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 live 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.
Pippa Rea 
Dear Virginia,
I loved reading this post and today I feel like I have to leave a comment: As I am a scientist, working with cell lines in the lab every day, I’d like to thank you for your generous donation! I We couldn’t do our work if there weren’t people like you who support research in all different kinds of ways. I’m sure that there will be plenty of publications in journals such as Nature and Science soon, citing these cell lines and describing highly important findings that might help us to understand brain tumours and other diseases heaps better. Your donation will take us a few steps further towards developing effective cures one day.
With great appreciation,
Linda
What an incredibly kind,generous and very brave decision to donate 👏👏, totally agree with you, that tumour did not belong in Pippa’s SMART beautiful head.
What else would we expect ….even Pippa’s tumour seems like it’s very clever.
We miss Pippa everyday, our beautiful little friend forever.
Xx Catherine Matthew Flynn Lila and Lottie
Ps. Pippa still gets put in the smart group for maths in E1
Thank you Virginia for sharing your story with us all. All I can say is God Bless you and the boys.
God bless you guys >3 >3 >3 >3 ❤
❤
Congratulations on this amazing blog update. It’s so very sad reading it but for other families dealing with DIPG it must give a glimmer of hope that more research could have a positive role in their journey. Really, this donation is honouring Pippa so beautifully, yet again. The fact that the cells are
So useful is just so positive in the fight against DIPG as well as other cancers, it’s just an amazing gift you have given.
Much love and well done!
Carolyn and Jobe, coen and yarra
thanks
Virginia that was amazing, I really commend you on donating the tumour to research, it’s a brilliant thing to do in the hope of finding medical brilliance. I actually always wished I had asked for a “piece” of Evie’s tumour to be shown to me, I had a constant lingering to know what the hell that little monster of a thing had looked like, maybe then I could come to terms with it in some way?? In the meantime its a little bit of science that we all should know – glucose feeds tumours. So simple, yet a fact that receives little attention. x
Wonderful story Virginia, let’s hope the scientists can find a cure for this horrible disease
Pippa will always be in my heart wherever I am. Whether it’s at netball, school, umpiring or any other thing that I know Pippa would’ve done. She was a great person that touched many hearts. Pippa is in my heart forever. xx
Pippa was so beautiful
We will never forget her
She was so beautiful
Be strong Virginia, James and Patrick……. and Pippa
From Paul, Angela, Ethan, Noah and Emma Mclaren.
Pippa will always be in everyone’s heart forever.
[…] then that I would now be so closely connected with Murdoch via Pippa’s Trust we hold at the Tumour Tissue Bank. The surprised smile on his face when Pippa told him about looking after his dog was just priceless […]