Life on Elephant Ward for seven-year-old Archie and mum Aneta
28 Mar 2023, 4:12 p.m.
The new Children’s Cancer Centre will help children like seven-year-old Archie. His mum, Aneta, describes him as a smart, caring child who loves to play football and adores anything electronic.
In October 2022, Archie started having chemotherapy at GOSH for acute lymphoblastic leukaemia (ALL).
His treatment will continue for the next two to two and a half years. Aneta hopes that one day, this will all be a “distant memory”.
Below, she shares with you their journey so far.
Finding out Archie has leukaemia
At the beginning of 2022, Aneta noticed Archie seemed unwell “more often” than usual, with pain in his legs and ribs, which “made breathing difficult”. Then, in October, his health significantly deteriorated during a half-term holiday.
“He got an ear infection on the Friday before we set off. We took him to A&E, and he was given antibiotics, and we were given clearance to go for our holiday.
“We travelled to Bournemouth, but he just couldn’t sleep. He was really in pain; I couldn’t remember my son ever being in so much pain.
“In the morning, he said, ‘mummy this really hurts’. I looked behind his ear, and the bone was red and significantly enlarged.
“I took a picture and sent it to his GP. She immediately directed me to drop everything, just go to the hospital.
“We went to A&E. He had been complaining about pain in his legs but at that point it just became unbearable, he could barely walk. I had to pick him up and carry him.”
A&E doctors quickly diagnosed Archie with mastoiditis. This is a serious bacterial infection that affects the mastoid bone behind the ear. They then asked Aneta a few more questions about Archie’s health before transferring him to another hospital for blood tests.
“We were told at 11.30pm that night that he has leukaemia – acute lymphoblastic leukaemia (ALL),” Aneta says.
“It evolved extremely quickly from an ear infection, which spread to the bone behind his ear, which is a very rare case.
“But now, with hindsight [and] how much I know about leukaemia, I know at that point he must have had no immunity – this is what leukaemia does, it kills immunity, that’s why it just spread like a fire.”
The beginning of Archie and Aneta’s GOSH journey
Two days later Archie arrived on GOSH’s Elephant Ward, which cares for children with cancer.
“That was the beginning of the journey,” Aneta says.
“Arriving at GOSH, I was relieved. I know that GOSH is number one in the world for this treatment. But I was also a little bit apprehensive.
“The first couple of days were hard, but then I got to know the people here. Dr Rao and her team, Helen and the girls here are genuinely amazing.”
Initially, Archie used a wheelchair at GOSH due to the pain in his legs.
“That is a big symptom of leukaemia because that is where the bone marrow is, and when the leukaemia cells spread out it becomes extremely painful, and they just can’t walk. He was immobile for a good few months,” Aneta explains.
Aneta promised Archie that, during treatment, she would “not leave his side” until he was comfortable for her to do so. She is grateful to work for a company that allows her to continue working from GOSH.
The first six months of intense chemotherapy
Archie soon started chemotherapy at GOSH.
“The first stage lasts six months, and the whole programme lasts two to two-and-a-half years,” Aneta explains.
“First it was the port insertion, which is embedded in his body in order to administer chemo and do the bloods with minimum intervention to his veins.
“From a parent’s point of view, you have to look at your child being pricked – bloods, something else, investigations, another thing. This is very hard for a parent to watch, because it looks like a lot for anybody – for a grown-up, [let alone] a little child – to deal with.
“I don’t remember the details of the treatment; I was just very concerned for the well-being of my son. I was very concerned with all the side-effects.
“I understand, like every parent, that it has to happen... You know treatment is not friendly on them, but it’s essential.”
A couple of years away from “normality”
Archie is now coming towards the end of the first six months of intense treatment.
Today he’s a “regular stayer” at GOSH, but he sometimes goes to his local hospital if there’s an “emergency” and community nurses sometimes visit him at home.
“When he has to be hospitalised for infection or something, that is at the local hospital. But the treatment is at GOSH,” Aneta explains.
“Because of the port, which is embedded in his body for the next two years, there is the possibility of attracting infection into his body. If my son develops a fever, I only have one hour to get him to the hospital before it can be detrimental to him.
“The problem with leukaemia is that it is blood, and blood goes around the body very quickly, so any virus, any problem, it will get carried and spread immediately – we are talking minutes. So, for another two years and a bit we cannot be away from the vicinity of a hospital, this means even if we travel to our holiday place then the local hospital has to be notified.
“So, we can only regain his freedom when he’s clear and that will be after a couple of years, that’s when we can have proper holidays, when we can actually live life a little bit, get some sense of the normality we used to have before he was diagnosed.”
