Katelyn Reilly. Photo: Adrian Donohoe
Katelyn Reilly. Photo: Adrian DonohoeView More Images
"Lumps. Then terrible pains,” says Tracie Reilly. “They thought it might have been colic. But on Easter Sunday, her ears swelled up, there was bruising with it.
“She had a lot of pain all over, this was after a few weeks of these little fatty lumps on her skin, on her forehead.
“We rang the doctor on call’s office and just by the symptoms we described they said to go to A&E straight away - bypassing the doctor on call.
“We went to the PAU [Paediatric Assessment Unit] in Cavan and they took bloods. They probably had an idea, and sent the bloods to Crumlin. Dr Ann Leahy [consultant paediatrician] was fantastic, Crumlin came back with a diagnosis of leukaemia. It was a form called ‘ALL’ - Acute Lymphocytic Leukaemia.”
The words had obviously not yet sunk in but the family wasn’t given any time to dwell on them - no referrals, no googling, just get moving.
“We, Gerry, Katelyn’s father, and myself were given half an hour to pack up our stuff and go to Crumlin. It was that fast but the ambulance crew were great.
“We had no idea, no inkling before that. We were brought up to St John’s [the cancer ward at Crumlin Children’s Hospital], which I had never heard of. I never knew there was such a place, but they are fantastic. It really hit home when one of the Cavan nurses girls told me to ‘prepare for a long road’.
“Then... I saw the signs on the ward: ‘Oncology’, ‘Haematology’... all these sick children. I went into it completely blind, when I look back.”
“Katelyn had treatment the next day. Those girls on that ward are great, though. They are used to parents coming in in a state of shock... I was definitely in shock.
“See, there were two to a room, two beds, because of the risk of infection there couldn’t be any more than that but there was another patient there with her mother - I never got her name (everyone on the ward would know Katelyn, you see, I’d consider them like family now), but I never got that woman’s name to say thanks - at the time I was probably hysterical for my daughter and she probably knew what it was like and put an arm around my shoulder and gave me a cup of tea and a bun.
“That was just a small thing but everyone was like that, all the staff, with me, at the time Katelyn was three and a half months old.
“I remember thinking how it could have come to this? Trying to figure it all out, couldn’t eat... leukaemia.
“In Katelyn’s case, she didn’t leave the hospital for five weeks... in that time, because of the chemotherapy, they were vulnerable to bugs, highly vulnerable, infections - all those children are.
“She had C-diff [C-difficile - the potentially fatal hospital superbug], then the rotavirus [the most common cause of infant gastroenteritis] and then the treatment... it was very hard on her little body.
“Each chemo session is different, so with all that - C-diff, treatment, rotavirus - it’s isolation for weeks, we couldn’t leave the room... which is another thing.
“You’re not just dealing with the condition, the pain, you’re also dealing with being stuck in a room, for five weeks. The staff made is as good as it could have been, only for them I don’t know...
“Then, seven months of being in and out, for observation, dehydration, the treatment, all [chemo treatments] are horrible but some are more severe than others, and there’s a lot of drugs - painkillers, chemo drugs, eight months of them.
“During this time [the following eight months], there was another diagnosis. She should have had infant leukaemia, but for whatever reason, possibly her genetics, she didn’t. With ‘ALL’ [different to infant leukaemia] there’s a ninety-five per cent success rate but six months after the first diagnosis, then it was infant leukaemia, which is harder to cure. Even though there are protocols to cover that treatment, it was a whole new diagnosis.
“Today, I’m the main carer, but we all help out at home twenty-four seven because of the risk of infection. They drill cleanliness into you at the hospital, we’re always washing our hands here like we did in hospital, for the safety of the kids.”
“After the eight months, there was a bone marrow test, they do this to see what cancer cells are still in the body, with a view to transplant. The sample was sent to England, which took three weeks.
“The test in England is just more detailed, super-microscopic. Even though, Katelyn was in remission, the tests came back saying she had relapsed.”
The news must have been a hammer-blow to the family, who were not expecting it due to a decrease of cells in the broader test done here.
“The genetics had changed and it was now ‘AML’ [Acute Myeloid Leukaemia] a rare form of it, very hard to cure. very unusual, especially in babies.
“Professor [Owen] Smith in Crumlin said: “Tracie, look, the thing is, now she has ‘AML’, for a bone marrow transplant she has to be in remission.’
“The outlook was bleak.”
“He said they could give her ‘Flag’, a five-day treatment, a very hard one, of chemotherapy, should get it into remission. It was a scary time. I remember thinking ‘after going through eight months, how would five days do it?’
It did, though. And a transplant looked likely.
“That was the happiest day of my life,” says Tracie. “I didn’t think she would make it. She was due for the transplant on the twentieth of December and we had a donor. On the ninth, she was due in for a ten-day conditioning for bone marrow.”
But then, another set-back for tiny Katelyn.
“The donor was unable to donate at that time, at the very last minute. He was a German donor, but he thought it was too close to Christmas for him to do it.
“I can understand that, I can, donors are volunteers, I understand, the donor who did save her life was found in Poland some time after.
“The nurse went over to Poland and got the marrow and the hope was she would be ‘one-hundred per-cent donor’.”
The phrase might not sound a good one, but the marrow needs to take ‘100 per cent’ to be most effective.
