Pippa Rea

Pippa's Journey with a Brain Tumour

Feb 13

Happy 10th Birthday

by Virginia Rea

Happy 10th birthday Pippa.

Last night wasn’t so flash; first night of the chemo cycle and you were writhing in pain. A pain that grabs your belly and moves up the left side of your neck – I don’t know why that is. The belly pain is understandable but this not the first time you have the neck pain with it. I’m just not sure about that. Maybe last cycle I was wrong? Perhaps the first night on treatment is always going to be rough and nights 2-5 will settle down a bit. Last night was hard. I was tired after driving home, I forgot about you having an empty stomach before we started and everyone was vying for my attention. We missed the timing a bit (due to the empty stomach forgetfulness) and things were pretty awful. I wasn’t going to let you fight it curled up in my bed. I helped you with pain relief so you could fall asleep. After all, you are still battling with a cough as we’ll. It’s the first time I’ve used pain relief for you but your body seemed tiny compares to the pain. I needed to help you and holding you in my arms while we sang wasn’t enough last night. You slept well then ready to wake fresh this morning for your birthday.

Because of your strict diet this week you weren’t able to take your favourite mini mud cakes in to school for your birthday. Instead I made yellow meringues. Yellow is by far the favourite colour now! (with fluro green coming a close second)  Happy, bright, smiling, sunshine yellow. That did the trick and ticked the tummy-friendly boxes! A dairy free chocolate cake and sorbet worked a treat after dinner for birthday dessert tonight as we’ll. treatment or no treatment, a girl has to have cake and candles on her birthday! Presents and loads of messages for your birthday along with a trip out to the field days so you didn’t miss seeing Tony and Nan meant that it was a pretty good day.  And don’t forget about your gorgeous brothers giving your cuddles, sitting beside you in bed while your opened your presents and just loving you so much.

You were very tired though. I managed the routine better tonight and you were better too. The house was calm, you fell asleep during your massage and you were in bed within the two hour window before that awful pain had a chance to come. Maybe it is a first night thing when those drugs first hit your body at the beginning of each cycle? I’m not sure. I will have to wait and see next time.

For now though, happy birthday, Princess Pippa. I know you will read this; you quite often scroll through this blog on your iPad. I think it is helping you cope with all the changes we are going through. Having the words to read and the pictures to look at helps you understand what has happened and process it all without being scared.

Happy Birthday to You.  It is lovely every day to see your beautiful smile spread across your face.

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A new bike instead of James’ slightly too big hand-me-down

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Yellow meringues to share with classmates and teachers

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Happy 10th Birthday Pippa

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Feb 11

A Brave Face

by Virginia Rea

This Thursday 13th February is Pippa’s 10th birthday. We had planned on having a sleepover birthday party on Friday 14th.  Last week’s delay of chemo though meant that was not going to be possible – it would not be much fun having your birthday during a treatment week!  Thus, the date was brought forward to  Friday 7th February and her friends were coming after their weekly tennis lesson.  They were all so excited about the activities Pippa had planned.

Pippa’s description of her party………, “Mummy I know my friends enjoyed my birthday party, but I didn’t.”

Pippa waited until her 6 friends had fallen asleep before she came to me feeling terribly unwell.  She had been coughing a bit during the week which I had reported to oncology at the hospital but it had become noticeably worse that evening.    She told me that she knew she wasn’t well when she just couldn’t laugh enough during the movie they watched but she didn’t want to worry her friends.  A hotline to the Royal Children’s hospital for the next few hours, a visit by her GP  (very grateful as this was a far better option than taking 9 children to the ED) to make sure she didn’t have a chest infection and she finally fell asleep at 4am.  Unfortunately she woke with a temperature that only got worse the next morning. Breakfast in bed from her gorgeous friends barely raised a spark.

We went to ED where she became more lethargic but was still responsive.  Blood tests were taken and I again learnt more about this journey.  Here I was thinking Pippa must have had a chronic infection or critically low bloods.  However tests showed neither was the case and she was diagnosed with bronchitis or as a I would have called it not so long ago, a really bad cough.  A really bad cough though can obviously hospitalise her.   We spent the night in and she bounced back pretty quickly but will spend a few days off school to rest and have oncology appointments in Melbourne that had to be postponed on Monday.

I now know why I have to be on watch and on standby for every little sign every day.

Pippa will undoubtably have to have another birthday party where she too can have fun without having to put on a brave face.

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Feb 4

Patience

by Virginia Rea

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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Jan 28

PS

by Virginia Rea

Brain tumours are not like leukaemia in terms of research. Every day I look at Pippa in wonder and amazement but I will never be complacent. She truly defies logic. I hope that one day whatever it is that makes up her incredible being contributes to brain tumour research.

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Jan 28

Much Needed Research

by Virginia Rea

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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Jan 22

Coping with Chemo

by Virginia Rea

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.

Massage
Dinner – simple and healthy

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