Even though life has changed significantly for Archie, he is occasionally able to go to school.
“On a good day he goes, on a treatment day he can’t go,” Aneta says. “But his school is extraordinary, very supportive.
“When he is at GOSH his school gives him materials and the nurses will print them out for me and I can sit and do things with my little one, so he is not missing out.
“I think the beauty of that is that everyone works as a team, so it’s ‘Project Archie’ and we all work together to make sure it is a successful project.”
“He feels comfortable here, and that is such a blessing”
Over the last six months, Elephant Ward has become like a second home for Aneta and Archie.
“We can bring our own things, we can make this cubicle as close to home as possible, and emotionally this is quite extraordinary,” Aneta reflects.
“It feels like being at home away from home.”
As Archie has gotten to know the staff at GOSH, he’s become more comfortable being on his own from time to time.
“He has gotten to know the nurses and they are so nice, and he gets great comfort from the fact that he is supported.
“He loves being here, he feels comfortable here, and that is such a blessing.”
As well as the nurses, Archie also spends a lot of time with GOSH’s Play team
“It’s wonderful, they play games, they bring art and crafts and also they distract my little one when he is scared, for example of getting injected or something similarly unpleasant taking place,” Aneta says.
“They distract children, that is extraordinary; when children are scared of being poked with a needle or anything else they come with little toys and they distract them and it works!
“They have a very big function here, they actually make children smile, and obviously for any parent to see this we are also happier. It’s extraordinary the way this whole system works.”
Staff at GOSH have not only helped Archie, but also Aneta.
“At GOSH, you have people who genuinely help you, the nurses they look after not only the little one, but also me, my emotional well-being,” she says.
“All our wishes and desires are taken into account, it’s a really incredible experience.
“I had help dealing with all the other things which he went through as a part of leukaemia. I had support to get a blue badge, and to get whatever I might need to make my life in this madness of leukaemia as easy as possible. It’s a very hard experience, but they are doing everything they can to make it as easy as possible on parents, on children, on everybody.”
“We grow through it, and we move on” - Aneta’s hope for the future
Aneta hopes that this will be a “distant memory” in a couple of years. Right now, she can only plan for a few days at a time.
“My hope is for this to be a distant memory of marvellous people and life-changing events that make people better, stronger – it actually makes me believe that there are very nice and kind souls in the universe,” she says. “That’s my hope: that we grow through it, and we move on, but we don’t have to worry about it ever again.
“But in reality, we cannot plan for more than days at a time, because it’s from blood test to blood test.
“So, what one hopes for is one thing, but in reality, one cannot make any plans for more than a few days, not in the current situation.
“I really hope that it’s going to be over and a distant memory, and I will remember how wonderful people were throughout the journey, how professional, how incredible. Mostly, I hope that I don’t have to go back to this ever again.”
Supporting a new Children’s Cancer Centre
For Aneta, it’s “always worth” supporting a place that “provides people with hope and a chance for a better future.”
“Families who go through this type of experience know why it is important [to support GOSH] and they would do anything to save other children from pain, because if it wasn’t for GOSH possibly our children would not have a future,” she adds.
“It’s all about [children] coming back stronger and healthier and actually carrying on with their lives, just to be able to have a proper life one day - these are all noble causes.”
Based on her experience staying at GOSH, Aneta thinks that having dedicated family rooms and balconies in a new Children’s Cancer Centre would make a big difference.
“At the moment, parents need to leave the ward, go somewhere else to have a conversation, or hope that there is nobody in the kitchen – so if they could have that space, it would definitely be helpful.
“If a family is confined together in one place, if that place is small or looks like a hospital with millions of little switches and so on, it’s not really ideal. So, if the room can be big enough so the family can hang around together, and have a small dining table, then that is a blessing, that definitely aids recovery.
“Children here go through so much, so many different interventions – being woken up at night because observations need to be done every two hours or four hours – so anything that can be more comfortable for them is just compensating for all the hardship they have to go through.”
Aneta also recognises the new centre’s potential from a layout and infrastructure perspective.
“GOSH, at the moment, is like a maze,” she explains.
“You have to go to Block A, go to the end, go left, go to Block B, then Block C – so that definitely has a bearing on a child that is really unwell and needs to get somewhere. And it’s not very easy to squeeze into the small lifts.
“Absolutely everything here is extremely advanced from a treatment point of view, and it would be lovely to have advanced infrastructure – that would save time, that would save hassle, that would save stress.
“The best doctors and the best staff deserve the best tools there are, and children in such circumstances deserve the best treatment and best quality of stay possible, that’s my view.”