Pippa Rea

Pippa's Journey with a Brain Tumour

A Magical Reef Wish

The anticipation leading up to today was indeed high.  Even though Pippa has had a wonderful time over the past 3 days on our Palm Cove holiday, she was terribly excited about today, “Her Wish Day”.  And she was not in the least bit disappointed.  The weather was absolutely perfect –  30 degrees and crystal clear turquoise water of glass.

The Quicksilver Outer Reef staff were expecting her and they treated her as the VIP she deserved to be.  The underwater observatory and a ride on the semi submersible where we saw turtles and a reef shark prepared her well for her snorkeling experience.

At first it was difficult.  Combining the breathing with the deep water and the vast ocean to eventually overcome natural trepidation took a little perseverance but Pippa was determined.  Quicksilver and Make-A-Wish had organised a marine biology snorkeling tour which was amazing.  In my previous life I have been to the reef many times but to snorkel alongside my children with a marine biologist explaining the different corals and fish was truly special.  Our guide would dive down and point out special fish and corals to look at and do it all whilst wearing a Go Pro for us so we could bring home our own memories.

Pippa swam and swam.  She saw everything and did not miss one piece of coral she snorkelled above or pretty fish that swam past her.  As the horn sounded to come aboard she was still swimming.  As everyone else was climbing our of the water Pippa was darting in, around and under the platform.  Eventually, the last person in the ocean the Quicksilver staff member who was getting great enjoyment watching her bob around tapped her and said, “Pippa, you’ve got to come aboard now or you’ll be left behind.”  To which she replied, “That’s OK, I’m busy following a fish anyway!”

Thank You Make A Wish and Quicksilver.

In the semi-submersible

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Suited up – sun protection, stinger protection, sea lice protection and looking oh-so-fine!

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Pippa snorkelling

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What do 3 children do after a long and tiring day snorkelling on the Great Barrier Reef?…………..

Pippa; have a shower, write some postcards and fall fast asleep

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James & Patrick; fold each other up in the rollaway bed!  And yes, it did close all the way!

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Three Wishes

On Tuesday Pippa was granted a wish from Make-A Wish Australia.  The local branch delivered the wish to her and although she didn’t have a lot to say at the time, she woke up Wednesday morning and hasn’t stopped talking about it since.

http://www.standard.net.au/story/1783432/pippa-flies-to-the-sunshine-after-great-barrier-reef-wish-granted/

Tomorrow morning we fly to Cairns for a week staying in Palm Cove so Pippa can live her wish and snorkel with the fish on the Great Barrier Reef.

Our whirlwind life continues.  A crazy mix of highs, lows and lots of in betweens.  It will be wonderful to be in some hot weather, enjoying the beach and some amazing adventures.  We will create some more wonderful memories and I’m sure that snorkelling on the reef will be an experience Pippa will always remember.

I am currently the laughing stock of my family as my wish is to just lie on the beach for the entire week and be rotated every now and then;  my children’s wish for me is that my memory returns!

Thank You Make-A-Wish.  Pippa’s smile will be permanently on her face for the next 7 days.  Whether or not the other two wishes come true remains to be seen………

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What’s Next

Pippa has returned to school this week and I am busy tying up 100s of loose ends from my life prior to 26 June along with planning our future routine.   We currently have a month off major medication although the radiation is still actively working in her body for another 2 weeks.  In October we commence 12 months of intense chemotherapy.     We will continue to travel to Melbourne for check ups, specialists, scans and to collect the drugs. Fortunately, the medication can be taken orally which hopefully means minimal disruption.

My children and I are fortunate to have so many people caring about us and I am extremely grateful.  It is evident to me returning home how important it was for James and Patrick to be able to continue with a normal routine.   The support Pippa and I had in Melbourne made our life away from them so much easier.  I am so lucky that I have friends and family in both locations.  I often thought and also commented that it would have been much harder had we relocated for 7 weeks to a place  where we knew no one and had no support.  I know that is the situation for many people who have to travel long distances and  interstate to receive specialist medical treatment.   It must be incredibly difficult and daunting.

To everyone in Melbourne and Warrnambool who has shared coffee, wine, walks, food and laughs with me, “Thank You”

To everyone who has given up their time and energy for my children and I when you didn’t think you actually had any spare time to give from your own lives, “Thank You”

To everyone who has gone out of their way to do amazing feats for us,  “Thank You”

To everyone who has read and continues to read this blog and therefore sends positive thoughts our way, “Thank You”

To three businesses in Melbourne who unknowingly made our life a little easier, happier or pleasant when we dealt with them:   Fleur Depot De Pain (Cafe on Arthur St off St Kilda Rd); Classico (Restaurant  on Arthur St off St Kilda Rd);  and Uber (the most fantastic App to download and use instead of a taxi), in particular Pippa’s favourite driver Adriano “Risotto Man”

 

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Radiotherapy Comes to an End

Six and a half weeks of radiotherapy and the second stage of the life we have been thrown into is over. I don’t actually know how I feel about it. I thought I would feel happy.

I feel a little vulnerable because I don’t have the security of being at a hospital every day.

I feel a little anxious because I won’t know for a long time what’s happened on the inside; although the outside signs are truly positive.

