Tuesday, 31 August 2010


Adam is scheduled for tumour surgery tomorrow. He will be going down first thing in the morning to PICU and we've been told that the operation could be over by lunchtime, or it could take all day.
Please spare a thought for our middle-sized boy tomorrow.

Tuesday, 17 August 2010

Stem Cells. What Stem Cells? ...

After the second stem cell harvest last Wednesday and Thursday we have collected a total of 4 million cells. It's not a completely disastrous outcome but neither is it what we'd hoped for. Having been told that the requirement for transplant is 2-3 million cells we have the absolute bare minimum. Therefore, as things stand, there is simply no room for manoeuvre. After surgery the plan is MIBG therapy with stem cell transplant and then high-dose chemotherapy with stem cell transplant. That will be all the cells used up. Any further treatment options that cause bone marrow depletion would be ruled out. More MIBG therapy, for example. We are going to inquire about collecting cells direct from bone marrow extraction, but it's something The Marsden haven't done for a long time and they seemed to suggest last week that there would be little point as the cells are most likely just not there. Still we'll ask the question.
The stem cell harvest itself was largely uneventful. Adam screamed the place down when it came to removing the vascath from his groin this time. Knowledge is a powerful thing - the previous experience of removing the dressing, stitches and line definitely had a negative effect on him. For some reason he'd imagined it worse than it really was (not that I am suggesting that it was in any way pleasant). In the end we adopted the brute force approach. I held his arms down, Alison held his legs and the nurse whipped the line out. I say whipped because it really was a two second job. Adam's response when we let go of him was "What, is it out already? That was quick."
Away from hospital business we've been trying to enjoy the summer holidays as much as possible. Last week I took Jake to watch the England friendly at Wembley. I'd never taken him to Wembley before and so it was nice to get to do something like that with him. Still, I couldn't help but wonder as we made the trip back home whether I would ever get the opportunity to do the same with Adam in years to come. As enjoyable as the evening had been it was this thought that dominated as I quietly cried a few tears into my pillow that night.
I also have to report on something a little bit crazy that we did whilst we were away at the end of July.... we bought a caravan on a holiday park. Completely on the spur of the moment whilst visiting a friend of Jake's. When I say on the spur of the moment I really mean it. Owning a caravan is not something that has ever been mentioned before, even in passing, in all the years we've been together. And yet in the space of little more than 24 hours we selected, sited and signed contracts on one! It just seemed like the perfect thing to do. Forget the cost - it's just more money on our mortgage and the success of the appeal has greatly reduced the chances that we'll have to finance treatment via that route. What it means is that we can get away as a family, down to the coast, take in some sea air whenever we have the chance. And we are able to set things up so that when we are there we have everything we need to replicate what we do for Adam at home. Last night Adam was sitting outside drinking a glass of milk and cooling down after a game of 'It'. I heard him having a conversation with Alison; 
"Do you like the caravan Mum?"
"Yes of course."
"I do. I love it."
That's more than good enough for me. I'm so pleased we've done it. We have absolutely no idea when we will next be able to go on a family holiday like we have in the past; it could be years. However, now we can steal days away when Adam's not in hospital. Having something positive to focus on, something for everybody in the family to feel good about, has given us all a boost, We've been there these past two weekends and hope to spend as much time there as possible before Adam goes in for tumour surgery at the end of August.
Adam and Alison are even starting to become quite well known on the children's ward at Chichester hospital, though a large part of that is down to the Nintendo that they supposedly left there and had the nurses hunting high and low for, only for it to reappear in the boot of our car the next day. I asked Adam whether Mum was embarrassed when she told the nurses we'd found it. "No" he said. "But I was."

Tuesday, 10 August 2010

Gollum, a triple rotten egg and a refund...

Adam has spent much of the time tearing around the ward since his arrival at hospital yesterday afternoon. There was a brief interlude today due to surgery to fit a vascath ready for stem cell harvest; he woke up from the general anesthetic around 1pm whilst I was visiting at lunchtime. However, by this evening he was back on his feet, albeit his gait is more a hunched over shuffle now he has a catheter inserted up through his groin area. I (affectionately) refer to him as Gollum from The Lord of the Rings and walk behind him mouthing ‘My Precious. My Precious’. Obviously most people that witness this think I am a little disturbed and need help, but I find it amusing.
Last night after becoming a triple rotten egg (an accolade Adam bestowed upon me after I was last running back from the playroom to his bed three times in a row) I was reminded of a year ago when Adam was an inpatient and did little else but lie motionless on his bed watching DVDs. Alison and I used to watch a little boy having running races with the nurses and, looking from him to Adam, surmised that he couldn’t possibly be under treatment and must be a relative of somebody else. Now, I don’t know whether that boy was in fact a patient, but there must be parents on the ward now thinking the same thing about Adam. Only this evening I was approached by a parent to whom Adam had been explaining that he was going to America (I wasn’t present at the time and how he got on to the subject I have no idea). This father couldn’t believe that we were contemplating going abroad and that there was no way that we could get the treatment at The Royal Marsden. His parting comment to me was that to look at Adam and see him running around he would never have thought there was anything wrong with him. And he’s right. It’s heart warming and heart wrenching at the same time.
Moving on to the more boring stuff, Adam’s first course of Plerixafor is given by injection into the stomach at midnight tonight and the first harvest is scheduled for tomorrow morning (it has to start within 10 hours of the drug being administered). Since my last post there have been further developments on the funding front. After the intervention of the local press, the PCT meeting was moved from the earliest available date (Wednesday) to Monday. Earlier today we heard that Adam’s treatment had been approved and as a result the hospital are now in the process of arranging a refund back to The 2Simple Trust. I think the fact that he never received the drug itself as a private patient probably makes the refund process simpler. So it all seems to have worked out in the end ... we just need to get gazillions of stem cells now.

