Pippa Rea

Pippa's Journey with a Brain Tumour

9 months in

Yesterday was 9 months since a lump the size of a golf ball was found inside Pippa’s brainstem.  Our options have been nothing other than to kill it and Pippa’s doctors have attacked the tumour as aggressively as it attacked her.

The anticipation, anxiety, trepidation, stress and worry leading up to an MRI scan is unbearable.  Not knowing what is going on inside, but knowing that soon you will be updated rips you apart in every direction.  Holding all that together on the outside is exhausting.

Yesterday evening Pippa’s oncologist rang me.  He was sitting in front of Pippa’s scan from the day before and could easily see a shrinkage in its size.  Death to tumour is our ultimate goal; shrinkage to tumour is an unexpected bonus!

We have a very happy little family in our house at the moment but we all know there is still a long path ahead of us.  And just to remind us poor Pippa has spent the night with another sore tummy and then provided a slight interruption to writing this blog this morning for a vomit.

For the time being I feel that we are one step ahead of the tumour and I can’t wait to see the pics for myself next week.

 

 

 

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A Science Lesson

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!

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A Little Driving Holiday

After the last chemo cycle we decided to pack up the car and take a little driving holiday visiting lots of wonderful friends.  A blood test on the Monday morning to check all was OK and we were on our way.  Also coming along with us was the recent heatwave!  We started by taking the ferry from Queenscliff to Sorrento, then went across the peninsular to Ballnaring, up to the Yarra Valley, across to Seymour and then back down to Melbourne and home.

Part of Pippa’s treatment plan is actually to be as normal as possible and have fun.  Her oncologist has spent a lot of time with Pippa and quickly realised  how much she gets out of life.  We often seem to be sitting in front of him with a bit of a smirk on our faces knowing that he will roll his eyes, shake his head at her and just end up saying, “Well, did you have fun young lady?”

Our next visit will be no exception.  Pippa has listed her favourite things she did on our holiday……..

Going on the inflatable behind the boat at Sorrento

Driving the John Deer and riding the horse at Ballnaring

Relaxing in the creek and swimming in the dam at King Lake

Getting thrown around the pool at Tallarook

Rock Climbing in Melbourne

She scaled 18 metres with ease.  Her brothers were considerably impressed but I was not surprised at all to look around the room and only see one pint sized rock climber 3 storeys high!  Pippa has no fear and will always give anything a go (and is usually pretty good at it too!).

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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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