When we first met Lauren in 2018, Elijah was three. He liked dens, jigsaws and PAW Patrol. He was also 1 of the 95 children to be diagnosed with Neuroblastoma each year in the UK and 1 in 10 million to suffer from OMS (‘Dancing Eye Syndrome’). After five rounds of chemotherapy and harrowing surgical experiences, Lauren and Jamaine hoped that their new baby’s umbilical cord stem cells could help protect their son.
Part One: Summer 2018
Lauren isn’t having the easiest pregnancy. For those of us with children of our own, nausea and back pains might be par for the course, but Lauren is also taking care of an energetic 3-year-old with a rare and complex illness.
On the two-year anniversary of her son’s diagnosis, this incredible woman talked to us candidly about family, cancer and why she changed her mind about cord blood banking.
When Elijah learned to walk, at about 13 months, he never really got strong. He looked nervous and shaky, but as first-time parents, Lauren and Jamaine naturally assumed this was part of the process and initially dismissed his difficulties.
Then there was the vomiting. Elijah could be sick up to 7 or 8 times a day. “But he wasn’t distressed,” says Elijah’s mum, Lauren “and he made up for it by eating ravenously at other times.” Elijah’s GP was content: Elijah was otherwise healthy and vomiting is relatively common in very young children, so this became the norm. Time and again Lauren was assured that it was “just a bug” or that her son had constipation. Reflux medicines and laxatives were prescribed, and seemed to help, confirming the GP’s diagnosis in Lauren’s mind. So wherever Elijah went, his sick bags went with him, “on the bus, at nursery, and at the park,” Lauren says, “he would vomit quite happily into a bag and then have something to eat!”
As the weeks went by Lauren, Jamaine and Elijah’s nursery teachers became increasingly concerned. Elijah sometimes looked unusually unsteady on his feet and whereas other children got over their wobbles relatively quickly, Elijah sometimes seemed to be getting weaker and less stable.
Lauren decided to take her son to A&E and request a second opinion. The hospital was busy and Elijah, a cheerful and brave soul, didn’t seem particularly unwell. The doctors understandably agreed with the GP’s diagnosis of chronic constipation and disregarded Elijah’s instability as he’d just learnt to walk. Later, one of these doctors was to call Lauren to apologise for his misdiagnosis of Gastroenteritis.
Lauren says, “When Elijah was 18 Months old, his nursery called to say they couldn’t get Elijah to stand and he seemed quite unwell. I collected him and took him straight to A&E, and by chance, it happened to be quiet for the first time, and someone actually looked at the history of trips back and forth and agreed something wasn’t right.”
Elijah was asked to fast all that day and was put on an acute MRI list, but as a Pediatric Anaesthetist was required to put Elijah to sleep, he was bumped down the list as they more urgent cases appeared. “It wasn’t until he had fasted for 14 hours,” Lauren says, “that we were told his MRI had been cancelled, and it wouldn’t be until the following day, and he would have to fast again as they couldn’t confirm a time. At this point, we had spent nearly 24 hours in an isolation room to restrict infection, as they didn’t know the reason for Elijah’s illness.”
The following afternoon Elijah was taken for his MRI. Specialists scanned Elijah’s head but after an hour and a half had found still nothing. They then decided to scan the toddler’s whole body.
For so many months, Lauren and Jamaine had waited for an answer that would explain their son’s symptoms. Now, at last, it came: The doctors had found a tumour on Elijah’s adrenal gland the size of a Ping-Pong ball.
Elijah was also diagnosed with Opsoclonus-myoclonus syndrome (OMS), also known as dancing eye syndrome (DES), a rare neurological condition that was responsible for many of Elijah’s symptoms and was to have considerable implications for his treatment.
Lauren describes the hours and days that followed as a blur: “I think I was hysterical. We went to the oncology ward and I saw children there with no hair. I just kept crying. The mums I met on the ward said I’d get used to it – but I thought, never.”
Chemotherapy and surgery
Elijah initially had two rounds of chemotherapy, which shrunk his tumour a little, but not enough for surgery and he needed to undergo three more rounds. Things were complicated by the position of Elijah’s tumour: “The tumour had wrapped itself around major blood vessels and had calcified in parts,” says Lauren, “making it really difficult to remove without damaging other organs or causing internal bleeding.”
