Pippa Rea

Pippa's Journey with a Brain Tumour

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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Cup Week

Chemo can’t happen this week as Pippa’s blood tests showed that her platelets are too low. Only one cycle (week) in and we’ve met a hiccup with no real logical (as yet) explanation. One thing’s for sure, Pippa herself is just brilliant and looks better and better every day. Her smile, especially, is noticeably bigger. Now we need to wait another week to see what her blood tests show next Monday.
Our plans are so very much written in sand. Here I was thinking after today I would have a few weeks off driving that long, tiring road……. Off we will go again next week…. I also went through my calendar in my phone and deleted all the “chemo weeks” I had marked in for the next 12 months. That’s clearly not how organised I’m going to be!
The upside I guess is it’s “Cup” week and not “Chemo” week after all! Giddy up horses and someone please pour me a drink!!!

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Riding High

Today was ride to school day.  Today was a big day!

Pippa and I had talked that she would ride today but this was going to be a pretty big challenge.

Before 26 June Pippa was a natural athlete – able to do any sport, running fast and winning often at school athletics…..

On 11th July, Pippa had a craniotomy and lost her balance…..

After the craniotomy and 7 weeks of radiotherapy Pippa could still not walk in a straight line without losing her balance.  Her neurosurgeon advised that any loss of balance from the surgery should have returned and to be prepared that she may not regain her balance.

Today Pippa rode her bike (slightly large as it used to be James’) along the bike path to school.  She was so proud of herself and even extra excited about receiving a t-shirt for her efforts!

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Crossing Lady Lorraine Happy to see Pippa on her Bike again

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Riding Along on Your Push Bike, Honey……

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Jumping for Joy!

What a great Day!  And to top it off, the sun was shining brilliantly 🙂

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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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One step forward

The first week of chemo is done and dusted and we are one step closer to the end of this next phase of Pippa’s journey; one day at a time, one week at a time for the next 12 months.
We are fortunate that Pippa was able to take both her chemo drugs orally along with a plethora of supporting medication. This meant although tired at night time and on the weekend, she was able to go to school and be happy with her friends. Normality in itself is a wonderful medication. She rode the wave perfectly with no nasty side affects showing their ugly head.

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Entering the Unknown Again

A day at the hospital with serious warnings about how “disgusting” but important one of Pippa’s chemo drugs will be……….

A drive home feeling like a mobile pharmacy…….

Drugs dispersed…….

A shrug of her shoulders followed by a comment, “Hmmm, that’s not so bad after all!”

And we’re off on our next and very long phase of killing the tumour that nests within Pippa’s precious brain…………

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