Pippa Rea

Pippa's Journey with a Brain Tumour

Dec 30

Sorry, No Pic of an MRI……..

by Virginia Rea

A full day at hospital today also included an MRI that we had not told anyone about.  I have quickly learnt that keeping a poker face and holding MRI appointments close to my chest is a much simpler way to deal with the anticipation.  Unfortunately, it also seems to bring secret tears as I sit through the scan.

The result however, has proved worth it.  Whilst reading an MRI like this takes many weeks of intricate comparison to the previous scans, Pippa’s oncologist was very keen to have an “unqualified”  look for himself.  He is happy and can see some positive signs in the pictures so far.  This at last (after 5 and a half months of surgery and treatment) matches something solid and medical on the inside with what we see on the outside.  It also, I imagine, motivates and confirms for him that despite the length, the twists and turns and the intersections without directionsthe road he is following is perhaps the right one.

I should have taken a photo of Pippa in the MRI tunnel to placate my mother who likes to see photos on every blog.  Better still, I should have taken a sound recording of the most boring 45 minutes I always have to sit and ‘vibrate’ my way through whilst Pippa gets to watch a movie.  I didn’t.  I thought instead about my grandmother, Nellie, and secretly thanked my cousin who recently reminded me that her strength is passed through all of us and she sees it so clearly in Pippa and I.  Then I shed a few tears.

Now, I’m drinking bubbles and Pippa’s celebrating with another, in some ways slightly stronger and more aggresive than previously, course of chemotherapy.

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Dec 25

A Very Special Christmas

by Virginia Rea

No chemo this week again because of low blood test results meant that Pippa could enjoy Christmas Day and eat anything she liked!  Chocolate Mousse for dessert is exactly what she ordered!

Pippa has decided that she would like to write this blog after having a  lovely Christmas day with friends and family……….

This fine Christmas day we were up very early looking for our presents from Santa. We ended up finding them outside. Mine was under my tree.  I got a dream catcher and also a very adorable bunny rabbit.  We found out the rabbit was a boy and called him Nibbles.  Patrick got a surfboard which he was very exited about.  He had his first trial this afternoon when we went to the beach.  And James got a Garmin running watch which he loved too.

We had 13 people coming for lunch they were Kylie, Jp, Ana, Armelle, Brian, Jo, Pep, Simon, Steph, Lachie, Georgia, Anne (Nan) and Tony.  For lunch we had salad, ham, potatoes, seafood and lamb cutlets.  

While we were having lunch mum made an anoucement to think about all the children who have to spend Christmas in the hospital because I was feeling very sad for them and hoping that they would still have a fun Christmas.  Anne (Nan) made some delicious fruit punch.

 After lunch Patrick ran the “Kris Kringle” it was only for the adults. You had to role a dice then what ever number it landed on either from 2-12 there was something you had to do.  When the kids got their presents I got a book and bop it XT.  

It was very hot outside so we decided to play inside. First we played connect 4.  Once Lachie, Steph, Georgia, Simon and Pep had gone Armelle and I played a game.  Then Ana came in and wanted to play with us.  Later Patrick came in and he decided he would play too.  A little later James came in then it was getting too squashed in my room so we went to the playroom. Patrick and James went because they had to do something.  So Ana, Armelle and I did some magic tricks. Then Ana and Armelle had to go home.  

I had a great Christmas day with all my family and friends. 

My Christmas Present from Santa
I set the table
A Special Christmas Lunch
My Family at Christmas Time

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Dec 15

Taylor Swift

by Virginia Rea

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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Nov 14

What a Girl

by Virginia Rea

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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Nov 4

Cup Week

by Virginia Rea

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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Oct 28

The Waiting Game

by Virginia Rea

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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