I felt a bit sad this week because radiation was coming to an end. I cried this week because I heard the recording of the most beautiful song I would ever hear – an angelic voice singing about what should have been a very frightening experience. I had tears today when I said goodbye to people that have helped us every single day over the last 7 weeks.

I laughed today when Pippa leapt off the bed for the last time, ran out of the room, down the tunnel and out the doors with radiotherapists chasing after her. She was presented with a bunch of colourful balloon flowers, and a cartoon drawing. Soon she will received a dvd of her experiences with her song as the backing track. She posed for photos and promptly threw the balloon flowers in the air as soon as the cameras had finished clicking.

The approach the staff at Peter Macallum Cancer Centre have to paediatric radiotherapy is truly beautiful. Children come into an adult hospital to be treated in an isolated room by a massive machine that exudes strange noises and smells. Their body part being treated is strapped in still and lined up with laser beams. Despite all this, our experience has only been positive, supportive and caring throughout the whole process. From reception to music therapy, to mask adjustments and of course, radiotherapy, every single staff member has been a joy to deal with and a pleasure to be around. Never once have I hesitated in leaving Pippa alone in that treatment room because they make us feel so secure. Never once has Pippa asked for me to come back in. Requests have been accommodated without hesitation and our continual entourage of visitors have been welcomed and included. I cannot thank each one of them enough for making our experience not only bearable, but pleasant, happy and memorable.

Over the past few days Pippa has written more than 25 thank you cards to every person she has met across our course of radiation. Each card included a photo and a specific comment about that particular person or what they have done for her.

This week small changes have been happening. The steroids which perform such an important job initially are now no longer required and their side affects are starting to visibly reduce. Pippa has her old cheeky personality back most of the time, the chatter is starting to be constant again and she wants to be more active. Her eye has opened a bit wider, closes a bit more and tries really hard to move. Her balance and coordination seems to be better. These are small signs and these are good signs, but we know that it’s still a long commitment we’ve signed up for.

Today radiation came to an end and now we have a month off before our next phase begins.

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Entering the Last Week of Radiation

This is now the 7th week we have walked through the doors at Peter Mac for Radiation. I think I speak for both Pippa and I when I say it has not been as frightening nor as bad an experience as either of us had anticipated. Pippa’s amazing ability to handle anything she faces with a positive and happy attitude combined with the doctors’ careful planning have meant that aside from being uncomfortable from the weight gain due to the steroids and some tiredness, she has charged through. And I do mean charged – quite often the radiotherapists do not keep us as she runs down the tunnel to the treatment room!

What better way to mark our final week than including James and Patrick for one last visit? They joined in on the French lesson where they played a game of French Bingo and James realised that his sister probably knows more French than him and poor Patrick was doing his hardest to try and pronounce the numbers. We went for a wander through Captain Cook’s Cottage and the Conservatory in the Fitzroy Gardens. Pippa decided that the house was small and she thought it would be hard to live in.

The highlight of the visit was being the first to listen to Pippa’s very own recording. She has written her own words to Mylie Cyrus’ Party in the USA named Party in Peter Mac Today. Immensely proud of both her attitude and her music, the smiles on their faces beamed with pride and the applause was loud 🙂

The next time we see James and Patrick Pippa will be finished with radiation forever. Fingers crossed that while she’s been coping so brilliantly on the outside the treatment has started to kill that rotten lump on the inside.

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How To Impress Your Grandfather on Father’s Day

Hit him for six in cricket!

And she did – right over his head! I didn’t buy Dad a bottle of wine, a block of chocolate or a pair of socks; I just said, “Happy Father’s Day Dad, here’s your grand daughter.” We ate fish and chips and packed the cricket bat and tennis ball. Never one to not give sport a go (nor for that matter, not be good at it), Pippa picked up the bat, walked over to the pitch and astounded us all with her ability despite her double vision and having just completed week six of radiation.

The main event this weekend was actually supposed to be James and Patrick going to the footy. I have been very mindful that even though they’ve been able to stay at home in their own space during all of this they have still been very displaced and thus I wanted to arrange something special for them. They had been given tickets to the MCG on Saturday night and each took some friends on the (Warrnambool Essendon Supporter) bus down to watch the match. The excitement leading up to the departure on Saturday afternoon was almost unbearable. For Patrick going to watch Essendon was just bliss, but for all of them they were equally excited about 6 hours on a bus with mates and arriving home at 2.00am.

Last week Pippa had some special visitors from the west – one bearing a task of naming some future greyhound champions which Pippa aptly did, the other (my sister) living in our apartment and bearing personal training sessions for me at every opportunity. It became harder as the week went on to reach up to close the curtains every night!

Thursday saw Pippa fitted with some glasses containing stick on prisms to try and see if we can encourage a bit of movement from her left eye. It’s a guessing game really as the extent of the nerve damage and thus whether there is to be any recovery at all is still unknown, but even trying to teach the brain to talk to the nerves again is worthwhile. Although watching her hit a cricket ball and you wouldn’t even know there was any problem with her eyes at all! Walking through the hospital she was lucky enough to meet a celebrity……….the Dulux Dog!!!

A visit from cousins earlier in the week meant games, lunch in the park and the girls got to join in on some Taylor Swift jamming in music therapy.

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