My late daughter's final Christmas at Great Ormond Street Hospital felt like 'home'
Christmas for families with young children is usually a joyful time spent making memories and lapping up every moment of festive magic. However, Annu Patel navigated a very different Christmas in 2018 when her seven-year-old daughter Kaiya, who sadly passed in January 2019, spent the festive season being treated for cancer.
The 43-year-old mother from Rickmansworth, Hertfordshire sat down with HELLO! to share how the staff at Great Ormond Street Hospital (GOSH), where Kaiya was treated, made her family feel at "home" during this time and how their kindness brought a sprinkle of Christmas cheer to them all.
support for Great ormond street hospital
Being referred to GOSH
When Kaiya was first referred to GOSH in March 2018, it was not the first time Annu and her husband Ruchit had visited the hospital in Bloomsbury. After having experienced bleeding at the end of her pregnancy with Kaiya in 2012, Annu was induced early.
As a matter of precaution, when she fell pregnant with her second daughter Annika in 2015, Annu had extra scans which, by chance, discovered her unborn 28-week-old baby had an arachnoid cyst on her brain.
"In a way Kaiya's birth kind of saved Annika," Annu tells us. "Without the extra scan and picking up the cyst, we wouldn't have realised the symptoms of extra crying and sleeping could cause damage. We may have put it down to her being a colicky baby."
Having been born at University College Hospital, Annika was referred to GOSH where she underwent three high-risk surgeries as the fluid-filled sac was growing.
Annu says that once Annika seemed to be out of the woods and her condition was stable, they noticed some unexplained bruises on Kaiya's legs.
"She had knocked her teeth while she was dancing a couple of months before, but she kept bleeding from that too," her mother remembers.
"We were blue-lighted to GOSH on the day that we were supposed to go on holiday so our bags were packed – in a way we were sadly ready to be admitted."
Kaiya being diagnosed with high-risk acute lymphoblastic leukaemia (ALL) was a scary time for the little girl and her family, and yet her mother says that the hospital staff instantly felt like family.
"No matter which ward you're in, you walk in and you automatically feel loved, like you're heard and the girls were really taken care of," Annu says. "When Kaiya used to come and visit Annika in hospital, the Play specialist would make sure that she was okay and that she understood what was happening and why I couldn't stay with her at that time.
"Even though Annika was very little at that time, they would always bring things in like sensory toys for her as well," Annu continues. "It wasn't just the patient, it was also the other sibling being looked after."
Annu explains that when Kaiya was admitted she was five and understood more of what was going on compared to when a newborn Annika was being treated for the arachnoid cyst.
The staff would take the time to help a frightened Kaiya understand why she was getting a PICC line or a Hickman line or why bloods needed to be taken or fingerprick tests performed. "[Their patience] was quite reassuring because you don't want to put the kids in distress and I really appreciated that because it was quite hard," Annu recalls.
"We still remember all the nurses and doctors that helped by name, even five years later, and appreciate how much they do."
Supportive staff
The nurses and doctors at GOSH continued to go above and beyond throughout Kaiya's treatment.
"They don't just do their jobs," Annu says. "You can tell that they have this utmost love for what they do and they really genuinely do care about the patients.
"We got admitted at night time and in the morning, the Play specialist - who is funded by Great Ormond Street Hospital Charity (GOSH Charity) - came in and she pulled me and my sister-in-law to the side and asked what kind of things Kaiya likes," she continues.
"We just rolled off a couple of things and by that afternoon, she had brought a couple of those things in." This included a cookie decorating kit and arts and crafts supplies which were also on offer to Annika when she visited her sister on the weekends.
"It was just having that focus on something else other than being in the hospital and being able to focus on doing an activity together brought life to some normalcy," Annu explains.
"It gave us a little bit of time to breathe because it's a lot for us to process and I think adults process it differently to children. It gave us that [time to think]: 'Okay they're taken care of, we can try and digest what's happening and put a plan of action together'."
The staff at GOSH had a positive influence on Kaiya and her family during her treatment which included chemotherapy, radiation, bone marrow transplants, and blood transfusions.
