No One Spotted My Toddlers Cancer

No One Spotted My Toddlers Cancer

In the middle of the pandemic, no one ever saw my baby.

It has been three years since Tabby was first diagnosed with cancer.

As if my life wasn’t hard enough, and we didn’t have enough struggles as skint, disabled, queer parents in the middle of a pandemic, we were thrown into a new kind of hell.

I think about it a lot, still, 3 years later. Not just the cancer, but the entire 16 months of my child’s life that had led up to that point and I don’t think I’m ever going to get over the feeling that we were failed so very spectacularly.  And I get that the pandemic and lockdown, made things very difficult, but we were so often crying for help – literally – and getting very little in return.

I’ll never forget my wife being told to keep a sleep journal for a baby that barely slept. I’ll never forget being told that we should all go on walks together after I come home from work, as if we weren’t in the middle of a pandemic or were lacking in energy from working all day (me at the office, my wife at home) and barely sleeping.

When people ask me what the signs were, it’s obvious now, looking back. She was a miserable baby, she barely slept, she was behind on her milestones (all of them except walking). It’s obvious that these were all signs that she can cancer from birth or infancy. She couldn’t breastfeed, she didn’t nap, she barely ate any solid food even at 15 months old and she didn’t speak much. I spent the firt month sleeping in an armchair with her in a sling. The next three months sleeping on a futon on the floor so my wife could co-sleep with her. Then I spent the next six months sleeping with her in the crook of my arm. I’m not an advocate of co-sleeping. It’s not safe. But we were desperate and we needed sleep to function.

Shortly before she was diagnosed

No one saw Tabby from the time she was discharged by the midwifes, to the time she was 15 months old and had a visit from the health visitor.

We had an appointment over Whatsapp with a breastfeeding consultant, who was supposed to help my wife breastfeed Tabby over a phone screen, despite the fact that it wasn’t anything to do with how my wife breastfed but Tabby’s inability to latch on. We gave up, tried pumping, but the stress meant my wife wasn’t making enough milk and, in the end, we went with formula. We had to. Tabby was miserable and hungry.

We gave up on breastfeeding.

We spoke to a sleep consultant over the phone a couple of times when we struggled to get Tabby to both nap and sleep at night. And I don’t mean, sleep through the night, I mean sleep at all. She would take 3 hours to settle her for ten-minute nap. She wouldn’t sleep more than an hour or two at a time. We had a four-year-old starting school – mostly online – and she was the only one who got any sleep. The sleep consultant suggested a sleep journal. My wife tried it for a week. It was mostly empty because she barely slept. The sleep consultant suggested everything we had already tried, we’d already done this before, we kind know how babies work, and then she suggested the sleep journal again as if we hadn’t already tried it. My wife asked her what we’re supposed to be journaling if she never sleeps.

We gave up, figured it out for ourselves.

My wife spoke to the post-natal mental health team due to the stress of a very miserable baby. They were not helpful, they suggest medication, spoke to my wife about routine and sleep and never really listened.

We gave up and just tried to struggle through it.

We spoke to the health visitor on the phone. She suggested we go on walks together as a family after work. Or that when I come home from work, I take the kids for a walk and give my wife a break. Which was fine, but it was winter, in Wales, in the middle of a pandemic. We could hardly go to the park for a jolly, and really, the half an hour I could’ve taken them out for didn’t really make up for the lack of sleep. Nor did it improve anyone’s mood during the rest of the day. Tabby was still miserable all day, so was my wife, we were both exhausted.

In all that time, no one saw her. No one physically saw my child until it was almost too late. It was definitely too late to save her liver by that time.

At 15 months, our health visitor actually came over to see Tabby. She was behind on all her milestones. I remember her eating literally three or four grains of rice at a time, less than an teaspoon of food at others. She said a few words. She was walking, but had walked really early. She was generally an unhappy little thing. The smallest things would make her cry, she would cry and scream randomly, so few things made her happy. Made her laugh.

We weren’t worried about the milestones, my eldest Flower had been ahead in some and behind in others. Hell, my nephew was a really quiet kid at first and then didn’t shut up for a decade. Our health visitor did refer us to Ear, Nose and Throat as we were worried about her snoring (she snored so loud!).

Even that visit did not pick up that something was very fundamentally wrong.

In normal times, the breastfeeding, sleeping, eating, mood would’ve had me at the GP, with the health visitor, in a clinic somewhere. But no one was seeing anyone in person. No one ever looked at my kid and thought to do any further investigation.

Even in the month lead up to diagnosis she didn’t actually see a doctor for the constipation that she was suffering with. The doctor prescribed her laxatives on the phone. And then told us the stick with it for another week when we called back to say it wasn’t working.

A doctor didn’t actually see her until the tumour on her liver was so big it was making her vomit, pressing against her blood vessels compromising her heart and in which a very nice locum GP felt her stomach and sent her straight to the hospital.

What followed was 8 months of seeing more doctors and nurses than most people have seen in their lives.

The reality is that Tabby had cancer a long time. That she had this one big tumour growing on her liver for months and months. That the little ones in her liver were increasing in number to the point where her liver could not be saved.

But I’m always wondering now if it had to be this way. If we had to suffer for so long. If she had to lose her liver and have a transplant and be resigned to a life of anti-rejection meds and medical anxiety (more mine right now). Her life span has been shortened. She is at risk from all the things kids routinely get (chicken pox for example).  She will always need blood tests, x-rays, m.r.i’s, ultrasounds, consultant appointments at a hospital 99 miles away, biopsies, medication. Hell, I had to buy special travel insurance for our trip to the states.

How much of that eight months of hell could’ve been avoided? What if she didn’t have tumours in every single part of her liver? If they could’ve done a resection? We got lucky, people think we were really lucky and yeah, compared to other parents we met on the cancer ward, yeah we were lucky. But I think people get hung up on the ‘what if she had died?’ and I’m hung up on the ‘what if she hadn’t had to go through this in the first place?’

Some facts:

Hepatoblastoma is liver cancer.

Hepatoblastoma affects children under 5 and about 8 to 10 children a year in the UK are diagnosed with Hepatoblastoma.

The survival rate for hepatoblastoma is 80-90%.

1,900 children are diagnosed with cancer in the UK every year.

Consider supporting your local childhood cancer charity – ours is the Latch Wales – they were a godsend. Also, those pennies you put into the boxes at McDonalds do actually help. We stayed at two Ronald McDonald houses, several times, and really needed it. Plus, they always had extra food in stock, goodies, and a place to just chill out. We even had a family dinner one night.

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