Pippa Rea

Pippa's Journey with a Brain Tumour

Lighting the way

The following article was first published in the Australian Yoga Journal:

Standing waist deep in water with rain falling on my face I reminded myself that I don’t believe in the phrase “everything happens for a reason”.  I do, however, believe in coincidences, circumstances, opportunities and fate.   That’s how I came to be in Honolulu, Hawaii, on Memorial Day 2016.   It was dark and I was wearing a now completely wet denim skirt and a black t-shirt, my hair was tied up in a pony tail and my bag slung diagonally across my shoulder tucked under my arm to try and avoid it from getting wet too.  Beside me my sons’ t-shirts were also damp from the soft sprinkling of rain and they certainly would have been more suited wearing board shorts in the beach instead of chinos.

A series of events over a twelve-month period resulted in me taking my two teenage sons to participate in the Annual Lantern Floating Ceremony at Ala Moana Beach Park, Honolulu.  The ceremony is an ancient Shinnyo-en Buddhist tradition representing the interconnection of past, present and future and carrying hope toward a peaceful and harmonious world.  Now, approaching its 20th year, Lantern Floating Hawaii themed “Many Rivers, One Ocean,” brings together all religions and sectors remembering loved ones passed.

Arriving at Ala Moana Beach Park in the morning to collect one of the 6,000 lanterns available we were expecting a long wait.  The line snaked through the lush park under the shade of the trees for hundreds and hundreds of metres.  The air was hot and humid and the grass wet from tropical overnight rain.  By the time it started to move at 10.00am the queue behind us was just as long as the one in front – thousands and thousands of people waiting patiently for their lanterns.  The first had arrived to secure their spot at the front of the line at 4am.  Families who make the ceremony an annual ritual had erected tents and marquees all throughout the park and along the beachfront from 3.30am.  One family I spoke to had been coming for 8 years.  They arrived at 2am but weren’t allowed into the park until after 3 to set up their tent.  Initially, they floated in memory of a family member who had passed prior to their first year.  “Now,” they said, “it is a tradition we will never miss.”  They are one of the first to arrive during the night every year and have their tent positioned so that their place naturally joins the queue about 50 metres back.

Music played, the waft of barbecues could be smelt from every part of the line, children ran around coming to and from the beach, people rode bikes or played games.  There were mattresses, beds, picnic rugs, umbrellas, fully equipped camp kitchens, bikes, toys, coolers, beach gear, tables and chairs; all stretching as far as you could see.  Food stalls are not prominent; the tent community bring their own.  All for just one day.  The scene reflected more of a party atmosphere or festival than a memorial ceremony yet everyone was still revered and I felt a sense of peace and calamity amongst both those waiting in line and those in their makeshift camps.

The queue moved quickly and collecting and writing on our lantern at 10.45am meant our wait in total was only an hour and a half.  The lanterns are environmentally friendly and refurbished by hundreds of volunteers each year to be reused the following one.  Marquee space is provided to write tributes and memories on the lanterns and many were then personalised further in other ways; mostly adorned with flowers and photographs or wrapped in leis.  We decorated ours with fresh frangipanis and photos.

Arriving back at the beach park later in the afternoon our anticipation was confirmed by the sheer mass of people who migrate to this ceremony.  No less than 50,000 adorned the beach and the park, yet, at the same time, there was no jostling for position or views.  It was apparent that some people liked to position themselves in view of the stage, some in front of the large screens, others in the water and others still stretching as far as the eye could see along the sand and around the curve of the bay.  Behind the stage there were even more people covering the rocky point that framed the southern rim of the cove.  Many people were simply wearing swimsuits, there were fully robed Buddhist Monks and everyone else dressed anywhere in between.  Most were barefoot.  We easily managed to position ourselves on the sand, directly behind the VIP area, in front of both the stage and a screen and with easy access to the shoreline.

