What We Do | Calums Cabin

Since we began fundraising in 2007, Calums Cabin has grown from being a small charity run by the family and a few volunteers to being one of Scotland’s best supported charities.

We are still a relatively small charity, and the Covid-19 pandemic has thrown up challenges we never imagined we would have to deal with. Having to cancel all our fundraising events was a devastating blow, but we have found alternative ways to fundraise, through virtual events, online auctions, opening a pop-up shop in Rothesay and an e-commerce site selling new items donated to us. This has allowed us to continue to have families staying in our flats whilst they have a child enduring cancer treatment. We understand the added stress for families who have to leave behind their support network of friends, family and their homes for weeks and months on end while their child is enduring intensive treatment at a main treatment centre.

A message from Caroline, Calum & Jenna’s mum and Chairperson of the charity

Our aim is to offer as much support to our families as we can and as well as providing accommodation, we also provide mindfulness sessions to support the mental wellbeing of our families which can often be overlooked. Read more about this below. In the future we would like to help more families by providing more accommodation for holidays and for long term hospital stays, this may also include looking at other cities where support is needed close to hospitals. We are also grateful to our families who are willing to share their stories with you, please read Amanda and Francesca’s stories below. These are the stories which inspire us to keep doing what we do.

Joel’s Story – A letter from Amanda, Joel’s mum

“It’s hard to put into words just how grateful I am to you for looking after my family during our time in Glasgow and for letting us stay in your luxury flats.

Here is a little background of how we ended up in Glasgow:
Joel was first diagnosed with ALL Leukaemia on 28th of December 2016 at 5 years old, I was heavily pregnant with his little brother and our world was turned upside down and we began this journey together. After 9 months of intense chemotherapy (regiment c) Joel started maintenance and was to continue until 4th May 2020, at this point he had a 90% chance of survival!!
Unfortunately, he didn’t even get a year into maintenance, when he relapsed on 29th August 2018. He started another gruelling chemotherapy protocol and was put on the bone marrow transplant list. We were lucky his little brother Jaden was a match, and he was to give his marrow in March 2019. We didn’t think he would make it to transplant on many occasions as he fought so many infections. We were told on 2 occasions to prepare ourselves. But in February 2019 he was ready.

We managed to get a room in the Clic Sargent house, which was nice and close to the hospital which was great, but on 30th June were told while Joel was on life support that they didn’t know what was wrong and there wasn’t anything else they could do. We just waited by his side praying for a miracle again. There was one possibility that he had a condition called TMA brought on by the transplant. The prognosis wasn’t good but he was given a special drug and one week later taken on life support. It was touch and go for a while but in September 2019 we brought Joel home to Aberdeen.

In October we returned for a routine check up to hear his platelets had crashed and that Joel had either relapsed or had severe graft vs host disease. He had already been diagnosed with gvhd of the skin and gut but now it was attacking his organs and platelets.

The only treatment now was high dose steroids to stabilise the gvhd but it wasn’t enough. Joel had more chemo and if they could just get the platelets up to 50 for a day he could go to surgery for a new line and start ECP treatment. We were told with the nature of Joel’s gvhd that we could face at least 3 months more in Glasgow but up to 1 year.

It was at this point one of the consultants suggested we try Calums Cabin for accommodation. We were happy at Clic but 5 in one bedroom and a naughty toddler was proving to be such a challenge!

Caroline rang me the very next day and I had the keys within 24 hours, I believe it was the first flat of Calums Cabin in Minevra Street and I have to say we just loved it there!! Pre-Covid we used to walk up Argyle Street after hospital, watch as people walked down to the Hydro, it was just a lovely place where we could be a family again. We were at hospital every single day, but it didn’t stop us having fun.

In February 2020 we had some dark chats with the consultants. Joel wasn’t improving with the treatment he was getting so the decision was taken to start a new drug only licensed in adults, but they needed to act fast! He started the new drug whilst still on a high dose of steroids and ECP and a cocktail of other medication. It was around the same time we were offered the move to the Penthouse apartment in Jordanhill!

