Brain tumor | Pippa Rea

L’amour de la Tour Eiffel

by Virginia Rea

Sunday 14th September was two special days in one and Pippa was happy to share the spotlight with her brother – or should I say, James was happy to share it with Pippa and the Eiffel Tower.

We were dedicating the entire day to visiting the Eiffel Tower but it was also James’ birthday and he was celebrating by going to the top of one of the most recognised landmarks in the world!

How to get to the Eiffel Tower from our apartment? Well, we just wandered down the end of our street, hopped on the batobus and leisurely made our way along the Seine. Pippa, James and Patrick thought that in itself was fabulous!

The majestic magnificence of the grand structure close up impressed each one of us. Along with the millions of tourists who visit it we also marvelled at its granduer. Of course there was no stopping Pippa going right to the top and taking in every view. We picnicked on the lawn at the base, walked around to the other side of the pond for the obligatory photos and rode on the carousel. Patrick bargained with the souvenir hawkers, but it was James that came home with something like 26 Eiffel Towers – I still can’t work out how!!! We took in every experience possible for Pippa to enjoy the Eiffel Tower. Her dream come true!

It was a very special day. We didn’t rush but just took our time enjoying every moment and at the end we had a birthday dinner for James.

Up the Eiffel Tower

From the very top

Family Snap

Picnic with a View

Tour Eiffel

Loving Being with Pippa

With Eleanor

Carousel Ride

James’ Birthday Dinner

Happy Birthday James

Fun Stuff Memories

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Hospital Waiting Games

by Virginia Rea

It just can’t be avoided and sometimes the waiting is just so painfully long. This week the waiting around kept us so late I had to drive the majority of the way home in the dark.

After two and a half hours in the eye clinic waiting room we were told in a 2 minute consult the redness will go in a couple of weeks and there is now single vision straight ahead………Pippa and I had already figured out both those pieces of information on our own now that the soreness has eased and the weeping has subsided. Really, the only person who can truly know how beneficial the surgery has been is Pippa. I can’t imagine what it was like for her to see double all the time and only she can decide whether the resulting single vision is enough for her to feel a bit more normal. Healing, time and the messages her very clever brain receives and interprets will let her know that. At least once the redness has gone he eye will sit more central and look normal which in itself is rather important for a 10 year old girl.

Luckily I have an unwritten rule that we always combine hospital trips with something fun. I try my hardest not to just make our trips about waiting rooms and appointments. Last week it was dinner in Lygon St with cousins; this week it was a games night with Julie and yoga in the morning followed by breakfast with Pippa’s favourite puppies, Chip and Frenchie before heading to the hospital. Thank goodness we came away from the games night with a new game to entertain us in the busy waiting room (aptly named “Too Many Monkeys”). I’m absolutely positive I won the most rounds………although after two and a half hours it all became a bit of a blur!

There was no chance of staying down again Thursday night – there was a very pressing reason to come back. Today is Book Week dress up day at school. Pippa had been planning for weeks and had an outfit that she had made with Nan ready for her to go dressed up as Agatha Christie’s “Miss Marple”. I don’t think I’ve ever seen brown and tweed look so stylish!

Pippa, Claudia & Monkey Junior in Lygon St last week

Cuddles for Frenchie & Chip

Too Many Moneys Game

Miss Marple Costume

Fun Stuff Updates

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Pippa’s Milestone

by Virginia Rea

Once you reach a 12 month milestone it then becomes ongoing – 12 months of……..12 months of diagnosis, 12 months of starting radiation, 12 months of ending radiation, 12 months of starting chemo cycles…….and so on. The more milestones that are reached and passed, the better.

For Pippa, the date she has continued to refer to and one that she will never forget is the date she underwent a risky and dangerous 6 hour craniotomy to obtain tissue from the tumour within her brainstem in order to reach a diagnosis to treat.

12 months was Friday 11th July.

What to do? A party? Of course Pippa the social butterfly wanted a party, but celebrating her head being cut open seemed a little bit odd. Instead, we came up with an idea to not celebrate, but recognise where Pippa is now compared to the same day 12 months ago. We decided that James and Patrick would come and watch Pippa do three fun activites that she now does on a weekly basis as part of her ongoing brain therapy. Therapies to keep her brain active, her cognitive function developing, stimulating her left/right brain, working her short and long term memory and to generally let the “lump” know that it certainly doesn’t belong! Doing them all on one day was actually quite tiring especially as it was during a chemo week. Regardless though, it was a perfect way to mark the date.

Twelve months ago Pippa went in for surgery relatively fit and healthy (she was a 9 year old who could walk and talk after all) emerging out 6 hours later with many of her gross motor functions diminished. A situation quite difficult and frightening for a 9 year old to comprehend. Most noticeably, she had lost the balance on her left side. Six weeks later her neurosurgeon was happy with her recovery but did advise me that the balance she still didn’t have may not fully return.