The open aired stage, although elaborate in statuesque against the palm trees, was simple; pure white with soft subtle lighting continuously changing to compliment the setting sun.  Dramatic Japanese Taiko Drums were the feature on either side and a large cauldron sat high at the front ready for the ceremonious lighting of the “Harmony Flame”.

The ceremony itself lasted an hour and was a colourful and tranquil display of love, peace and harmony commencing with the haunting sound of the blowing of the conch shell out across the colourful beach where sand was no longer visible and the proverbial pin could have been heard to drop.  The sun dipped below the horizon across the water, it’s golden reflection rippling all the way to the shore.

Conversations with strangers confirmed that everyone was there to celebrate love, memories and remembrance:  the security guard who had lost his baby 14 years earlier; families who had travelled from around the world; the volunteer who had lost every female member of her family to cancer; the woman who was floating for a stranger she had met only very briefly but who couldn’t be there in person.  Lanterns were attributed to aunties, uncles, parents, grand parents and most sadly, children and babies.

As the incredible and moving spectacle of the floating began the rain started to fall.  Not heavy, but enough to make sure we were wet waist up as well as waist down.  Thousands of people waded out into the water without care for their clothing releasing their lanterns. The atmosphere was still revered and peaceful.  Even though we were amongst 50,000 people we could very easily have been on our own.  Gradually the bay filled with golden flickering lights; a breathtaking and heart-rending vision that spread and multiplied across the water as each lantern was released.

I thought to myself before we released ours it’s a shame it’s raining, but even so, it didn’t matter.  We released our lantern and pushed it out to join the others.  I watched it float away holding my boys tight and close.  I turned to see my friend busily taking photos of it drifting off.  Looking back out to the sea of candles I saw our lantern had come back.  I had a little chuckle to myself and pushed it away again.  Off it went and again it returned.  I gave it a harder shove.  Again it came back.  I thought they must all be floating back in, perhaps with the tide?  I looked at the other lanterns.  No, they were all slowly making their way out into the bay.  Ours was the only one that seemed to be going in the other direction.  I laughed and cried at the same time.  That was my daughter, always wanting to be with me; my daughter, my best friend, never leaving my side.  A woman had been watching me continually pushing my lantern out to no avail.  She came over to me and gave me a hug and quietly said to me, “It is tradition to say hello and goodbye to your lantern before you release it.  You must do this to allow it to float away.”  This time our lantern went out to join the others.  I must admit, I was a little sad that it did – I liked the feeling that it wanted to stay with me.

By this time the rain started to ease.  “You know,” the woman said, “in Hawaii rain is seen as a blessing.  It is cleansing and it brings healing, peace, growth and life.  Plus it provides us with the loveliest rainbows!  The fact that it started to rain as the floating of the lanterns began is very spiritual and beautiful.”

I looked at her, this woman I didn’t know who instinctively knew she needed to convey this meaning of rain to me.  Tears welled up more in my eyes and rolled freely down my face.  Before a cruel, inoperable and incurable brainstem tumour took the life of my 11-year-old daughter she had drawn a picture of her heaven.  Sitting on top of clouds her heaven was full of life with stars, music, birds, flowers, water, puppy dogs, bunny rabbits and a big yellow castle where she would live.  A long ladder stretched up to her clouds and underneath them was what I thought was rain.  She had corrected me though.  It wasn’t rain, they were the drops of water that I would feel on my face when she needed me to climb the ladder and visit her.

It was circumstances and opportunity that lead us to participate in the Lantern Floating Ceremony surrounded by so many people united together in emotions and gratitude of those gone before.  It was coincidence and destiny that made the woman approach me and explain about tradition and rain which invoked the memory of my daughter’s heaven and her wanting me to know we could still connect after she was gone.

On the 30th May 2016, 14 months and two days after my daughter passed I was standing fully clothed, waist deep in the tropical Hawaiian beach with drops of water on my face and floating lanterns as far as I could see.

That rain was meant to be.  It was fate.