“Chemotherapy was done over 3 consecutive days and lasted 6-7 hours each day, every 3 weeks. Then there were hearing tests, kidney tests. He needed blood transfusions and platelet transfusions. He was always covered in bruises. The inside of his mouth would bleed, and was covered in blisters due to Mucositis, he was often kept in isolation at the hospital due to infections as the chemotherapy would make him Neutropenic. We started to believe his hair wouldn’t fall out as it was still thick and curly 2 weeks after his first round of chemotherapy, and then one morning it was all in his cot, and all over his dummy and getting in his mouth. More and more fell out each day and we eventually made the decision to have his head shaved.”
“Elijah’s surgery was a horrific 9-10 hours. Nothing could have prepared us for it. The tumour was harder than the doctors thought because it had calcified. They managed to take 95% out but had to leave 1.5mm on his arteries and spine.” Elijah’s OMS caused his body to attack both a tumour and his brain. “That was what was causing the symptoms – the shakes, the vomiting. In a way, the OMS saved his life.” But it also meant that Elijah was resilient to painkillers. “The OMS makes him immune to morphine. His brain puts up barriers to it. So all through his surgery he was getting no pain relief. It took a second nurse to see what was going on.”
“He’s incredible,” says Lauren, speaking two years after her son’s first diagnosis, “he’s just so resilient.” The extent of Elijah’s strength is difficult to comprehend: unknown to the family and doctors at the time, Elijah’s spleen was damaged during his first complicated operation. After suffering from back pain for ten months, Elijah would go on to endure 10-hour surgery to save his spleen and separate his organs in October 2017.
Living with cancer
3 days after his first surgery was Elijah’s 2nd birthday. He wasn’t walking or talking at this stage and was being tube fed, back Lauren and Jamaine were determined to celebrate with Elijah and brought him his favourite characters from Frozen and a cake. “We lifted his head for him to see,” says Lauren, “but he was totally out of it.”
Asked how she copes, Lauren replies simply: “I’ve never had a child who is not ill.” Her love and admiration for her son are palpable: “He’s just so brave.” She says, “Elijah is now in cancer remission and now has 3 monthly scans and urine tests to check there aren’t any changes in a tumour. However, he has ongoing treatment for his OMS, after 9 months of steroids, and one year on Immunotherapy, his treatment was escalated to a Chemotherapy drug called Rituximab. He had6-hour infusions every week for 4 weeks. The drug kills all of Elijah’s B Cells, suppressing his Immune system and it can take anywhere from 6 months to 18 months to build back up again. We try an avoid anywhere too busy, and do as many outdoor activities as possible to prevent infection.”
“We can’t give Elijah Calpol because it can mask an infection. But he loves hospitals! He wants to know what we’re going in for; he remembers all the playrooms and staff. He’s even got his own doctors kit, so he can test his blood pressure! He says to us: ‘I’m going to do your obs.’ [medical observation].”
The greatest every-day challenges are giving Elijah his medicines and keeping him entertained. “He has to finish his medicines,” says Lauren, “But he hates them. I try to hide them in his food!” And whilst he can sometimes play at nursery and loves doing things with other children, Elijah’s medication leaves him vulnerable to infection and he often has to spend long periods of time at home and away from crowds.
Cord blood stem cells
Having spent so much time on pediatric and oncology wards, Lauren knows lots of people who have had stem cell transplants but was initially put off storing her own baby’s stem cells by annual fees and complex processes. “It seemed like endless money” she recalls, “and it wasn’t made clear.” After her Mum contacted Biovault Family, things changed: “conversations with them feel like you’ve known them for ages,” she says, “they’re really helpful. It’s not like someone hounding you, it’s nice to talk to them.”
Lauren’s cord blood and tissue will be collected just after she gives birth and processed and cryogenically stored by stem cell scientists in our UK-based laboratory. Cord blood stem cells are used to treat all forms of blood cancer as well as conditions affecting the blood and immune systems such as neuroblastoma, diabetes, sickle cell and cerebral palsy.