Saturday, 29 January 2011

And the latest results are in ...

We met with Adam's consultant on Friday afternoon to discuss his high-dose treatment starting next week, and also get the results of his latest MIBG scans. No change. Same disease profile. Stable. Which came as no surprise to me at all. The clear indication is that the MIBG therapy that Adam underwent in October and again in January has done nothing to move us any further forward. We cannot say so conclusively yet as it's still only three weeks since the administration of the 2nd therapeutic dose of radiation, but it's the most likely outcome.

And so it continues. And you get closer to the point where you believe nothing is going to shift it. We haven't given up by any means, but the longer time goes on the more your mind starts to think about the possibility that this is something we might have to live with long term. Is that such a bad outcome? Compared to the majority of children with this disease it certainly is not. But it's not a cure. It cannot continue indefinitely nor conclude with a happy ending. Then again maybe long term would be long enough for something else to come along, something to give families like ours renewed hope. Although in the world of paediatric oncology it would have to be very long term for that to be the case, unless there are some pretty dramatic changes over the next few years.

I'll stop now. I'm getting way ahead of myself. Everything remains as uncertain as it ever has. It's just of all the things that run through my mind each day, every day, these thoughts start to crop up more and more often.

Of course none of us can predict the future, all we can do is get on with living in the present. High-dose starts on Sunday. The next phase in this journey we've been thrust into.

Thursday, 20 January 2011

A gathering storm ...

Fear, sadness, guilt.

I did something last week that I haven't done for a while. I cried. Not a big cry, just watery eyes and a few solitary tears that managed to escape and run down my face. We finally received the schedule for Adam's high-dose chemotherapy with stem cell transplant. I've talked about it often enough, usually with a deep sense of foreboding, and now it's almost upon us. He will be admitted on Sunday 30th January, and start treatment the next day. This week he has kidney tests and scans Monday to Wednesday, and we are also due to meet his consultant again at some point.

I have a deep seated fear of this part of the journey. I have seen children myself being rushed from the Marsden to St George's intensive care unit with any range of severe side-effects and complications. I have heard and read about many many more. From life-threatening infections that cannot be fought off naturally by a non-existent immune system, to multiple organ failure brought on by the heaviest possible sub-lethal doses of chemotherapy. The potential long-term side effects are themselves severe and widespread.

Of course some children cope much better than others. Some exhibit very few side-effects and except for the almost inevitable bouts of vomiting, loss of appetite and pretty much instantaneous hair loss they come through unscathed. Adam? We just don't know. Once more all we can do is fear the worst ... and hope for the best.

As well as the fear I also feel a profound sadness at what Adam is about to endure. He really has no idea of what is just around the corner. How ill the doctors, with our consent (I refuse to use the word blessing), are about to make him. He is a happy, jolly, funny little seven year old boy at the moment. He knows he will lose his hair again. He's told us that he wants to have it shaved off in advance because he "doesn't want to have it all just fall out". Sure he's had some nasty, vile drugs before – chemotherapy that has made him feel like shit and ripped out the lining of his throat causing painful mucositis that's prevented him from being able to eat or drink. But we can't tell him that's what it's going to be like again, only probably much, much, worse.

And so to guilt. He has been remarkably well in himself these past few months, since recovering from surgery in September. He is eating well, has grown several inches and gained several kilos in weight. He does everything we ask of him in terms of his home treatment plan and daily supplementation. And now we are putting him through the most brutal of treatments. We are choosing to make him incredibly sick and even put him in a life-threatening situation. I know we have no other choice, except to take him off conventional treatment altogether. I am a logical person, but that is not sufficient to assuage me of this guilt. Guilt that is worsened by the knowledge that this treatment isn't even designed to fight the disease that we know is still there, that we can see on his scans, that has been as stubborn as ever and resistant to treatment since October 2009. High-dose is a consolidation therapy, it's purpose is to prevent the disease that we can't see from causing a relapse in other areas. The same is true of immunotherapy that is yet to come.

I've thought about how different things are for us now compared to what they would have been had Adam followed the standard response pattern. Children go from induction chemotherapy, to surgery, to high dose and transplant almost without pause. We are not on that roller-coaster. We've had time out, discovered a way of living a semi-normal life in the dark spectre of this horrible disease that is Neuroblastoma. So whilst it is with dread that we step back into that other world we also do so knowing that Adam is a lot stronger than he was back then. He's well nourished, and we can afford for him to lose weight. We have been following a nutritional supplementation plan, trying to get his body in the best shape to withstand the storm that we know is coming. We have a plan in place to take us through high-dose that we hope will help to alleviate some of the most common debilitating side-effects; the mucositis, the lack of food intake. We built Adam back up again after surgery and we can do so again this time. And of course we'll make sure he always feels loved, and try to put that infectious smile back on his face just as soon as we can. Bring back our happy, jolly, funny little seven year old boy.

Please wish Adam a safe and speedy passage through this next phase of treatment, and hold him in your thoughts over these coming weeks. If all goes according to plan he'll be in hospital for between 4 and 6 weeks, depending how quickly his immune system reboots following the stem cell transplant. For some it can turn out to be much longer than that.

