Pippa Rea

Pippa's Journey with a Brain Tumour


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


Coping with Chemo

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.


%d bloggers like this: