Pippa Rea

Pippa's Journey with a Brain Tumour

Feb 4

Patience

by Virginia Rea

For the third cycle now Pippa’s blood counts are too low for too long.  It’s not a major concern, just a small and apparently rather interesting problem that needs solving.  Although now behind on her treatment plan, she continues to be healthy, happy and full of life.  As the plan is written in sand anyway I’m not to be  bothered by it especially as her doctor is not – he just has to figure out the best way to overcome it.  We will make the drive back again to Melbourne on Sunday ready for Monday morning and more blood tests that will hopefully allow chemo treatment.

To think that I am even using the phrase, “hopefully chemo treatment”!

On the upside, Pippa’s MRI report is one, singular word – Stable.

I don’t think I have ever used a singular word to describe anything in my whole life!  I certainly haven’t used a single word to “do” anything!  This one little word doesn’t tell me a whole lot but apparently it is the best outcome for an MRI result and more importantly, it screams to me patience at a time when I’m getting really itchy feet.  I guess the weekly drive down for low blood counts is also teaching me the same lesson.

Seven and a half months ago I literally collapsed into the the doctor who delivered me the very first piece of numbing news.  I still cannot believe the daily conversations I now have, the words I have to learn and the information I have to process.  I had to be patient to get a diagnosis that could be worked with and treated, patient to wait for the steroids to do their job, patient through radiation, patient for an MRI scan that could be read and now patient to get a consistent treatment plan and continue with what lies ahead.   Pippa, although still not missing a beat, is the most patient of all.  Never complaining about numerous appointments, treatments, tests nor the thousands of kilometres that we travel.  She happily went off to school on the first day of the school year full of excitement to see her friends and teacher but completely OK that she would miss the second one and most of the third.

Pippa (along with her understanding and patient brothers as well)  is certainly teaching me some life lessons.

School for 2014

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Jan 25

A Little Driving Holiday

by Virginia Rea

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!).

Fun Stuff

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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 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!

Fun Stuff Updates

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Jul 16

The Worst 24 Hours of My Life

by Virginia Rea

I honestly thought I had already well and truly had more than my fair share of “bad stuff” (I’ll refrain from using expletives) in my life.  Clearly everything that has happened to me over the past years has been to prepare me for what now lies ahead.  I have fought hard and strong before for the wellbeing of myself and my children and I will do it harder and stronger again.

Pippa has been diagnosed with an aggressive form of brain cancer within her brainstem.  Her treatment will soon start and will involve 6 weeks of daily radiation at Peter MaCallum Cancer Centre combined with oral doses of chemotherapy.

I believe in her and I believe in the team of Doctors (in particular, her oncologist) that are going to be walking this path with Pippa, James, Patrick and myself.

At the moment we need to find self contained accommodation for Pippa and myself in close to Peter Mac for 6 weeks with the hope that she and I will return to our boys each weekend to hang out and watch footy.

I need the continued positive support and energy drawn from all our family and friends.  Sometimes, I might need our little bit of space also.

Here begins our journey and I hope with all my heart and soul that this day will remain for ever the worst day I will ever have to endure.

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