Wow was an understated reaction to this beautiful temporary home. It was just so big and had outdoor space everything and more you could want! The boys had space to play, I had space to bake, we did have some lovely moments together. Even when lockdown kicked in we were together and happy. Calums Cabin and the luxury flats gave my family a chance to be a family!  We had been split up a lot over the last 4 years and this was the longest period of time we were able to feel normal and even though Joel often hospitalised we had the comfort of being so close to him.

For this I cannot thank you enough. As I write this in October 2020 when we had our first visit home to Aberdeen, times when I didn’t think it would happen. Joel remains ok, with the hope that when his drugs are weaned next year that he will be cured. We continue to keep the hope and take each day as it comes.

If it wasn’t for Calums Cabin, I don’t think we would have made the memories we did over the last year! I send you all my love in the world.

Amanda, Dave, Ayran, Joel and Jaden xxxx

Sophia’s Story – A letter from Francesca, Sophia’s mum

“We first became part of the Calum’s Cabin family over 2 years after our daughter Sophia was first diagnosed with leukaemia, she had already relapsed, had a stem cell transplant, and spent about 13 months in hospital, several months at a time. She was home and cancer free but was living with a brain injury and an autoimmune blood disorder, complications of her treatment, so life had been rough and was still very hard.

We arrived at the cabin and were just blown away by the gorgeous setting. I can’t explain the emotions we felt as we pulled up in the car. And that was before we had seen inside the house, all its facilities and the amazing welcoming touches that make it feel like a really special treat. It was our first family holiday, as her little sister was just a baby when Sophia first fell ill, so the kids were high with excitement! It was impossible to book things normally as at any moment a high temperature or anything else could land you in hospital. Beautiful Bute, as Sophia called it, is close enough to hospital but feels like a whole world away. We had a wonderful week, full of special memories and family time spent on the beaches, around the town, and in the cabin.

Unfortunately, after some time when Sophia’s conditions had begun easing a little, cancer came back. Sophia was diagnosed with an incurable brain tumour, the same type that Calum had. We spent our last family holiday back in the cabin, and I will never be able to thank Caroline, Duncan, Jenna and of course Calum enough. Sophia spoke about Calum as if she knew him as the charity had made a such a huge impact on our lives. I knew Sophia would have wanted to do something for them, so we collected donations at her funeral service to try to thank the Speirs family in some small way.”

Mindfulness Classes

The Covid-19 pandemic meant that very sadly, we were unable to provide support in the form of holiday accommodation (our near hospital flats have been open and as vital as ever throughout). However, the pandemic has required us to find new ways to support families. Towards the beginning of the first lockdown, we secured the services of a superb coach to provide zoom based mindfulness sessions. We are now providing six weekly online group mindfulness sessions plus an average of between four and ten one-to-one sessions, including bereavement support, each week. These sessions sustain individual family members and assist them to deal with the stresses they face advocating for their child. The feedback has been so positive that we have extended the service to include sessions for our volunteers, many of whom are also isolated.

The response to this support has been overwhelmingly positive. Over 120 people regularly engage each week in these sessions which have been running now for almost a year. The numbers remain consistently high and the feedback from so many of the attendees leads us to know that this is a service that has become a valuable tool in their armoury of ways to make living with childhood cancer a little bit easier.

Participants tell us they want these sessions to continue. With so much uncertainty around the ongoing and longer-term need for social distancing measures, we feel mindfulness is now an integral part of what the charity provides.

Here are just some of the many positive notes of thanks that we have received from participants.

“With my child being ill and lockdown, I just wasn’t coping at all, the sessions have helped me so much to see things more clearly and cope so much better”

“Mindfulness sessions feel like a breath of fresh air”, I am feeling lighter and can cope with lockdown and shielding so much better.”

“It really helps me keep perspective. Thank you so much … it’s definitely helped to keep me sane and stay grateful in life instead of bitter & resentful.”

“Mindfulness has been a lifeline for me just now, my way of coping”

“I so look forward to my sessions each week, in the dark days I now have tools to help me cope.”