Aila’s story: ‘We’ve packed our life up living here’

After noticing their four-week-old daughter Aila didn’t seem well, her parents started going back and forth to the doctors. After several appointments and visits, they received the news that then-four-month-old Aila had leukaemia and would need to start chemotherapy treatment. Aila’s family have been in hospital ever since. 

Aila is Roisin and Jason’s firstborn daughter and the parents have been struggling with the reality that all of her firsts have been in hospital. And now, they are looking at celebrating her first Christmas in hospital too. 

“At about four weeks old she got a cold and then that cold never went. She was struggling with breathing, her chest was sucking in. We started to go to the doctors at about 6 weeks old because it hadn’t gone. We were admitted to Poole hospital and they just kept putting it down to a snotty nose. They put a scope down her nose to check why her breathing was so bad but they couldn’t see anything. This went on for four months until we got a diagnosis.  

“We weren’t supposed to have an appointment until the end of September but there was a cancellation on 22 July. We walked in and Aila’s eyes had protruded forwards, you could see there was pressure behind her eyes. She had a lump on the top of her head that wasn’t going and all other doctors hadn’t noticed. The doctor  sent her off for some blood tests and said they could squeeze her in that day. They told us that if we’d waited until September she wouldn’t have made it and she’d have had a seizure in the night.  

“We went into the blood test at 3pm and at 7pm I got a phone call from the hospital and they said her white blood cell count wasn’t where it should be.” 

Roisin remembers thinking it must be bad news. She was so upset she couldn’t continue driving so had to leave her car and get someone to drive her home. 

“We got into the hospital for 10pm at night, they were waiting for us, sat us down and said, ‘We have a tough conversation for you, we think Aila has leukaemia. You need to go to Southampton hospital immediately.’  

“I think the moment they told us I started to grieve, I felt like I’d lost my baby at that point.”

Aila was admitted into Southampton hospital that night to start medication. 

“We were there Friday night and they thought she wouldn’t make it until Monday. We were constantly getting punches in the stomach. She just seemed too tiny to be in there. When you’ve had a baby your instinct is to always be there and you’re being pushed out the room thinking, ‘I need to be in there’.  

“In intensive care they told us she had tumours on her spine, in her skull and clots in her brain  – she was too poorly for them to work out what leukaemia it was. On day five she had her lumbar p and seven-hour MRI which gave results of AML.” 

Aila, Roisin and Jason were then transferred to the Piam Brown ward at Southampton hospital where Aila started chemotherapy straight away. 

“We’re here for about seven months in total, she has four rounds with ten days of intense chemo and then six weeks of rest. We’re pretty much admitted for the seven months. We’ve packed our life up and given our flat up and we’re living here – we can’t afford to have the flat. I stay with her and Jason goes across and sleeps at the Ronald McDonald house.”  

Aila’s diagnosis has had an impact on almost every aspect of their family life. They have had to give up their flat, stop working and are struggling to keep up with the costs of cancer. 

“With having a baby in here, your first year is supposed to be full of firsts – walk, talk, and now all of her firsts are going to be in hospital – we’re lucky the staff here are excited for Aila but we’re not sharing it with our friends and family. It feels like all of our firsts have been stolen from us. 

“I was planning on returning to work after maternity leave but this has meant it may not be possible – life will never be the same now. I’m going to be scared of being the mum of a child who had cancer. This is who we are as people now, we are ‘cancer parents’.  

“We’re here for seven months and the only shop in the hospital is M&S. You’ve also got the cost of parking if anyone visits us.” 

Young Lives vs Cancer Social Worker, Clare, has been supporting Aila’s family from the moment of diagnosis. 

“Clare is the person I offload to, she gets it and she listens. It’s like a friend you can go chat to – she’s probably been the person in the hospital who has got me through this. 

“She got us a few grants for toys and nappies for Aila. When you initially come here you have an overnight bag, we had only packed two t-shirts each so the grant meant we had fresh clothes and toiletries.” 

Author: Nathaniel Newman

Posted on Thursday 24 November 2022

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