Pippa Rea

Pippa's Journey with a Brain Tumour

Opportunities & Memories

With Pippa being so well the past few cycles I decided it was a good opportunity to travel west and visit my sister and her family in WA.  Pippa’s oncologist agreed and gave us medical clearance to leave shortly after her last chemo cycle. Things don’t always run smoothly though and for the 2 days prior to us flying out Pippa started some random vomits.  Not uncommon for oncology patients but most certainly uncommon for Pippa.  Advice from her oncologist was that the vomit cycle needed to be quickly broken before it set in and became a habit.  Not good.  His advice and preventative actions worked and we headed off vomit free (always a good option!)

It was so ridiculously cold and wet in Mandura that we had packed everything from beanies to bikinis!  Beanies were needed when we camped out one night to watch bilbies in the cold and the rain.  Pippa also spent a day helping Linda look after the tiniest little 2 week old greyhound puppies.  A long day but she loved every minute of being with all the dogs and helping out.

Unusual for me, I didn’t mind about the cold because we were there to spend fun times with family.  The other reason I didn’t mind about the cold weather in Mandurah was because we had decided to take an opportunity and create some memories – we were heading to Broome for a week!  7 days of red dirt and beach in 34 degrees!   We were lucky to have a beautiful house complete with a pool to base ourselves from, a 4wd to keep James happy and lots of things to do:

We visited a pearl farm and learnt how pearls are crafted;

We watched a movie at the historic 90 year old outdoor cinema (complete with jet taking off directly overhead halfway through);

We rode in a hovercraft to a rocky point where the red dirt meets the sea to see fossilised footprints of  a Bracheosauraus;

We drove our 4wd into the Kimberley’s to walk through Windjana Gorge and wade through the dark caves of Tunnel Creek.  We saw freshwater crocodiles and beautiful cliff faces and Pippa and I shared a sand bar with a black headed python in the dark (absolutely, positively, no way was I stopping to take a photo of him with a flash in the dark!).  Thanks for shining the torch so we could see him though (and not step on him) James!  The wade out in the dark just wasn’t the  same as the wade in – what else was in the water??? – it could have only made it to the sandbar by swimming!  It took a long time for my heart reinstate itself back into my chest after that little experience!  It was a 14 hour day which included driving through a lot of bumps and corrugations, sand, a water crossing and being on high alert for cattle on the road all the way back in the dusk and dark.

And of course, what trip to Broome would not be complete without hours spent on magnificent Cable Beach?  We rode camels swum, explored rockpools and watched sunsets………

What lovely memories of a beautiful week in Broome and how special to have fun with family  as well.

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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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A Happy Easter

The week before Easter was the second time Pippa has successfully made her 4 week chemo cycle.  The continual adjustment to her medication seems to be right for the time being  meaning her blood and her body’s processing of the toxicity of the drugs is finally as it should be.  Whilst I still live day to day, for the first time in 10 months, whilst I can’t plan, I can at least think a little further ahead.

I didn’t think this girl could amaze me any more, yet last week she did it again.  We were juggling treatment with school holidays, visitors and Easter.  After another very long day at the hospital on the Monday we came home prepared for the gripping, horrible pain that seems to be the normal first 48 hours of treatment.  Nothing!  Not even a hint of pain! By Wednesday I asked her if maybe she thought there was a mistake and the capsules were perhaps empty and the syringe just filled with water???  She shot me a look and asked, “Do you want to taste this disgusting stuff?”  No thanks!

Thus, we had a great school holidays and lots of fun with all our visitors.

This Easter was also our first Good Friday Appeal as a patient and a family of the Royal Children’s Hospital.  That was hard for me.  Every time I turned on the TV or opened the paper it was there.  It’s hard enough living your own struggle without being constantly reminded.  We put coins in the collection tins at all the traffic lights we drove through, Pippa and the boys went out to the street when the SES vehicle drove by and gave them a stash of money, but I didn’t want to hear or see anything.

The Royal Children’s Hospital is amazing; the staff, nurses, doctors, specialists and volunteers are incredible.  I wish the only way I knew that was from seeing the Good Friday Appeal on television.  Instead I can’t walk through the foyer of that beautiful building without seeing someone I know.

In July last year I kissed my precious daughter goodbye and let her go in for massive and dangerous brain surgery and I have now entrusted her medical future to her oncologist.  I know first hand the stories of that hospital and I am grateful every day for the skills and knowledge of the people at RCH who now form part of our daily lives.

In Pippa’s words, the best thing in the world would be that no child ever had to go to the Royal Children’s Hospital and that every child could live a normal life.  Unfortunately, that’s not going to happen, but at least we are so very lucky to have the Royal Children’s Hospital and all that it does for children.

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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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Brain Therapies

During radio therapy at Peter Mac Pippa’s oncologist and nurses strongly advised me that for at least the next two years I should support Pippa in undertaking and pursuing a range of therapies to assist her brain in its development and to minimise the side affects of the radiation.  This was reinforced and supported by her music therapist at Peter mac and by RCDFund and their music and yoga therapists who were also with Pippa  throughout radiation.

Thus, I have committed to an ongoing routine that so far incorporates drumming, yoga and dancing in addition to her sport (currently tennis and basketball).  On top of school she also does online brain training activities and games.   These therapies provide Pippa’s brain with stimulation in rhythm, memory, coordination, meditation, concentration, flexibility, balance  and left/right brain function.

Just as important though, each therapy is so much fun and she loves learning   them.  We are privileged that her “therapists” (teachers) are all special people in her life, bringing with them an abundance of positive energy and enthusiasm for what they love and in turn, sharing that with Pippa.

Drumming, yoga and dancing.  How lucky Pippa is to be able to have so much fun doing therapy!

In the words of her drumming teacher, “Yeah,……Good Work!”    Drumming Lesson

 

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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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