Anita was told she’d beaten aggressive cancer before her husband Simon got the kidney transplant he’d waited eight years for weeks later.
A mum who fought aggressive breast cancer as her husband waited desperately for a new kidney has told of her joy at being given the all-clear – just weeks before he underwent a lifesaving transplant.
Anita Howell, 44, was forced to tell her children Sarah, 11, and James, six – who’d grown up watching their dad Simon, also 44, battle renal failure – that she, too, was poorly when she was diagnosed with cancer in December 2016.
As she underwent gruelling treatment, her ailing husband’s condition deteriorated – prompting their daughter to ask whether Daddy would live long enough to walk her down the aisle one day.
But, in June this year, Anita, a supermarket worker, of Burgess Hill, West Sussex, was relieved to be told that there were no traces of cancer left in her body.
Then, on 9 August, Simon, a retired pathology doctor, finally received the call he’d waited eight years for, and has just undergone a kidney transplant.
Now speaking out ahead of Organ Donation Week 2018, which runs from 3 to 9 September, Anita said: “Even now, this doesn’t feel real. We’ve gone from expecting that Simon wouldn’t be around to see the kids reach adulthood to having a very real chance of him living to see his grandchildren born, thanks to organ donation.”
She added: “Six thousand people across the UK are in need of a transplant right now, and around three a day die waiting.
“I know people don’t like to think about death, but you don’t need your organs after you’re gone, and by donating them, not only do you a save a life, but you transform an entire family.”
When Anita and Simon first met in 1995 as students in north London, they knew his kidneys were likely to start failing in the future.
He’d been born with renal dysplasia, a condition where the internal structures of the organs do not develop properly in the womb.
But, the pair didn’t expect any complications to occur until he was in his 50s or 60s.
Anita explained: “When we met, we knew kidney problems were on the cards, but we thought it would be much later in life – that we would have the 2.4 children and he would be a consultant by then and everything would be different.”
But, as he turned 29 in 2004, Simon fell ill – and was shocked when blood tests revealed he was in the end stages of kidney failure.
Right away, medics began searching for a donor and were thrilled when his mum Linda was a found to be a match.
She willingly donated her organ and, following a transplant in May 2005, the operation appeared to have been a success.
Simon returned to work and, in 2006, Anita discovered she was pregnant with Sarah, who was then born in February 2007.
But two years later, Simon’s health declined once again, and it emerged his transplant had failed.
Anita and other family members were tested to see if they were a potential match but unfortunately, they were the wrong blood type.
By 2010, Simon was in the end stages of kidney failure again. Forced to medically retire, he spent four hours a day connected to a dialysis machine – first at hospital before he was eventually able to do it at home – whilst he waited for an organ to become available on the transplant list.
Towards the end of 2011, the couple were overjoyed when Anita unexpectedly fell pregnant with James, who was born in August 2012.
With Simon’s health continuing to deteriorate though, the birth posed heartbreaking questions about how much of his children’s lives he’d be around to see.
Then, in December 2016, the family were dealt another bombshell when a lump Anita found under her right armpit turned out to be grade three locally aggressive breast cancer.
Anita said: “We had to sit the children down and tell them that Mummy has cancer. We said it was okay to be angry and sad, but that life would go on, so it was okay to still have fun too.
“It was so difficult for them, knowing that we were both sick. It was rare to have a day where we both felt well enough to do something as a family.”
As 2017 began, Anita, who was too ill to work throughout her treatment, started intensive chemotherapy, undergoing six rounds in total.
Her immune system wiped out, she was repeatedly hospitalised with infections – even contracting sepsis twice.
Meanwhile, Simon was still on dialysis as he waited for a transplant.
“We were both under the care of the Royal Sussex in Brighton, so sometimes we’d be in treatment on the same day,” she recalled. “We’d drive down together, then I’d drop Simon off for his dialysis and he’d then come to collect me as I finished chemotherapy.
“All throughout my treatment, I never really had a good day. I was so exhausted. Even when it was just Simon ill, we were limited to what we could do, but now I was too, maintaining that normality was virtually impossible.
“We had to rely a lot on help from family and friends, so we felt it was important to be open with the children about what was happening.”
In May 2017, Anita finished chemotherapy, before undergoing a double lumpectomy – where the cancer and some surrounding tissue is cut away – and having 11 lymph nodes removed at Princess Royal Hospital, Haywards Heath, East Sussex.
Then, in August, she started radiotherapy, having a total of 20 sessions before beginning a course of Tamoxifen, a hormonal therapy drug she’ll need to take for the next 10 years.
Thankfully, in June 2018, a mammogram showed she was officially classed as NED – ‘no evidence of disease’.
“I can’t describe the utter relief I felt to hear those words,” she said. “As a scan approaches, you can feel really anxious so hearing the cancer hadn’t returned was an enormous weight off.”
But the family’s ordeal wasn’t over yet. Ending up in hospital with a serious infection the following month, Simon’s prognosis did not seem as positive.
That was, until the night of August 9, when a life-changing call came.
Anita recalled: “We were sat on the sofa when the phone rang, and Simon answered. I couldn’t work out what was going on, but I could tell something big had happened.
“Then Simon hung up and said, ‘I think I have a kidney.’
“It just didn’t feel real. A friend took him to Guy’s Hospital in London, while I stayed behind for the night to organise the kids.”
She continued: “The next morning, I was going about all these everyday tasks, like dropping them at their grandparents and sorting everything for a drama show Sarah had.
“It was all so normal – but in the back of my mind, I kept thinking, ‘Simon is in hospital right now finding out if he has a kidney.’”
Incredibly, the organ was found to be a match, and on the evening of August 10, Simon underwent his operation.
Coming to visit, Anita was amazed at how much healthier he already looked.
“He seemed so much brighter and more alert,” she said.
“All we know about his donor was that they were a similar age to Simon, but we hope to one day write to their family to thank them for all they’ve done.”
Now, though he is still recovering, Simon is hopeful that the transplant has been successful.
Having had to break so much difficult news to their young children, the couple have written a series of children’s books about their experiences to provide a learning tool for parents going through similar trauma.
Called Meet Lucy and Jack, the series has three titles so far – H is for Haemodialysis, P is for Peritoneal Dialysis and K is for Kidney Transplant.
After raising money via a crowdfunding site to get it published, Anita has just announced a fourth called B is for Breast Cancer, which will be available on Amazon.
They also hope their story will inspire people to sign up as organ donors, sharing their wishes with loved ones.
Simon said: “Even now, this feels utterly unreal after eight years of waiting. It’s like the best present you received at Christmas as a child – only infinitely better. I’ve gone from wondering if I’ll see the children reach secondary school to being able to give Sarah away when she gets married.”
He continued: “It’s hard to grasp how amazing a thing donating organs is. You lose nothing by doing it, but six or seven people gain the world.”
Anthony Clarkson, Interim Director of Organ Donation and Transplantation for NHS Blood and Transplant, said: “This is brilliant news for a family who have been through so much and done so much to promote the lifesaving power of organ donation.
“Simon’s transplant was made possible through the generosity of a family who supported donation at a time of grief and I hope it will bring them comfort. I’m sure Simon’s story will inspire more families to say yes to organ donation, saving many more lives.”
Register as an organ donor at www.organdonation.nhs.uk
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