A friend of ours works in fundraising for Cancer Research. She’s asked if we can write something about Casper for a team meeting to help motivate her team to raise money. I’ve written this piece for that purpose.
Casper was born one Monday afternoon in February, in a giant paddling pool in our kitchen. He weighed 10lbs 2, and was born without any pain relief, not even a paracetemol, just how we hoped – as little medical intervention as possible.
There have been a LOT of medical interventions since.
In July Casper was diagnosed with Langerhan’s Cell Histiocytosis, or LCH. The initial suggestion that he might have this condition came when we were admitted to hospital early one Saturday morning after he’d been vomiting all night. The consultant paediatrician was unconcerned with the vomiting though, and much more interested in the rash that we’d been told, by several doctors, was probably just eczema. It wasn’t.
The consultant was careful; LCH was an autoimmune disease, and highly treatable, though admittedly with chemo. We were concerned, but alarm bells weren’t quite ringing. Then we were moved to the paediatric ward, knowing we would spend at least a few days there. We were met by a social worker from CLIC Sargent. We knew what that meant immediately. Cancer.
That initial admission to the Royal Devon & Exeter Hospital turned into a two-week stay at Bristol Royal Children’s Hospital, and somewhere in the region of 50 nights in hospital over the four months since. Nearly 30 blood transfusions. Two six-week bouts of chemotherapy, steroids, and an array of anti-sickness drugs. Skin and bone marrow biopsies, ultrasounds, x-rays, endoscopies, lines inserted into his chest, nasal-gastro tubes and pump feeds. 48 hours in hospital and precautionary antibiotics every time his temperature hits 38 degrees, just in case it’s sepsis (or even something less sinister). Baby’s temperatures hit 38 degrees a lot. He cut his first teeth in hospital. He first sat unaided on a hospital bed.
LCH is a complex and weird disease, most akin to blood cancers like leukaemia. There is much debate over whether it technically is or isn’t cancer, but when your child has it, that’s semantics. Because it affects the immune system, it can manifest anywhere in the body, in one location or in multiple locations. Just in the skin or just in the bone, and six weeks of chemo etcetera normally clears it up easily. But if it’s in a risk organ, it can be very tricky. Dangerous, even.
Casper has LCH in his skin, his bone, and his gut. He has it in complicated and unusual ways. He doesn’t follow the textbook, not that there really is one because only about 50 people a year in the UK are diagnosed with LCH. Consequently there is little research, and what there is, is part funded by CRUK. Despite initial tests coming back negative, we have a suspicion that there is bone marrow and/or liver involvement, simply because of how may blood products he’s needed. A couple of weeks ago it became clear that the initial treatment plan wasn’t going to be enough to fix him. His skin and bone are clearing well, but his gut involvement, and any other involvement, needs something more.
After much discussion and negotiation, Casper has been approved for an experimental gene therapy. He is too young to be part of a trial, so the drug company are giving the treatment on a compassionate basis. He is essentially a one-baby research project. Because of a mutation to his b-raf gene, he can be given a b-raf inhibitor, which should theoretically ‘switch off’ the disease, for as long as he takes the inhibitor. So not a cure. Curing will probably involve more chemo, in the future, when he is stronger and has a more developed immune system. Research will, we hope, help to fix him.
Casper was nine months old on bonfire night. He is well known in the children’s ward, partly because he spends several nights a week there, but mainly because, despite everything, he is outrageously, ludicrously happy. He smiles almost constantly, even when he’s poorly. And luckily that’s not as often as you’d think – most of the time he does not present as a poorly baby.
But there have been moments – thankfully few – where we have held him, inconsolable, swollen, crying, vomiting, in our arms and feared the absolute worst. Part of you fears the worst constantly, the 5% of your brain that is always switched to the most anxious, crisis-ready mode.
Cancer is horrific. Not just the disease itself, but the ripples of chaos and disruption it sends across the rest of your life, your family, your entire world. Without research, cancer destroys lives.
Sick Mouthy 