Pippa Rea

Pippa's Journey with a Brain Tumour

A Professional Rockstar

What does a superstar do before jumping on a plane and heading off to Paris?

Record a CD!

Last night Pippa fulfilled another dream and recorded her own CD.  It was 3 hours of work and she was a true star.  Singing not only all the songs (some of which were very difficult) but also recording some of the backing vocals to drop in as well. On Sunday evening she had photos taken for the cover complete with outfit and location changes!

The production and graphic design will all happen  whilst we are away and Pippa will have her very own CD upon our return.  What a fabulous opportunity for a little girl who sings her heart out every day.  So many many heartfelt thanks to everyone involved in pulling this off so quickly.

We finally managed to get seats on flights, a lovely Parisian apartment and are flying out to Paris tomorrow evening (Thursday).  We arrive in the middle of a 3 day music festival, and next week is Paris Fashion week – what a time for a superstar girl to arrive!!!

 

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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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Taylor Swift

When I was very first pregnant with James 14 years ago I was told by a friend your children will take you to your highest highs and your lowest lows but they are the most wonderful thing that will ever happen to you.  I had no idea how extreme these highs and lows would be and how right he was.

Yesterday was a highly anticipated day as we were going to the Taylor Swift ‘Red’ Concert and Pippa was a lucky girl; one of four little girls chosen by Challenge to meet Taylor.

A red dress and a red flower hairpiece were arranged.  A little bracelet was made by a friend as a gift – one for Pippa and one for Taylor.  An autograph book and pen were on hand. All was set, what a day it was going to be!

We woke in the morning to a bit of blood smeared across Pippa’s face and a slight blood nose – James wondered if Pippa was perhaps going a little too far with the Red theme!

We drove to the RCH with ice and tissues.  Blood tests were done and an emergency blood platelet transfusion was ordered.  Pippa was not pale and lethargic, she was literally running around the hospital whilst we were waiting.  The nurses and doctors knew about the date with Taylor and explained to Pippa she needed to have safe blood to be able to meet her.  

Plans were changed and we got ready for the concert in the emergency department.  There was a point were I didn’t know if we would make it in time and if we would would still be able to meet her.  Challenge were so supportive and communicated everything with Taylor’s management to please still let Pippa come to meet her

The hospital rushed through the transfusion to as fast as it could go.  We were late but Taylor waited for Pippa and what a beautiful time it was.  Special cuddles with a world superstar.  Taylor told Pippa how gorgeous she looked in her dress and how pretty the yellow strap on the bracelet was (Pippa’s new favourite colour).  Pippa was so happy.  I, on the other hand, was still pulling myself together just from getting there and wondering how much can one mother bear?

The concert was an amazing spectacle and every song was sung along to.  Taylor has been on this journey with us from the start.  Her songs have been sung through the highs and the lows.  She can get rid of  nausea and now also is capable of making blood transfusions bearable.

What concert, what a superstar, what a girl….peaks and troughs; what a day!

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What a Girl

Wow! What a week for Pippa! What a happy, strong and determined girl she is. The smile is permanently planted on her face.

Pippa’s not able to have chemo so we’re waiting again to see what happens next week, but at the moment, who cares???? She’s happy, seems as fit as a fiddle, is at school and when told she had to go back to the Royal Children’s Hospital next Monday she as quick as a flash told her doctor, “Oh no, not me, I’ll be on school camp!” It’s Pippa’s first ever school camp and there is no way she is going to miss it. I already knew that if chemo clashed with it I would be packing it up and taking it along and just dealing with what would happen. I’m slightly glad I don’t have the stress of having to do that! A little bit of negotiation with her doctor and me and Pippa agreed to us driving down Wednesday morning not missing out on one minute of camp because of some silly old tumour in her brain!

Next, I had the pleasure of telling Pippa she is off to see Taylor Swift when she plays in Melbourne in December! We were in the waiting room for the eye specialist and she couldn’t contain her excitement! The smile is still on her face and she mentioned it to no one at school until she could share it at show and tell today! Big news!!!

Who's happy to be going to see Taylor Swift???

Who’s happy to be going to see Taylor Swift???

Then tonight she surpassed all my expectations yet again. Truly an incredible and inspiring little girl! James is currently studying the Great Barrier Reef and its threats. I showed him the website www.fightforthereef.org.au. I suggested to Pippa that she have a look at it as well and that there is a section on the website where she might like to share her story to save and protect the Great Barrier Reef. Pippa quietly sat on the couch and wrote this all by herself:

My Reef Story – Save the Great Barrier Reef

Dear Federal Goverment, I have been on a trip to the Great Barrier Reef recently. I would really hope that you don’t destroy it because I would really like other children to go. I hope that it doesn’t get destroy because it’s an amazing adventure and experience for everyone. I’ve got a fair few reasons and they are

1. The reef is a beautiful place
2. The GBR is very colourful and calm
3.you’ll destroy all the animals territory’s
4.you’ll defiantly destroy the hearts of people
And that’s all the reasons. So please don’t hurt and harm the fish,turtles,reef sharks. I don’t want you to particularly harm or hurt the anemones or coral. Cause I don’t know if you know but I do. Anemones and coral are never able to move ever they always stay in the same spot. I’m nine and nine months old and I know that everyone has a dream. Even all the poor people have a dream. Some of them might have a dream to see the Great Barrier Reef and by the time they’ve got enough money to go and see it you would have already destroyed it. But you’re not just hurting the animals but ruining everyone’s dreams. I hope you’re feeling great what you’re doing. I know I’m not feeling great and I defiantly think that others are horrified,disappointed,sad,destroyed, hurt and much more emotional terrible feelings. Don’t Hurt The Reef. I love the reef and you should love it as much as I do. From Pippa Rea
I’ve got a blog if you’re interested it is http://www.pipparea.wordpress.com

Pippa has again blown me away while simultaneously bringing tears to my eyes.

Sometimes I find myself thinking that if Pippa didn’t have this awful tumour in her brain there would be so much I wouldn’t know about my little family.

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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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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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