Pippa Rea

Pippa's Journey with a Brain Tumour

Much Needed Research

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.

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The Waiting Game

Waiting, Waiting, Waiting……..

Again I wait.  This time because the post radiation scan cannot be used and needs to be regarded as a pseudo scan; the radiotherapy is still working in Pippa’s brain and thus the scans were distorted.  Now we just wait longer for a time when the scan can be certain to be clear of radiation.  After seven weeks of huge levels, this was not unexpected but Pippa looks and is so great it’s a bit disheartening and would have been just lovely to have something medically sound to validate her external signs.

This is what I have learnt recently:

  1. Sleep is important for every part (other than the golf ball in her brainstem) of Pippa’s body to stay healthy
  2. Really bad belly pain caused by nasty doses of chemo drugs is best dealt with heating one of Nan’s snuggle sacks and lying on the couch under a gorgeous, soft, snuggly aqua rug (by the way, yellow now seems to have overtaken aqua!)
  3. Nausea is most likely cured by cranking up Taylor Swift and singing (sometimes even dancing) your heart out – breathing and distraction!
  4. A vomit, if it’s going to come, should not to be confused with nausea and although it doesn’t happen often, when it does, grab the big purple bucket as quickly as possible.  It will be fast and furious, but will no doubt end with a big smile 🙂
  5. It is what it is and there will be twists and turns; peaks and troughs.  It will change the way I am but I can’t change it.  Our journey is not a path already planned or plotted;  we have no map to follow, no guide book and no directions.  I am being led by Pippa’s oncologist and follow one step behind him.  He is guided by Pippa.  So far she is doing an incredible job of leading us through the maze.

I don’t look too far ahead.  I stay in the present and deal with each day as it comes.  I am there whenever and wherever my children need me.  As a family I will take the opportunities that present themselves to create memories and experiences for us.  I am used to doing things quickly, taking control and getting the job done.  This is different.  There was urgency before Pippa’s diagnosis.  For now, I need to be calm and patient.  I need to wait.

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The Worst 24 Hours of My Life

I honestly thought I had already well and truly had more than my fair share of “bad stuff” (I’ll refrain from using expletives) in my life.  Clearly everything that has happened to me over the past years has been to prepare me for what now lies ahead.  I have fought hard and strong before for the wellbeing of myself and my children and I will do it harder and stronger again.

Pippa has been diagnosed with an aggressive form of brain cancer within her brainstem.  Her treatment will soon start and will involve 6 weeks of daily radiation at Peter MaCallum Cancer Centre combined with oral doses of chemotherapy.

I believe in her and I believe in the team of Doctors (in particular, her oncologist) that are going to be walking this path with Pippa, James, Patrick and myself.

At the moment we need to find self contained accommodation for Pippa and myself in close to Peter Mac for 6 weeks with the hope that she and I will return to our boys each weekend to hang out and watch footy.

I need the continued positive support and energy drawn from all our family and friends.  Sometimes, I might need our little bit of space also.

Here begins our journey and I hope with all my heart and soul that this day will remain for ever the worst day I will ever have to endure.

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