Pippa Rea

Pippa's Journey with a Brain Tumour

12 Months with a Lump

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.

 

 

 

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Winter Blues

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.

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Opportunities & Memories

With Pippa being so well the past few cycles I decided it was a good opportunity to travel west and visit my sister and her family in WA.  Pippa’s oncologist agreed and gave us medical clearance to leave shortly after her last chemo cycle. Things don’t always run smoothly though and for the 2 days prior to us flying out Pippa started some random vomits.  Not uncommon for oncology patients but most certainly uncommon for Pippa.  Advice from her oncologist was that the vomit cycle needed to be quickly broken before it set in and became a habit.  Not good.  His advice and preventative actions worked and we headed off vomit free (always a good option!)

It was so ridiculously cold and wet in Mandura that we had packed everything from beanies to bikinis!  Beanies were needed when we camped out one night to watch bilbies in the cold and the rain.  Pippa also spent a day helping Linda look after the tiniest little 2 week old greyhound puppies.  A long day but she loved every minute of being with all the dogs and helping out.

Unusual for me, I didn’t mind about the cold because we were there to spend fun times with family.  The other reason I didn’t mind about the cold weather in Mandurah was because we had decided to take an opportunity and create some memories – we were heading to Broome for a week!  7 days of red dirt and beach in 34 degrees!   We were lucky to have a beautiful house complete with a pool to base ourselves from, a 4wd to keep James happy and lots of things to do:

We visited a pearl farm and learnt how pearls are crafted;

We watched a movie at the historic 90 year old outdoor cinema (complete with jet taking off directly overhead halfway through);

We rode in a hovercraft to a rocky point where the red dirt meets the sea to see fossilised footprints of  a Bracheosauraus;

We drove our 4wd into the Kimberley’s to walk through Windjana Gorge and wade through the dark caves of Tunnel Creek.  We saw freshwater crocodiles and beautiful cliff faces and Pippa and I shared a sand bar with a black headed python in the dark (absolutely, positively, no way was I stopping to take a photo of him with a flash in the dark!).  Thanks for shining the torch so we could see him though (and not step on him) James!  The wade out in the dark just wasn’t the  same as the wade in – what else was in the water??? – it could have only made it to the sandbar by swimming!  It took a long time for my heart reinstate itself back into my chest after that little experience!  It was a 14 hour day which included driving through a lot of bumps and corrugations, sand, a water crossing and being on high alert for cattle on the road all the way back in the dusk and dark.

And of course, what trip to Broome would not be complete without hours spent on magnificent Cable Beach?  We rode camels swum, explored rockpools and watched sunsets………

What lovely memories of a beautiful week in Broome and how special to have fun with family  as well.

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