Fun Stuff | Pippa Rea

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

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There’s a Monkey in Pippa’s Chair!

by Virginia Rea

Recently Pippa’s teacher and I were searching for resources to assist not only Pippa and her teacher, but also her class and school community when necessary. Among other information and support, we came across a program called Monkey in My Chair. A phone call to the organisation Missing School resulted in a connection to the Cure Starts Now who manage and distribute the Monkeys in Australia.

Pippa’s Monkey (aptly named, Monkey) arrived yesterday complete with his back pack full of extra information and ideas, a picture story book to explain his purpose and a “Monkey Junior” to stay at home and go to hospital with Pippa. We thought before rushing into things it would be best to make sure that Pippa and Monkey got along. His arrival was perfectly timed to test out his dancing skills………..

Getting along so far……..

Hanging around on the bar watching…….

After passing that with flying (dancing) colours there was no doubt that he would easily slot into class so off he went to school today for his introduction to the rest of D4 and his first day at school.

The introduction

Reading the story about Monkey

Apparently, Monkey likes to sit very still in class, is a great listener and his long arms and legs are perfect for giving hugs.

Monkey will get straight to work and sit in Pippa’s chair while she is away Thursday to watch Patrick and his St Joseph’s team mates play in the State Football finals and then again on Friday when Pippa is in hospital for some surgery on her eye to tighten and loosen the muscles. The aim of the eye surgery is to hopefully give her some single vision (instead of always seeing double) by tightening and loosening the eye muscles.

Lets hope Monkey doesn’t monkey around in her chair while she’s away and get up to mischief!

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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!

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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………

Cable Beach Sunset

Splashing at Cable Beach

Low Tide

Rock Pools

First Day on Cable Beach

Riding camels on Cable Beach

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

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Brain Therapies

by Virginia Rea

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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A Science Lesson

by Virginia Rea

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!