For the past 12 months music has formed a very important part in Pippa’s therapy and will continue to do so for years to come.

On Friday Pippa danced……….

She sang………

And she drummed………..

Each activity James and Patrick watched and they also tried. They spent a day in Pippa’s brain therapies.

At the end of the day the sun shone in the afternoon light and we flew kites together. Something liberating and free; beautiful and fun……….

No better kite than a yellow smiley face

James can do it with no hands!

Thank you to Pippa’s weekly “brain therapists”………….

Gorgeous Miss Mel

Angelic Elana

Rockstar Talin

Barry’s a Rockstar too!

Fun Stuff Updates

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12 Months with a Lump

by Virginia Rea

Yesterday was 12 months since an aggressive, inoperable lump was found growing inside Pippa’s brainstem. The ball started rolling and the domino started falling; fast……..

12 months later and I cannot believe the journey we are on is real.

People say to me, “I can’t imagine what you are going through.” My answer is always the same, “Neither can I.”

It is not something you can ever imagine. It is not something you can ever comprehend. It is what it is and you simply do the best you can. You enter a state of just being. Your perspective on everything changes. You become calmer yet you are more on edge. You learn patience yet you worry incessantly. You live each day in the day and for the day taking the day as it comes and dealing with it then not knowing or thinking about what lies ahead.

12 months on and these are some things I have come to know………..

I know our oncologist is one of the best in the world at what he does and I am indebted to him for his persistence and doggedness 12 months ago

I know we have come a long way

I know we have achieved amazing feats

I know we have a long uncharted road still ahead of us

I know that statistics are irrelevant

I know radiation and chemotherapy are horrible but necessary to help fight the fight

I know I will never get used to handing over chemotherapy drugs to my daughter

I know that love is abundant and you can never be full of love nor can you ever run out of love to give

I know that a little sister can be her brothers’ best friend

Most importantly, I know that Pippa has the most amazing constitution, inner strength and wisdom beyond her years. Her attitude to life, is infectious and her whole approach to the past 12 months is inspiring.

Updates

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Winter Blues

by Virginia Rea

A friend of mine once told me she thought the “Winter Blues” were just a myth until she met me.

I’m not a cold weather person. I don’t like layers of clothes; I am much happier in shorts and a t-shirt with the sun shining warm on my skin.

This week has seen Pippa complete her 8th cycle of chemotherapy. She only had one uncomfortable night on day 2 but we managed that with some stomach cramping medication and our normal chemo routine of massage, healthy food, baths and of course, cuddles from not only me but James and Patrick as well.

I was perhaps exaggerating how cold I was during the southern WA cold spell a couple of weeks ago – I’m now feeling that was warmish……. This week Victoria has seen the weather change to real winter weather and along with it (and during the chemo cycle) came a cough for Pippa. It started small and only at night time. It wasn’t bothering her much but listening to it I knew it was going to become nasty. I watched and waited. On Monday it turned and she couldn’t stop coughing. I knew that based on the last cough she would end up in hospital but wasn’t sure whether I was supposed to wait for that to happen or if there was something I could actually do.

Yet again I rang the Royal Children’s Hospital Oncology department for help and advice and then off we went to visit the GP. My suspicions were confirmed and the GP gave us some antibiotics in the hope that we were just enough ahead of the infection to help her compromised immune system fight it before it got the better of her.

The first night on anti biotics I spent popping ice into her mouth so she could sleep. The second night I gave her strong pain relief which also acts as a cough suppressant because she has pulled all her stomach muscles from coughing. So far the anti biotics have supported her and her immune system is holding up instead of shutting down. She’s happy enough within herself but she can’t go to school. We still went to dancing yesterday which in itself was good medicine – some lovely light movement to some beautiful music that of course brought an emotional mix of tears, smiles and laughs (to everyone but Pippa, she’s just the smiles and laughs part).

Fingers crossed Pippa and her immune system can hang on and win this mini fight………

This is going to be the longest bout of the “Winter Blues” I have ever had. Summer with its warming, happy sunshine can’t come quickly enough as far as I’m concerned.

Updates

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Opportunities & Memories

by Virginia Rea

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!)

Nibbles is good to cuddle after vomits

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.

Getting the torch ready

Bilby

Helping Linda with cute little greyhound pups

Another Puppy!

Cousin Love a

Cousin Love b

Pippa & Chloe

Pippa & Mel

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;

A Pearl in the Oyster

A $2,910 Pearl Necklace

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

Outdoor Cinema

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

Hovercraft

Fossilised Dinosaur Footprint

Standing in a Dinosaur Footprint

Where Dinosaurs Walked

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.

The famous Gibb River Road

Prison Boab Tree Near Derby

Walking through Windjana Gorge

Windjana Gorge

He looks like he’s smiling

Heading into Tunnel Creek

Tunnel Creek

A water crossing

Windjana Gorge in the Kimberley’s

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………