'We wants it, we needs it. Must Have The Precious. They stole it from us. Sneaky Little Hobbitses.' 

Friday, 6 August 2010


Yesterday was yesterday, today's another day. Taking Adam in to have blood taken for pre-harvest serology and collecting his GCSF. Blood results are only valid for thirty days so the previous set cannot be re-used. Amusingly the purpose is to check for HIV... you can't donate stem cells (even back to yourself) if you are HIV-positive.
I see very little point in dwelling on the events of yesterday. My life is stressful enough as it is. The money has been transferred across and the treatment is going ahead as planned. Our efforts are best focused looking forward rather than back.
I would hope the process continues to some logical conclusion (including the PCT meeting on Wednesday) for the benefit of the next family that comes along in this situation. Adam isn't the first child for whom this drug has been requested (although PCT is a matter of home, rather than hospital, location). The next family may not be fortunate enough to have the charitable support that enables them to take matters into their own hands.

Thursday, 5 August 2010

I'm not making this up...

So here's the situation. The PCT have continued to prevaricate and have not made a decision on whether to approve the funding for Plerixafor, the drug requested to support Adam's stem cell harvest. Very magnanimously they have agreed to reconsider the request at a meeting next Wednesday, but even then there seems to be a more than even chance that they will reject it. In any event the harvest process is supposed to begin tomorrow and continue through to the end of next week. A decision on funding next Wednesday doesn't exactly fit with those timescales.
I could go into the politics of it all, the debate on who should pay for what, when and why. But frankly I DO NOT CARE. Have the debate in your own time, not when the clocking is ticking on my son's future. Decide amongst yourselves. Have a PCT party with fellow bureaucrats in neighbouring trusts. But don't drag your heels and scratch your arses whilst we are hanging on here waiting and wondering what's happening next week with Adam's treatment.
Actually I can tell you what is happening next week with Adam's treatment. The sum of Twenty Six Thousand Pounds from Adam's Appeal is going to be transferred into the private patient account at the Royal Marsden Hospital and we are going to go get ourselves some stem cells.
The PCT can go screw themselves.
I am not waiting around whilst they pass judgement on my child yet again. I'm so sorry he didn't respond to upfront therapy in a textbook fashion. Because let's face it that's what it boils down to. It feels like he's some kind of trouble kid that the authorities don't know what to do with.
It was one thing to face the prospect of immunotherapy abroad because the UK decided to implement a brand new trial rather than the proven US treatment (the main thing they did copy from the US was to exclude kids like Adam that take longer to respond). But I never thought we'd be funding Adam's treatment inside the UK.

This had better work now. We'd better collect a ton of stem cells. I'm demanding value for money.

I'm also incredibly pissed off right now. Though, I might add, not at The Royal Marsden itself. Their hands are tied. This is clearly the system and the PCT at fault. Unfortunately I don't have any specific individuals at which to point an accusatory finger (or two).

I'm also not making any of this up, for those of you innocent things out there who think this is unbelievable. It is unbelievable, but it's also true.

Tuesday, 3 August 2010

All change please, all change...

Okay so here's the thing. Adam pencilled in for stem cell collection next week and surgery requested for the following week. I am getting a little impatient that we haven't yet had approval for Plerixafor and I'm also quite conscious of how long Adam will have been without treatment going into MIBG therapy. 
And then in comes the curveball.
Phone call from St George's to say the surgeon is going on holiday and so Adam is booked in for surgery w/c 30th August. Can we please confirm the date?
Two full weeks later than we expected... meaning on this schedule he will be more than 2 months without any sort of chemotherapy.
They are going to discuss options (oral/holding chemotherapy) and we should have an update by the end of the week. It's not as simple as just whacking him with another full dose of chemo, as that would inevitably mean a complete reschedule of surgery. In order to minimize the risk of infection and complications his blood counts need to be sufficiently good before he can be operated upon.

