I’d actually been working on Beany update post – she’s 16 months old, I’ve neglected the blog even though there is so much to say and now everything is…different.
Four weeks ago, Beany got sick. Three weeks ago we were trying pediatric laxatives from the GP. Two weeks ago we were back at the GP. One week ago we were in Cardiff getting a Hickman line so she can have chemo. Today she’s already had that first dose.
Four Weeks Ago
It sounds like a long time, a whole month, but it feels like nothing. Like four days. We had been encouraging Beany to eat more solid foods, on the advice of the solicitor and when she started feeling unwell, it seemed like it was just constipation. We tried all the over the counter stuff, even when to A&E on the advice of 111 but, no, just constpation, give it time. We also thought it might due to her eating the spines of some board books. She’s been teething and chewing pretty much everything in sight. Her abdomen was pretty soild to touch and there was a lump.
Three Weeks Ago
There was still no movement. We spoke to the Gp who prescribed her some pediatric laxatives (Movical). It kinda worked. It was wasn’t great, but her stomach wasn’t as hard and she was in a better mood and the lump, the lump wasn’t as obvious when her stomach wasn’t full and hard. She’d need the Movical for a few months maybe, to resettle her bowels into a routine, so morning and night she had a dose and it kinda worked.
Two Weeks Ago
She woke up ill again, it was chucking it down, she’d had a rough weekend ’cause of the constipation, the lump was back and really obvious. After going home to change out of some wet clothes (mostly my wife and Snappy though) she started throwing up. My wife took her to the GP, the GP, thank eff, sent her straight to the hospital.
Beany had an ultrasound the next day and they found an abnormal lump on her liver. Just a lump. I didn’t even think about cancer, tumors, I was just like, okay a lump, what sort of lump could it be?
My hospital doesn’t really have the facilities to do the kind of tests on a little kid that she needed. It’s a great hospital, and not so much indicative of living in a rural area but more about being a 16-month-old and needing specialist tests and treatment – that would involve travel for anyone outside the major cities in the UK.
So she had to be sent to Cardiff, which meant waiting for a bed, then waiting for transport, then driving the 100 miles there and that was Wednesday.
By Friday my wife was telling me she had a tumour on her liver. That was bigger than her liver. Much bigger That was the lump, that was the cause of the constipation, that was what made her throw up. A tumor.
I put the phone down and nearly fainted. I had to call my sister to come and get my niece cause I couldn’t be faint, look after Snappy who had started throwing up (more from the stress than anything) and Poppy who was being so helpful anyway. She’s ten and either going to be an actress or work in healthcare like her mum.
One Week Ago
The diagnosis, whatever it was going to be (and it could only really be one of a handful of things) all meant she will need chemo and she had to have a picc line put in for the chemo and for other meds and blood tests. She had to go nil by mouth all Sunday night and most of Monday – 16 hours, which seemed cruel. I was in a hotel from Saturday to Monday, and spent all day in the hospital with them. In the end, she was bumped due to an emergency and had the line put in on Tuesday. She also had a biopsy on the tumor.
I was home by the time this happened but got to talk to the doctor over video with my wife to talk about diagnosis and treatment, and scribbling down all the long words and bits of information in a notebook so I wouldn’t forget it all.
Beany has a rare form of liver cancer that only the under 4s get. The average age of a kid with hepatoblastoma is one. Beany is 1 and four months old. We agreed to put her in a clinical trial but the randomly selected treatment is the treatment she would’ve received anyway. Chemo every two weeks for a bit, surgery, more chemo. Maybe a liver transplant as she has tumours in both lobes of her liver and it will make surgery a little difficult.
She had her first dose over the weekend. My in-laws drove me down on Saturday, my wife had lunch with Snappy and they took him back as we were told she can come home between chemo cycles.
The chemo involves the chemo, two days of fluids, anti-sickness meds for two days. She needs her nappy changing every 2 hours, and you have to change it while wearing gloves. The nurses and healthcare assistants were amazing and helped me changed the nappies overnight and let me sleep a bit.
We’re just waiting. The consultant has said they want to keep her here for anything 24 hours, due to the fact that she’s on oramorph (morphine) for the pain and regularly needing it and she’s so small. Plus the oramorph gave her constipation again and we had a rough morning dealing with that.
Hopefully, she will be able to come home this week. I’m terrified of the prospect of having her home, but also hate it here. Hate being away from her or being away from Snappy.
We have a justgiving page for donations – we don’t drive and Tabby can’t use public transport while having chemo. The hospital is almost 100 miles away from home. Even the hospital she would need to visit for infections is an hour away.
Please consider donating or sharing via the button below. Thanks.