Pippa Rea

Pippa's Journey with a Brain Tumour

3 Weeks of Being a Normal 10 Year Old

Pippa has just completed her 7th cycle of full strength chemotherapy (after having also had the 42 days straight of low dose in conjunction with radiation).  7th of I’m not really quite sure how many.

Between the last cycles Pippa had 3 weeks of being a normal 10 year old with no trips to hospital either planned or unplanned in between cycles and no pains or discomfort.  She enjoyed the holidays, went to school, had plays and sleep overs with friends  and  made the most of everyday life.  All with what seems like an almost complete smile across her face.

So normal were we that when we were due to go to Melbourne to the hospital ready to start the most recent cycle we both had trouble leaving.  I seemed to wander around the house aimlessly for 2 hours!  It was a beautiful sunny Sunday; Mothers Day in fact,  and Pippa was playing James & Patrick.  She came to me to say she didn’t want to drive to Melbourne and leave James and Patrick again.  At the same point I found myself ironing James’ school tie (what??!!).  We hugged.  The stalling for 2 hours was just a feeble attempt at trying to put off the inevitable and not reenter the life we’d been able to ignore for the past 3 weeks (sort of).

Of course we made the trip down the highway.  This time Pippa read her book out loud for 2 of the 3 hours.  We went to the hospital on Monday, all was good, collected the medication and came home that night to start the chemo routine again.  Like last time Pippa breezed through the week of treatment with no side affects.

 

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9 months in

Yesterday was 9 months since a lump the size of a golf ball was found inside Pippa’s brainstem.  Our options have been nothing other than to kill it and Pippa’s doctors have attacked the tumour as aggressively as it attacked her.

The anticipation, anxiety, trepidation, stress and worry leading up to an MRI scan is unbearable.  Not knowing what is going on inside, but knowing that soon you will be updated rips you apart in every direction.  Holding all that together on the outside is exhausting.

Yesterday evening Pippa’s oncologist rang me.  He was sitting in front of Pippa’s scan from the day before and could easily see a shrinkage in its size.  Death to tumour is our ultimate goal; shrinkage to tumour is an unexpected bonus!

We have a very happy little family in our house at the moment but we all know there is still a long path ahead of us.  And just to remind us poor Pippa has spent the night with another sore tummy and then provided a slight interruption to writing this blog this morning for a vomit.

For the time being I feel that we are one step ahead of the tumour and I can’t wait to see the pics for myself next week.

 

 

 

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A Science Lesson

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!

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Patience

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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A Little Driving Holiday

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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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.

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