Pippa Rea

Pippa's Journey with a Brain Tumour

Sorry, No Pic of an MRI……..

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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A Very Special Christmas

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. 

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Taylor Swift

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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A Christmas Carnival

I remind my children that if Pippa hadn’t developed a tumour in her brain there would be many opportunities we would have otherwise never experienced.  To take these opportunities and embed them in our family’s memory is the silver lining I compel myself to grasp onto during this time of trepidation.

One of these opportunities was our first experience in attending an organised event for families of children with cancer.  It was the Challenge Christmas Party.

In all honesty, I was nervous and hesitant.  There were times leading up to Saturday when I wished I had not committed to going or I could come up with an excuse to cancel our attendance.  I think subconsciously I was expecting to see signs up around many of the rides saying something along the lines of, “If your child has a tumour in her brain please don’t let her go on this ride……or this ride……..or that ride……….”

I think I was also expecting that I was going to be surrounded by “sick” looking children.  Pippa doesn’t look remotely sick and I was struggling thinking I would be placing us in a psychological space we don’t need to be in at the moment and potentially taking away our positive outlook.

How wrong I was!

Our expectations were indeed exceeded.  The carnival rides were numerous – as were the screams of excitement and terror!   Food, drink and ice cream were all in abundance.  Smiles were spread across the faces of children and parents everywhere and I certainly couldn’t tell which children had cancer and which ones didn’t.  Nor, I realised later, did the thought even enter my mind to look.  There were no ride police checking what “type of cancer” Pippa had before allowing her on.  Instead, there was freedom to run, laugh, eat what you like, drink what you like and be totally ordinary in an extraordinary environment that every child dreams of.

The day ended with incredibly generous Christmas presents and my children begging me to promise them we can go again next year.

Thank you Challenge for an awesome kick-off to the Christmas season and for showing me that we can participate in these type of events with ease. (And rather handy that her neurosurgeon gave her the OK to do summersaults and cartwheels again the day before!)

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