An Edinburgh schoolboy spent almost nine years of his life in and out of a local hospice after being diagnosed with a brain tumour when he was just an infant.
The family of Aaron Ross have shared the huge impact the CHAS hospice made on their lives after their son went through a host of treatments and end of life care.
Born in October 2010, Aaron had appeared to be a happy and healthy baby until he showed concerning symptoms at around three and a half months old. Going off food and losing a significant amount of weight, tests confirmed the devastating news that he was suffering with an inoperable tumour.
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Despite going through chemotherapy, Rachel and Michael were told that Aaron was not responding to treatment, and were introduced to the Rachel House hospice when their son was only seven months old.
Speaking about the experience, Rachel said:“We really didn’t want to go to a hospice. We just immediately thought of death and we couldn’t fathom that our beloved Aaron was at the end of his short life but we quickly realised that this was the best place for us to be.
“We spent the summer at Rachel House. A summer I’ll always remember. We were able to spend quality time with our new baby and enjoy some home comforts. Much to our surprise, Aaron started to get more responsive and improve. He’d smile and make noises when he found something funny. He was the happiest boy.”
Appearing to improve, test results showed that Aaron's tumour had stabilised, with the family able to return home and saw Aaron only admitted to hospital a handful of times in the year that followed.
However, just a few months after welcoming their second child in 2013, Aaron's tumour increased and with chemotherapy again unsuccessful, surgeons were able to fit him with an external ventricular drain to relieve pressure on his brain.
The couple’s third child, Abagail was born in 2017 and the help from CHAS at Home allowed the family time to bond and to adjust; do normal things like going out for dinner or taking the girls to the cinema.
Tragically, in 2018 Aaron's health again took a turn for the worst, with his condition continuing to decline until he passed away at the Rachel House hospice surrounded by loved ones in 2020.
Allowing the family to stay in the hospice until after his funeral, Rachel shared that the charity provided an unbelievable service to make not only Aaron's life, but the time after his death, as supported as possible.
Rachel said: “During Christmas 2018, we knew Aaron wasn’t right. He was experiencing a lot of bowel problems and he was very temperamental, which wasn’t like him, and even more sensitive to noise. He said another scan and the tumour had increased in size again. There weren’t many options due to chemotherapy not working in the past and the position and size of the tumour.
“Throughout 2019, we stayed in Rachel House often. Aaron had multiple infections and experienced his first seizure. But despite a tough year, we were able to spend Christmas 2019 at home. We were so optimistic about the year ahead. We thought 2020 will be our year. We didn’t know it then but that would be Aaron’s last Christmas, and 2020 would turn out to be the most heart-breaking year of our lives.”
“Aaron was rushed into hospital mid-January with another infection; fluid was unable to drain and he was non-responsive. He continued to have seizures and he was going downhill very quickly.
“Aaron spent his last hours with his whole family around him. His grandparents were able to stay at Rachel House and nieces and nephews came in to say their goodbyes. His very last words were ‘do you want to play I Spy?’ which sums him up. He was a little character; playful and fun and just loved everyone around him.
“Being able to be where Aaron was, was everything and more. We could say our last goodbyes and know that he wasn’t alone. He was tucked in with his dinosaur duvet and hearing the nurses talk to him and play his favourite music, gave us comfort.
“CHAS is like an extended family; everyone from the housekeepers to the kitchen staff. The nurses we had in our home looking after Aaron were once stranger but they became Aaron’s best friends. We made some incredible memories with CHAS which will last a lifetime.
Michael said: “When your child dies, it feels like the world should stop. And the world did stop. It gave us that time we needed as a family and meant we didn’t have to put on a brave face.”
This week marks the launch of Children’s Hospices Across Scotland’s 2022 festive fundraising appeal, urging Scots to support dying children and their families this Christmas amidst the ongoing cost of living crisis.
With costs continuing to rise across the country, everyone is feeling the pinch this festive season. But speaking on their appeal, the charity said for the families they support, that challenge is even greater.
Despite their incredible resilience, many CHAS families have to contend with being forced out of work to care for their children; deal with the daily struggle to pay for fuel to attend various medical appointments; and live in fear of blackouts as well as deal with the soaring costs of food and energy bills.
Monica Currie, CHAS’s Family Income Maximisation Officer: “Christmas is a daunting time for many CHAS families. This year many families have not had the time and capacity to think about the festive period because they are focused on how to pay their bills. For many, Christmas memory making will have to wait until next year.
“Working families who are not in receipt of benefits are particularly worried about the cost of living crisis and the challenges they face to reduce their energy bills: humidifiers, suction machines, ventilators, oxygen concentrators all use up a tremendous amount of electricity and it’s not something that can be rationed. Families have also mentioned the risk of ‘blackouts/power cuts’ and the threat of their energy being cut off if they can’t pay their bills. This is incredibly frightening.
“In the run up to Christmas, many families are likely to experience further financial hardship so we are calling on anyone who is in a position to donate to do so to help us fulfil our aim of supporting all children and families across Scotland who need our help.”
You can find out more on how to support the charity here.
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