Monday, 2 August 2010

Back to business...

Its been a while since I posted so I figured it was about time I gave everybody an update on what we've been up to and where we're at.

We managed to get away for a few days and enjoy some quality time together. It was lovely to see the kids out playing and enjoying themselves. I honestly don't think Adam's energy levels have ever been higher.

Of course things wouldn't be right without a little bit of hassle thrown in and so it proved. 

We were planning on going down to the coast on Friday evening and staying until Wednesday, as we had to be back Thursday for Adam's CT scan. However, having been referred to University College Hospital in London for Adam's MIBG therapy we received a letter informing us that an appointment had been made for us to see the consultant there on Tuesday afternoon! The Royal Marsden are currently having a new children and adolescent centre being built that is due to open next year. At the beginning of this month the building works break through into the existing unit and will take out of commission the 3-bed bay adjoining the special lead-lined MIBG room. The expectation is that it will almost certainly be impacted in some way; power, water, drainage, etc. as to render it unusable. For that reason we've been referred to UCH. Alison called the hospital and explained our plans to grab some precious time away whilst we could and they agreed to move the appointment to 9am on the Thursday which, whilst not exactly convenient, was the only other time available before Dr Gaze himself was away. Thinking that we could spend the day in London after the meeting we then re-arranged the CT scan to last Friday morning. Hopefully you're all with me so far!

The results of the CT scan came back pretty much as expected. The mass was, if anything, very slightly smaller than on the last set of images and showed signs of further calcification. The scans will be sent over to the surgeon at St George's who will be performing the resection of Adam's tumour.

On Friday afternoon I had a meeting in London with the trustees of The 2Simple Trust. With the charity undergoing structural changes as it becomes the Neuroblastoma Children's Cancer Alliance I was keen to go along and participate. Of course the meeting went on longer than anticipated and consequently I wasn't overly popular when I arrived home just before 8pm. By the time we arrived at our destination it was almost midnight, but Adam didn't seem to mind. On the contrary he was thrilled with the fact that he was up so late for the second night running, having spent the previous evening watching JLS at Epsom Downs racecourse. 'It's nearly midnight again?' he asked, and when I nodded he clenched his fist and exclaimed 'Yes!'.

We had 4 full days away and it was just what we'd hoped it would be. For a while I almost forgot about the 'C' word. Seriously.

On Wednesday after we'd been out for the day it was time to get the house cleaned up, pack the car and head for home. 'Leave things as you find them' I was always taught, so after cleaning and tidying each room we declared it off limits until eventually we were confined to the kitchen. With just a few items to wash-up, the kitchen floor to sweep and mop, and half a dozen items left to go in the car, Jessica kicked the football into the neighbours garden. Adam put his hands on to the brick wall so he could lift himself up to see... and was stung on the finger by a wasp. Oh how he screamed. 

The site of the sting was obvious and within a couple of minutes his finger had started to swell. When it then spread further to his hand we called the hospital to ask them what we should do and they advised us to have it looked at. Another 15 minutes and we'd have been packed and locked up, but instead Alison left me to clean the kitchen (one for the conspiracy theorists) whilst she drove Adam to St Richard's Hospital in Chichester. Fortunately by the time they arrived the swelling had begun to recede of it's accord. After a quick examination, and a slightly longer delay whilst they checked whether there were any other potential problems relating to wasp stings and cancer patients, the intrepid hospital explorers returned once more. And just as we had on our outbound journey the Friday before, we set off for home two hours later than we had originally intended.

Despite the resultant late night Adam was quite chirpy the following morning when I woke him just before 7 o'clock so that he and Alison could get the train up into London for the 9am appointment at UCH. Alison met and talked to Dr Gaze, and then visited the rooms where the MIBG therapy is carried out.  At the moment there are two different types of therapy that Adam might have. Which will depend largely, I think, on how many stem cells we end up with after the next harvest. Option one is less potent and will involve Adam being isolated for a week to 10 days. Option two is a more aggressive treatment in which the MIBG therapy is administered twice alongside chemotherapy (topotecan). This involves a week in isolation at UCH, a week at home, another week in isolation at UCH, another week at home. The complication is that when Adam is 'home' he cannot be in the same house as Jake and Jessica because of the level of radioactivity in his body. There are other restrictions too - anything Adam takes into hospital won't be coming home with him. We've already been advised to take old clothes and nothing of value or importance. Need to work out a strategy for soft-hat and sleeping blanket...

On the stem cell front we were expecting to go in this week to try for another harvest. Stupid us. Coordination and scheduling considerations, and as yet no approval (funding) for Plerixafor, means we are pencilled in for next week instead, with collection 11th - 13th. I am determined Adam will have this drug, even if we have to take him outside of the NHS to get it. With surgery to follow the time that Adam will be without active treatment for his metastatic disease is praying on my mind. I certainly don't want it getting any longer.

It's back to business.