana, Armelle, Brian, Jo, Pep, Simon, Steph, Lachie, Georgia, Anne (Nan) and Tony.  For lunch we had salad, ham, potatoes, seafood and lamb cutlets.  

While we were having lunch mum made an anoucement to think about all the children who have to spend Christmas in the hospital because I was feeling very sad for them and hoping that they would still have a fun Christmas.  Anne (Nan) made some delicious fruit punch.

 After lunch Patrick ran the “Kris Kringle” it was only for the adults. You had to role a dice then what ever number it landed on either from 2-12 there was something you had to do.  When the kids got their presents I got a book and bop it XT.  

It was very hot outside so we decided to play inside. First we played connect 4.  Once Lachie, Steph, Georgia, Simon and Pep had gone Armelle and I played a game.  Then Ana came in and wanted to play with us.  Later Patrick came in and he decided he would play too.  A little later James came in then it was getting too squashed in my room so we went to the playroom. Patrick and James went because they had to do something.  So Ana, Armelle and I did some magic tricks. Then Ana and Armelle had to go home.  

I had a great Christmas day with all my family and friends. 

My Christmas Present from Santa
I set the table
A Special Christmas Lunch
My Family at Christmas Time

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