OUR FAMILY HAD T0 STAY ISOLATED FOR A YEAR... FIND OUT HOW WE DID IT
‘It was sad watching life go by... but it was just something you had to do’
Lisburn woman Sasha Gillespie (42) and her family had to isolate themselves for around a year after her daughter Hannah (13) underwent a bone marrow transplant. Hannah’s dad is Mark (47) and she also has a brother, Ryan (11), and sister, Zoe (9).
Hannah had bone marrow failure when she was a toddler and was also diagnosed with a hole in the heart and a condition called Fanconi’s anaemia.
“She had been sick for a long time and we were always conscious of infection because she was ill since she was a toddler and had bone marrow failure,” her mum Sasha says.
“She was blood transfusion dependent and her body was stopping making blood cells. She had life-threatening nose bleeds and her bone marrow wasn’t making enough red blood cells to replace the blood that was lost. She would have had platelet transfusions to make her blood clot.
“Then when they could no longer sustain her in blood transfusion, she went to Bristol Royal Hospital for Children for a sibling cord blood transplant. When her sister was born, they saved her cord blood and banked it and kept it as the perfect stem cell match.
“Hannah needed intensive chemotherapy which obliterated her immune system entirely. They have to get rid of all her bone marrow and her T cells as her immune system would have rejected the stem cells, so she had no immune system for a long time.”
The threat of infection, even by minor childhood illnesses such as the common cold, was a real worry.
Sasha explains: “She was in hospital for three months and everything had to be sterile.
“We weren’t allowed to open a window and she had to be in a positive pressure room. We had to change and scrub in to go to her bedside.”
After being discharged from hospital, Hannah had to remain in Bristol for the next three months in special accommodation, where she had to have a completely clean diet with no chilled food or tap water.
“We had to keep her in, and if we went out we had to be very aware of infection and were hand washing — so did her brother and sister,” Sasha says.
As Hannah’s blood count began to come in, Ryan and Zoe were able to join the rest of the family in Bristol and eventually the family were allowed to go home — but they had to live under strict conditions to protect Hannah from the threat of infection.
“Hannah spent 12 months on immunosuppressive drugs and she wasn’t able to go back to school — she missed most of her P3 year. She wasn’t allowed out of the house — she had to have a home school tutor,” Sasha says.
“We really had to be very careful around any kind of coughs and colds — she is on antibiotics for life. After we got home the other two children did go back to school and nursery, but they weren’t allowed to go on playdates or to go to big crowded events.
“It was a very upsetting time — we always had to be very vigilant about infection and that can be quite useful now, with the discipline of remembering to wash your hands constantly.”
Sasha says the family were very isolated, but the experience has helped to build their resilience.
“It was sad watching life go by. I was sad for the children who were not getting a normal interaction with their friends,” she says.
“But it was something that you had to do. It wasn’t something we questioned, we got on with it.
“We did what we had to do and we made it work.”
Part of the coping strategy was to make sure there was always something to look forward to, says Sasha.
“We were writing lists of things that we would plan to do in the future, simple things like Hannah wanting to go out with her primary school friends, just on normal soft play trips — very average normal things that you take for granted until you don’t have them, trips to the cinema, swimming.”
The other strategy was to come up with ways round the isolation. For example, it was Ryan’s birthday when the family were staying in Bristol and they hired a party play bus just for the family.
“I think we learned that we are a tight-knit wee unit. We got by, we did what we needed to do and we kept everybody’s spirits rallied as best we could,” Sasha says.
“We tried to have something to look forward to each day and we tried to keep a structure each day in terms of mealtimes and not letting the day drift on.
“We did a lot of indoor things like painting and baking buns, we played board games and there were some apps that the teacher gave us, like stargazing apps.
“I think we realised that the most important thing is keeping your spirits up and accepting that’s the way it is.
“You just have to take it day by day.”