"I think other than doing the blood draws and PICC lines and cannulas, Kaiya was in high spirits," her mother remembers. "She never believed that she was not going to make it."
Great Ormond Street at Christmas
As the end of 2018 neared, Annu tells us that Kaiya just wanted to get back to normal life at school with her friends. "With the bone marrow transplant, she needed to start the conditioning from the middle of August and I promised her that she would be home by Halloween," Annu tells us.
"Halloween came and went and then Christmas came and she just enjoyed all the festivities that were going on. We had to go for a CT scan and when we got back up, the Play specialist was decorating her room with tinsel and putting streamers up on the wall.
"They had put this massive painted aerial on the window and it was those little touches", she continues. "She couldn't go down to see the GOSH Father Christmas but they had sent a video of her with her name and when it's personalised and I've still got that video of her looking at the video of Father Christmas talking to her, that was really sweet."
Annu also explains that Kaiya's nurse Hazel kept peering through the window to drop off a bag of Christmas presents for her on Christmas Eve, and waited for her to fall asleep to bring the bag in.
Annu says: "Not only did they do that one for Kaiya, but they did a couple of presents for Annika as well because we had to spend Christmas Day at GOSH."
Remembering Kaiya five years on
This coming January, the Patel family, which now includes Annu and Ruchit's three-year-old son Kian, will mark five years since Kaiya's passing and they have a set of very special traditions to keep her memory alive.
"Annika buys a Christmas ornament every year that reminds her of something that Kaiya would have liked. So this year we got like a fairground, last year was a pink doughnut and every year we add something to the tree," Annu shares.
"We have a table place setting with a reindeer with her name engraved on it. Annika fills up her stocking and those are the presents that we donate to GOSH or another local charity."
Running the race for GOSH
Annu and her family also show their appreciation for GOSH by honouring Kaiya's memory during GOSH Charity’s annual family fun run, RBC Race for the Kids.
"Annika's done it since she was three. It's bittersweet. It was something that Kaiya wanted to do. She saw the posters, in the hospital and she was like, 'We have to do this every year, we have to do this for other kids'," Annu says.
"A lot of people came to our family's help during that time and so we have a family of 30 people who will come and walk with us on that day and it's just really nice because we all talk about Kaiya and they'll share memories of her," Kaiya's mother continues.
"Annika talks about the last few weeks that she had with her and her favourite moments in the hospital. It's that time of reflecting as well, even though we're trying to do something fun because the entertainment they put on afterwards is incredible.
"It's just nice to have everyone talk about her because I think with grief…it hasn't gotten easier. But it's that one time where I feel like I've got permission to talk about her and it's just nice to have that moment."
Going back to GOSH
Annu and Ruchit have had to go back to GOSH since Kaiya's passing for Annika's check-ups.
The doting mother recalls: "The first couple of times were really tough. [Annika] had just turned four when her first appointment happened.
"Annika says, 'I think we've left Kaiya here, we need to go and check that we haven't left her behind'. So I think it was difficult for her to kind of process Kaiya's passing."
Despite not having personally treated Kaiya, Annika's team was sensitive to her needs and that of the family.
"One of the appointments they said, 'If you don't want to come in, that's fine. We can do an online appointment', which was quite helpful," Annu tells us. "It was weird because even though she had passed away there, it felt like walking into home."
She remembers: "In between the two girls, I had lived there just under a year in and out so it was like walking back home. But it was also quite hard. Walking into the entrance, I can see Kaiya's ward so it's like wanting to go back and just being at the ward, but obviously we couldn't because it's an isolation ward."
Annu and Ruchit have maintained a good relationship with the oncology ward staff and now her dad volunteers for the GOSH charity. She concludes: "They know my parents and brothers and my husband's sisters as well so it's a real sense of community feeling."
GOSH Charity needs the help of generous supporters to bring festive fun to seriously ill children at GOSH, and provide the hope of more Christmases to come. Donate to GOSH Charity’s Christmas Appeal by visiting gosh.org/christmas