“It worked. one-hundred per-cent. For example, ninety-six, ninety-eight per-cent is good, but there are still some cancer cells in there, you see.
“So, in the first year of the transplant, you are constantly in and out, checks-ups constantly to see it’s still one-hundred per-cent.
“AML can come back. Any one of them can relapse, that’s why they need more money in, for lab work, research, resources... she’s good and at home at the moment.
“From Easter to January was the first part of it, then from January of this year to just three weeks ago... but things were going wrong, after the transplant.
“She had fluid in her lungs, she was in the ICU in Crumlin four times, ventilators, oscillators... twice had pneumonia... all that was up until three weeks ago... It’s a miracle to be home.”
“She had a lung biopsy six weeks ago, because eight weeks ago we got home for one day and went to Cavan General Hospital. “Her lungs had filled up again, again the ambulance, everything, a biopsy on the lung in Crumlin, fibrosis - a scarring of the lungs from all the chemo - she’ll never have perfect lungs and will be on oxygen until her teens. She couldn’t swallow, her swallow was damaged, too.
“Then mucositis, vomiting blood, nosebleeds, two weeks solid of it, from her mouth right down to her bottom, the chemo had eaten away at her digestion, the food and medication was going into her lungs instead of her stomach, so now there’s pre-digestion food before feeding. She’s been knocked about but she’s still smiling.
“She’s such a fighter. She’s such a tough little nut. It’s scary, but family and friends and the staff are towers of strength.
“I’ll probably worry about Katelyn for the rest of my life, there is no real ‘all clear’. It’s scary, I didn’t realise how bad things were out there. Our whole lives have changed, if it wasn’t for St John’s, she wouldn’t be here because her case is one of a kind, like no other child in the world, her case is to be printed in medical journals so if some other child is in similar trouble the research will help the treatment. She’s a little angel.
“She’s, obviously, not had the same development, physically, as other children, in terms of walking and talking but she’s starting to improve, she’s sitting up, her brain is great, thank god, one-hundred per-cent.
“But it’ll be tubes for a while, we’re just playing it by ear, the lungs will grow, when fully grown, until then she’ll be susceptible to chest infections but if it gets worse they can be ventilated. “It’s brilliant now to be in St John’s as an out-patient because it’s been a long, long time. We’re in and out of Cavan and they’re not just going to give her back, they’re there all the way.
“Even with all the knock-backs, the disappointments, when they catch you crying they’ll tell you there is light at the end of the tunnel... because they know there is.
“You might hear about something like this happening to someone else, but it can happen to you, it does.
“At the start, I thought about god and how god could do this to an innocent baby, I wondered that there was nothing up there... but you pray, pray, pray because there is nothing else you can do. It’s up to the research teams, and a bit of luck. But I thank god, the research, the staff that she’s still here.”
“We have to keep this [St John’s] ward going, it’s built on people’s private donations, without that there’s no private rooms, so you have the rotavirus, cancer patients are vulnerable...
“Even now - her older brother, Dylan, is here at home, of course - but we can’t allow other schoolchildren, it’s very, very dangerous. We can go for walks, but she has to be masked, a quiet place is ok, a quiet shop, a quiet restaurant but nothing more... she has to be masked for a year.”
“She can go into Cavan General, and go into Crumlin and she even knows people, she’s quite happy with it. It took three or four days to get used to being ‘home-home’. But when she’s out now she loves it, she’s very happy, seeing all these things that bring more to life for her, they’re all new and she loves it.
“Her strength is growing now because of the bone marrow, when she was in St John’s she was almost floppy, she was like a little rag doll but it’s returning now into her arms and she’s sitting up.
“She’ll give out to me now if she doesn’t want to get dressed (!), but she doesn’t care, doesn’t scare [asked if Katelyn is afraid of the world after so long in hospital], she’s a tough little nut.
“I never realised I would live to see a ward like that, I got such a shock, but only for St John’s she wouldn’t be here.”
When asked for permission
for a photograph, Tracie explains that they already have them. In abundance, at is happens, due to a heart-breaking scene.
“We weren’t sure,” she explains. “We were up in the hospital and we had pictures taken by a professional photographer, about one-hundred and sixty, in the ward, at her bedside, we just weren’t sure if she was going to make it.”
Certainly the staff of St John’s are central to her list of friends-cum-family, but Tracie has a message to all who have helped Katelyn along the way.
“The staff at St John’s, all of them, Professor Smith, Dr Aengus O Marcaigh, the nurses, the tea lady with a word, all of them, were amazing. The people around here, in Ballyconnell, in Newtowngore, the committee for the fundraiser there, Dr Ann Leahy, the nurses and staff in Cavan General, all my family and friends, the Hand to Hand and Aoibheann’s Pink Tie charities, Pauline Clarke in Cavan Equestrian Centre, who ran a fundraiser and Elaine McGeary and family for running the mini-marathon, thank you. Thank you to all who have helped on the way.
“It’s day-by-day. We’re working on it and we’re still here.”
The St John’s Ward in Crumlin is dependent on donations to finish the ward to state-of-the-art standards. To help ‘Fix Crumlin’ locall 1890 507 508 or log on to www.fixcrumlin.ie.
Tracie is also part of the Light it Up Gold campaign, which, in September will light up landmark buildings around the country in gold to raise awareness about children fighting early cancers.
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