Pippa Rea

Pippa's Journey with a Brain Tumour

Brain Cancer Research

Yesterday when the rest of Warrnambool and our surrounding district were contemplating whether or not to brave the wintry conditions and head to the race track for infamous Grand Annual Steeple Chase, James, Patrick and I headed down the very familiar road to the Royal Childrens Hospital.

It was a purposeful visit so I had not even considered that I would feel strange going there again, or perhaps even worse, get quite upset or not be able to walk in.  On reflection though, Pippa’s visits to the hospital had really not left us with a sour taste of any sort.  Once she had overcome a few traumatic “firsts” – surgery, treatment, blood tests, tablets………. she always entered and left in happy spirits, leaving a blazing trail of smiling faces in her wake.  Whilst our news and appointments could quite often be traumatic and heavy, Pippa was never sad when she was there.  I guess, yesterday, it just felt a little strange to be there without her running around.  I found myself a couple of times expecting her to come bounding back from a stint in the Starlight room or finding me after having visited her friends at the security office who knew her by name.

Our main purpose yesterday was to take a tour of the Murdoch Childrens Research Institute.  Actually, not the whole facility, but the Tumour Tissue Bank Laboratory.  We donated Pippa’s tumour to research post mortem and when I made this decision last year I had one request.  Pippa’s doctor was surprised, but only too happy to arrange for us to see the laboratory and understand a little more.  I felt that it would be good closure for us on the “disease” and I also felt that James and Patrick would benefit from seeing the nuts and bolts on what happens to the “donation”.

Together, we learnt some incredible information.  On the night the tumour was removed Pippa’s doctor rang me to humbly thank me for the rare gift we had given him.  He told me they had already started testing and working on it.  Our “donation” is only one of two DIPGs that have been received at RCH but the only one that has been able to have cell lines grow from it. Apparently this is actually quite difficult and not always achieved meaning there is less scope for the donation.  Without becoming too scientific (and risk incorrect information), our “donation” has resulted in the growth of 30 different cell lines from which stem cells will also be grown.  What was intriguing is that each cell line has to be “fed” once a week – nutrients for growth such as glucose!  In addition the “donation” is now in 100 different tissue samples and from this DNA and RNA of both short and long lengths have also been obtained.  The vials of tissue are stored in the freezer at -80degreesC (it was fun touching the ice but we didn’t dare try out our tongues!) and the cell lines are stored in an incubator at body temperature; 37degreesC.

I must say, after all these years, whilst listening and looking through the microscope, information and knowledge from my high school science classes came rushing back to me!

In short, our “donation” is kept and researched on forever with some of the cell lines and tissue samples already beginning to be sent to other labs in Australia and around the world as applications for them start to filter in.

I was pleased to see that our “donation” has a number and not a name.  I always told Pippa the tumour was not part of her and did not belong where it was.  Instead, I left behind Pippa’s bookmark so that her happy face could beam from the Paris balcony each day marking the lab book as the scientists log their work.

In the last few weeks Pippa had asked me if the tumour could ever be removed.  It was different than when she had previously asked the same question.  That was the time for me to answer honestly that yes it could be and to say when that was able to happen.  She knew what that meant.  A conversation a mother should never have to have with her daughter.

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Public Notice of Thanks

On Saturday I placed a public notice in the local paper extending our personal thanks to the community.  It would be remiss of me not to extend that thanks further to friends and family across Victoria, Australia and around the world.  Thus, in continuing to use this blog as a form of communication:

Pippa Rea Thank You

I feel like I will be numb forever and I feel like I will always be looking around for her or wanting to tell her something, hold her hand, laugh, sing……..waiting for her to run into the room and give me a big cuddle.  Sometimes I even think (or perhaps wish) the beautiful photos that she ensured surrounded me before she went would come to life.  It’s a hole that will always be with me and will never be filled but I am eternally grateful to everyone for their support.

True to Pippa and her love of music, words to another song from her playlist come to mind…….

At the end of the day some you win, some you don’t,

So I’m glad that I’m here with some friends that I know,

Always there with a smile saying, “You’re not alone”.

My darling little girl…………

Love

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