The Lantern Floating Ceremony is held annually on Memorial Day at Ala Moana Beach Park, Honolulu.  

Anyone is welcome to participate in the lantern floating.  Lanterns are given out from 10am-4pm on the day or until they run out.

There is no cost or charge for floating a lantern.

 

9 Comments »

A Selfless Act

When we toured the Royal Children’s Hospital Tissue Bank to learn more about what our donation meant, I discovered that the laboratory is funded 100% philanthropically via the efforts and fundraising of an organisation called CIKA – Cancer In Kids @RCH.

As a parent it’s my responsibility to care for my children emotionally, physically and financially. Simply because Pippa has passed I don’t believe I owe her any less.  Thus, I asked the question whether or not I could set up a direct financial line to our donation?  I have never considered that tumour as being a part of Pippa, but I feel that the donation of the tumour and financially supporting (in whatever way I can) that donation is something that I need to do.  Luckily, I asked Pippa’s oncologist who would never dream of saying anything is too difficult or restricted by red tape.

Across subsequent visits, it became clearly apparent how precious our gift (donation) was. The tissue bank has only been collecting since April 2014. Since then of the nearly 200 donations from biopsies, surgeries and unfortunately, deaths, only 4 donations have resulted in priceless growth of cell lines. Ours is one of those four. Our cell line has been grown and is being sent off around the world for research. DIPG research is not only valuable for future children of this most horrific and cruel cancer, but due to nothing being known about it and its complexity, knowledge and research on DIPG has the ability to unlock answers across all tumours.

James, Patrick and I made the first donation to CIKA (Pippa’s Trust) followed by a group of local ladies who specifically wanted to donate to research directly related to Pippa.  I was pleased to be able to offer this direct ability.   Another donation has now also been made via the Robert Connor Dawes (Research, Care and Development) Foundation and, in particular, a selfless young lady, Hayley White, who is currently undergoing her own battle with brain cancer.  Hayley could have used this money for herself, but instead wanted to donate it to research related to RCH and Pippa. Rather than rewrite words already written, I will instead use those of RCDFoudation………

Today we donated $20,000 to support RCH’s tissue tumour bank in memory of Pippa Rea. That’s special in its own right but the story behind our donation makes it extra special. Several months ago 24yo Hayley White contacted Liz. She had recently been diagnosed with a stage 4 GBM brain tumour. Her friends & family were eager to show their support and proposed a fundraiser. Hayley didn’t want the money for herself but to help research into children’s brain tumours. A friend suggested our charity as she had done Connor’s Run. Hayley mentioned she was from Warnambool area, when she heard about Pippa Rea (also from Warnambool who lost her life at 11 to DIPG brain cancer) she was clear she wanted any $$ raised to support RCH research efforts. Over $17,000 was raised for Hayley! In keeping with Hayley’s wishes we consulted Virginia, Pippa’s mum. Pippa’s tumour tissue & cell line is at RCH/Murdoch Research Tissue Bank to be used in research at RCH & shared globally. This is rare & vitally important. So today Hayley, Virginia & Liz made the donation to RCH Tissue Bank. We rounded up to include other generous donations made by the Warnambool community in memory of Pippa. We are all genuinely touched by Hayley’s selfless, generous, big hearted nature…trying to do some good in the face of something so cruel. Today felt so v special, thank you Hayley.

Thank you Hayley (and to others who have fundraised and given money to RCDF in memory of Pippa).  Thank you also to Liz Dawes and the Robert Connor Dawes Foundation for seeing this as another worthy way they can contribute to research into brain cancer. Whilst not conventional, what I have set up means that fundraising or donating money to research in Pippa’s memory is possible and will go to the RCH Tissue Bank (DIPG326) CIKA (Pippa’s Trust) and to be used specifically on research and needs directly related to our donation.  As Pippa’s mum, I will continue to add to this regularly.

4 Comments »

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 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.

12 Comments »