Pippa Rea

Pippa's Journey with a Brain Tumour

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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One step forward

The first week of chemo is done and dusted and we are one step closer to the end of this next phase of Pippa’s journey; one day at a time, one week at a time for the next 12 months.
We are fortunate that Pippa was able to take both her chemo drugs orally along with a plethora of supporting medication. This meant although tired at night time and on the weekend, she was able to go to school and be happy with her friends. Normality in itself is a wonderful medication. She rode the wave perfectly with no nasty side affects showing their ugly head.

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Entering the Unknown Again

A day at the hospital with serious warnings about how “disgusting” but important one of Pippa’s chemo drugs will be……….

A drive home feeling like a mobile pharmacy…….

Drugs dispersed…….

A shrug of her shoulders followed by a comment, “Hmmm, that’s not so bad after all!”

And we’re off on our next and very long phase of killing the tumour that nests within Pippa’s precious brain…………

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Fearless

Not only did our Make A Wish Trip allow Pippa to snorkel with the fish on the Great Barrier Reef, we were also able to visit the Cairns Zoo, ride the train and Sky Rail to Karrunda to visit the butterflies, do more snorkelling on Green Island and catch up with some old friends and make some new ones.  In addition, the trip  also highlighted to us our fears………..

Patrick, for example, is incredibly fearful of butterflies landing on him;  James, is not that great with riding above the tree tops in a sky rail capsule; and my fear of snakes came as no surprise at all!  (I’m sure all three of us are not alone in our fears either!!)

Pippa on the other hand, fears nothing.  We tried our hardest, but could not come up with anything she is scared of!

A week in Palm Cove, a few days in Melbourne and some time at home.  We have spent the past two weeks with no hospital appointments, doctors or drugs.  Now we start on the next 12 months.   Needless to say Pippa is not fearful of anything ahead of her (except perhaps of no longer having Jessie from Peter Mac doing her blood tests).  Our trip to Melbourne this afternoon was spent singing Taylor Swift songs at the top of our voices, a bit of Taylor Swift education for me in case I didn’t know a few facts, and a brief discussion about killing tumours with chemotherapy drugs that may or may not be pleasant to take.  All in her stride!

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