Adam's Appeal

Feeling better now he’s thrown up …

Wed, 23 May 2012 19:40:57 +0100

Feeling better now he’s thrown up …

First day of chemo. Adam not happy, but then there is nothing to...

Tue, 22 May 2012 14:09:06 +0100

First day of chemo. Adam not happy, but then there is nothing to be happy about.

Recovering after his central line insertion …

Thu, 17 May 2012 13:26:22 +0100

Recovering after his central line insertion …

Bye Adam, safe journey …

Mon, 07 May 2012 09:15:59 +0100

Bye Adam, safe journey …

What time’s my flight? (Taken with instagram)

Sat, 05 May 2012 16:16:32 +0100

What time’s my flight? (Taken with instagram)

At cricket … ! (Taken with instagram)

Fri, 04 May 2012 18:21:15 +0100

At cricket … ! (Taken with instagram)

I think Adam has finally lost the plot … (Taken with...

Tue, 01 May 2012 08:52:10 +0100

I think Adam has finally lost the plot … (Taken with instagram)

Taken with instagram

Mon, 30 Apr 2012 15:51:33 +0100

Taken with instagram

Ready to start training …

Mon, 12 Mar 2012 20:07:00 +0000

Ready to start training …

Cannula supported by Build-a-bear …

Sun, 11 Mar 2012 18:59:18 +0000

Cannula supported by Build-a-bear …

Domestic bliss … hospital style

Thu, 08 Mar 2012 18:40:07 +0000

Domestic bliss … hospital style

Still in the hospital. Central line out Fri pm hopefully.

Wed, 07 Mar 2012 19:56:39 +0000

Still in the hospital. Central line out Fri pm hopefully.

Back in hospital, back on the Wii …

Tue, 06 Mar 2012 17:53:52 +0000

Back in hospital, back on the Wii …

Brothers …

Fri, 02 Mar 2012 19:42:00 +0000

Brothers …

Mr Gorgeous ….

Fri, 02 Mar 2012 17:41:09 +0000

Mr Gorgeous ….

Adam with my medal from the Tunbridge Wells Half Marathon this...

Sun, 26 Feb 2012 16:09:00 +0000

Adam with my medal from the Tunbridge Wells Half Marathon this morning. http://www.run4robyn.org

And at the park …

Sat, 25 Feb 2012 16:10:17 +0000

And at the park …

Off to the park …

Sat, 25 Feb 2012 15:59:03 +0000

Off to the park …

Playing playstation in pajamas …

Tue, 14 Feb 2012 11:53:29 +0000

Playing playstation in pajamas …

So predictable, so avoidable, so sad ...

Wed, 18 Jan 2012 15:30:57 +0000

I really don’t like to do our health service down, and even more than that I like to believe the Royal Marsden is as good as any hospital when it comes to patient care. However, there are times when even I have to step outside that little dream world and face reality …

Now believe it or not, I don’t actually like to cause trouble for anyone. Really, I don’t. Quite the opposite I spend quite a lot of time thinking about how we can make things as simple and straightforward as possible. For us, for the hospital, and most of all for Adam.

On 5th January when we got back from Germany I emailed the Marsden to say we needed an MIBG scan, the radiographers report and an image CD to take back with us on 23rd Jan. So that meant it all needed to be done by the end of Friday 20th Jan. A fortnight’s notice. That’s not unreasonable, is it? It’s doable, yes? Well I thought so at least.

When we got a letter on 12th Jan asking for a list of Adam’s current medications so that they “could schedule a date for his scan” I was a little concerned. I emailed them straight away to highlight the timescales. I was told those responsible were aware. We sent the form back and I was told it was received the following day.

On Monday the PCT agreed to fund Adam’s treatment and the fact we’d still not heard from the Marsden got overlooked.

Yesterday I called the Marsden to ask them if Adam’s scan had been scheduled. No, I was told, they were waiting for the nurse clinician to sign off the list of medications. I reminded them of the urgency, and that we were leaving it pretty late. They took my number and told me a colleague, who was responsible for all the bookings, would call me back.

Today I called the Marsden to ask if Adam’s scan had been scheduled as nobody called me back. No, I was told, they were waiting for the nurse clinician to sign off the list of medications. The nurse would have to call me. Why does the nurse need to call me? I asked. We’ve done a dozen or more of these scans and the nurse has never called us before? They replied by telling me they were going to end the call … no please don’t do that I said. (Why they said that I have no idea, it’s not like I was being abusive, or even raising more voice. I was perfectly calm and collected.) I explained the situation, the urgency, and they took my number and said they’d get the nurse to call me back. They’d been chasing her up for weeks now, but she wasn’t signing anything off and they didn’t know why.

The nurse does call, this is the first she’s seen of Adam’s form she says. There is no date booked in for his injection or scan. And they have to order the MIBG dye in advance and it takes a few days. She’ll see if there’s anything they can do.

She calls back a bit later, around noon, and it turns out somebody didn’t turn up for their scan yesterday, so there’s MIBG that expires at 1pm. So can we bring Adam straight to the Marsden and we’ll go from there? Hurry, hurry, hurry - time is of the essence all of a sudden.

But, of course, Adam isn’t even dressed. He’s at home, off school with a cough and cold. And he hasn’t had any potassium iodide to block his thyroid. So no, we can’t bring him there straight away and have him injected by 1pm. That would be crazy, you’ve had a fortnight to sort this out and that’s the only thing you can come up with.

Which means we won’t be having the scan before we go to Germany on Saturday.

In the words of a particular Catherine Tate character: “What a load of old shite.”

But it’s not all bad … if we want to the hospital in Germany have said they can do the scan at a day’s notice. And what’s more NHS Surrey will still be footing the bill for it!