I had always known the name Bear Cottage – it was one of the choices where you could do your ‘volunteer day’ when I worked for large corporations. Little did I know then that I would become a lot more acquainted with this special place. 

Back in early 2017 I had just retired; I was a grandmother to four happy, healthy children. My seven year old granddaughter, Carys started to experience headaches and was referred for a routine MRI. Later that day Carys was diagnosed with a brain tumour. The tumour was inoperable; there was no treatment. Carys was diagnosed with DIPG – Diffuse Intrinsic Pontine Glioma – brain cancer located in the brainstem (pons). The prognosis was that Carys had about nine months to live. 

She had thirty sessions of radiotherapy to shrink the tumour, which worked well, after this Carys seemed quite well. But waiting for your child to die was NOT an option. We took Carys to the UK for a trial being held in London. At best these trials are only experimental, they do not offer a cure. But if we could buy more time, there may be a breakthrough, a miracle. That’s what HOPE is. However, the relentless cruel disease spread. Her symptoms increased. We brought her back home to Sydney and our beautiful girl passed away, 15 months from diagnosis. She was aged eight. She passed away at Bear Cottage. 

Around four months later I was invited to attend the Bear Cottage Grandparent’s Retreat. I didn’t really want to go. It was all still very raw. I felt isolated and angry. Why did this happen to our family? Only 20 children a year are diagnosed with DIPG in Australia. I needed someone to talk to and Bear Cottage was a connection to Carys, so I went along not knowing what to expect. 

I cried a lot, I don’t think I offered anything positive, but others did, and I needed that support. There were some bereaved grandparents and others who were still dealing with grandchildren having serious illnesses. Many with ‘rare’ conditions. It is not a club anyone wants to belong to but here were people who understood. There was no pressure to do anything, it was a relaxing and supportive atmosphere. 

The facilitators know each person’s story and they are wonderfully reassuring. We talked as a group, we talked privately, we created a personal ‘story’ around our different experiences and even had fun together. I came away feeling I had been amongst friends, I felt less isolated. Even knowing what to say when people ask, “how many grandchildren do you have?” They’d all been there.

I highly recommend this wonderful program to anyone who finds themselves in this position. I have recently attended for a second time and met some familiar and new faces; it was so good to be back amongst others who ‘know.’ We laughed a lot; we played Charades which sounds cheesy but it ended up being hilarious. And speaking of cheese . . . (well that’s a story for another time!)