Stop the ride I want to get off...

Thursday, April 28, 2005

welcome to wigglies world...

Ok, so I have no idea what part of the story this is, but it needs telling. So far we’ve joined the children’s oncology ward and we know that Daughter aka Amy has cancer. It’s on her kidney, the left one, and the lump is huge. They’ve also spotted something on the chest X-ray but aren’t sure. So now the experts at the Children’s hospital start to assess the situation.

On the Monday not a lot happened, I think this was the day she had a CT scan. I remember something about trying to get her to drink a litre of heavy water. This is a little girl who rarely drank more than an egg cupful of anything a day. Daddy took her to the scan, she managed most of the water, the rest of the day was taken up with meeting the school teachers and learning the ropes.

Another trial over those first few days was blood pressure medicine, nightmare as the only stuff they could use at that point was this melting tab that had to be held under the tongue for thirty seconds and tasted vile. All the nurses knew it tasted bad they had all tasted it. That was something we really appreciated, Nurses and Pharmacists who had tried medicines. In those first few days we also learnt that children needed to know the truth, because if you didn’t explain things to them they would overhear and imagine things much, much worse.

Amy’s consultant was a really nice man, who quickly cottoned on that hubby and I were bright people who understood science. After we cleared that up, talks with him went much better, he talked to us at a level we appreciated. We needed details, we wanted to know how things worked, how things had gone wrong, and we needed the kind of information he was feeding to his first and second year students. He turned out to be one of the leading researchers in Amy’s tumour.

That evening we got to experience the bad news room, shudder, the CT scan showed that she had a tumour growing on her left kidney and it was roughly the size of a small soccer ball. This is inside the stomach of a six year old. Worse still, she had metastases on her lungs. In other words the cancer had already begun to spread around her body. The enemy also gained a name… Wilm’s Tumour, a rare childhood cancer, only 75 children a year are diagnosed with it in the UK each year. To read more go here, the Cancerbacup site...

Wilm's Tumour...

This was all they told us, I suppose in a crisis like this you need your information in small doses. What they then told us was that she would have to have chemotherapy and that the best way to administer it for children was through a central line, or wiggly as it is known in the Children’s Hospital.

Here… they say it so much better at cancerbacup.

Central Line...

We were given the choice of this or a port, you can look that up if you want, we went for the wiggly because the consultant thought it a better choice. No needle to shove in it every time it needed accessing. So the plan was Tuesday, take a biopsy of the lump and fit Amy with a central line. Sounds simple, now explain this to a six year old.

Tuesday morning came and Amy was on nil by mouth. Explain to me please who thought it would be a good idea to put clip art of food items on the nil by mouth sign hanging over the bed?? Amy at first thought this was funny, later on she got cross with it. She went up to theatre just after lunch, and wasn’t gone too long. She came back throwing up, with a large dressing taped to her chest. The wiggly was in, and the next hurdle would be to get her to let us use it.

This was before I got brave, so Paul had taken her up to theatre and collected her. She had screamed the place down, and had to be held down for them to administer anaesthetic, Daddy looked drained. I don’t think we tried to use the wiggly till the next day. I may be wrong, but I’m fairly sure it happened on the night I first stayed in. The night of the biopsy was the night they told us that her prospects weren’t good. She had Stage IV Wilm’s and she was old to have it. If I figure out how to be clever I’ll give the links for the other parts of this story.

So Wednesday rolls round, and I have decided to stay the night. Amy’s nurse comes to talk to me, we need to use the wiggly. We both look a bit pale, but it has to be done, she warns me most kids panic and fight it until it’s being used then they realise they are fine. All day Amy had been playing with the special dolly with a wiggly and talking with the play therapist. Nice idea, but when it finally comes down to it, you look down at your chest and imagine two plastic tubes coming out of a whole in your chest. How would you feel about anyone messing with it?

I am a sneaky mum who also does not think that pussy footing around something helps the kid. So I was sat behind her giving her a cuddle. In walks nurse and student with tray and Amy backs up into my arms. It’s ok Amy we’re going to check that wiggly works, have you named them yet? Her nurse explained that she was putting the tray over here far away and that first we’d just unwrap the wigglies and see how they were. So carefully she unveiled this alien thing, and I had to bite my lip and not cry myself, it is the weirdest thing to see. Amy was shaking, and her voice pitch had gone up a few octaves, it was obvious she was petrified. We named the wigglies, Jake and Fizz, characters from her favourite TV show at the time.

The tray was moved onto the bed, now bear in mind a central line must be kept absolutely sterile at all times. We are all on the bed, the nurse, me and Amy. Amy is not happy and is beginning to squirm. The nurse starts to negotiate, Amy says no, the nurse keeps trying…. What seemed like half an hour later they are still trying, Amy is getting more and more distraught and I know there is no way she is ever going to say yes now, like me she has a very stubborn streak. I know this is not going to hurt her, I know all this anticipation is a more scary than using the wiggly so I take action.

I look the nurse in the eye, I ask, if it gets tugged a little will it come out? No, they are quite secure. I nod, are you ready to do this? Yep, as soon as Amy says so, Amy are you going to let her see if wiggly works… you can guess Amy’s answer. I’m sorry Amy but some things we have to do, as I talk I am wrapping my arms around her, not tight not yet, I catch the nurses eye and as I swing my legs over Amy’s legs and tighten my grip I say NOW. Bless her, the nurse blinked and then went for it, all the time Amy yelling at us. Until the syringe was attached and some blood appeared and she stopped. It doesn’t hurt she said amazed. I loosened my grip, we did try to tell you, haven’t we promised we won’t lie to you. Amy nods, watching fascinated now. Asking questions about what the nurse is doing, when the first tube is sorted she suggests they should make sure that one works. We’re all grinning by now and the procedure is quickly over. Then the student nurse settles down to chat with Amy as the nurse and I go for a walk, me claiming to need the toilet. When we got into the corridor out of earshot the nurse turns to me and says Wow, you really did that, I wasn’t expecting that. I pointed out I knew Amy well enough to know we weren’t doing her any favours trying to be nice. She agreed with me and we both held out hands, we were both shaking like leaves.

Whilst I love the idea that kids should have some say in their treatment, sometimes they are not helped by medical staff who keep waiting for the kid to calm down to do something. Sometimes you have to be cruel to be kind. We learnt to love that wiggly, oh it caused some problems, but it saved having to stick a needle in every time anyone wanted blood.

Thursday was a better day, that evening we got the biopsy results, common Wilm’s histology; treatment protocol unclipped from a file and handed over. Chemo to shrink the lump down, surgery to remove it, and then more chemo to mop up any free cells. Finally radiotherapy to the lungs and abdomen if any sign of spread is shown during surgery. All this would take about nine months, first chemo that evening.

Tell you about that next time…



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