Tuesday, 11 January 2011

Another Day …

Another day comes and goes. Adam is still isolated in his lead-lined radiation chamber. Alison is in the 8” x 6” parents sleeping area. I am at the CLIC Sargent House five minutes walk from the hospital. Jacob and Jessica are at home with Nan and Grandad who have been holding the fort for us.

In the next day or two we will all be re-united, though it will be at least another week before Adam and Jake will be sat together on Jake’s bed playing the Xbox, or Adam and Jess are doing battle with intergalactic spies and saving planet earth. We’ve decided to remain up in London until Adam’s radiation level falls below the point at which he can have unrestricted contact with adults; fingers crossed that will be tomorrow. However, it’s a big (in relative terms) step down before he can have unrestricted contact with other children. Trying to get his levels monitored at the Royal Marsden has been a bit of a palaver so we will now bring him back to UCH a week or so after we leave to be re-checked.

Saturday, 8 January 2011

MIBG Therapy #2 …

A fortnight ago we were enjoying Christmas Day as a family at home with my parents, the kids all having fun with their new presents.

A week ago we were enjoying New Year’s Day at Alison’s parents along with her sister’s family, all having fun and playing games together.

Today we are stuck in the cubby-hole that is the parent’s room in Room 1, T11 North at University College Hospital  London, with Adam secured in the adjoining lead-lined room whilst the amount of radiation he gives off subsides to a level at which he can be safely re-introduced into society. If it sounds like a prison sentence then that’s because it is. Despite having a laptop, PS3, PS2, Nintendo Wii, Nintendo DS, DVDs, books, paints, crayons, and games aplenty Adam is still denied his freedom. There are times when his confinement to the 12” square room starts to get to him; “What can I do?” he moans “I don’t know what to do.” He resorts to climbing along with window ledge or balancing precariously on the legs of the large metal shields that adorn his bedside, placed there to afford protection to carers and nurses.

This is second administration of I131 MIBG therapy that Adam has undergone. Having kept a pretty much daily diary during our last visit I will spare you all the details this time round. The only major change is our accommodation outside of UCH. Last time we rented a flat privately so that we could prepare all of Adam’s meals and try as best we could to maintain his daily routine. Since then Paul’s House, a CLIC Sargent Home from Home has opened literally five minutes walk from the hospital. I say house; it is actually three adjacent 4-story houses in a terrace, knocked through in various places to form a very impressive, well thought out, and extremely comfortable ‘home from home’.

Yesterday Adam was taken down to the fifth floor for his post-administration scan. As any parent will tell you these are horrible times. When you get to see in real-time the disease appearing before your very eyes on the lab technician’s monitor. I used to look away when Adam was scanned the first few times, but now I do sit and stare at the screens for the duration.

It’s a fact that post-MIBG therapy scans tend to show up more disease than diagnostic scans. The radioactive agent is different (131 versus 123) and the therapeutic dose is obviously a lot higher. We haven’t received the official report back yet, but there was clearly extensive avid uptake in all the same areas as before. I am not expert enough to read anything more into what I saw, or to infer what exactly that means. I am guessing the first dose had little or no effect. That would be par for the course with the way that Adam has responded (or rather failed to respond) to treatment thus far.

It doesn’t get any easier that’s for sure. What I wouldn’t give to be moaning about having to go back to work after the Christmas and New Year holidays, or about having to get up early to get the kids off to school. What I wouldn’t give to have my old life back, but of course that’s gone now and never coming back. This is what we’ve been dealt and we just have to get on with it as best we can. Beyond that all we can do is hope.

Thursday, 6 January 2011

Sorry … but it was all fun

What can I say? Apologies that it’s taken me this length of time to post an update about the festive season. Christmas and New Year in the Bird house was a fun affair from start to finish. Everybody, including Adam stayed fit and well. Excepting the bit about having a child with an aggressive life-threatening disease, it couldn’t have been much better. Santa was kind to all of my children, and furnished Adam with a new Nintendo DSi XL. He spent the next few days gleefully taking hideously distorted photos of various family members. Me with one super-sized eye and two mouths is not a good look.

My parents stayed with us over Christmas itself and there were also other family visitors during the week that followed. Neither Alison nor I have any family who live close to home. Alison’s parents live in the West Midlands and mine just inside the Norfolk border. Adam’s illness has changed all our lives, but we are blessed with two sets of parents who have offered unconditional support from the moment Adam was diagnosed. I dread to think of the mileage they’ve put in over the past 20 months … let alone how much they’ve spent on fuel!

When it came to New Year we felt confident enough about Adam’s wellbeing to seriously consider travelling up to Birmingham to visit Alison’s parents. When we mentioned it to the children they were universally enthusiastic about the suggestion. As Adam himself said ‘I haven’t been anywhere except home and the caravan for so long’. And so early evening on New Year’s Eve we packed up the car and headed up the M40 and out of our 20 month old ‘comfort zone’. No hospital on standby, nothing. We had a lovely couple of days up there. ‘I do like going places for a visit’ said Adam of our trip. On Sunday afternoon we headed back home to prepare for our second trip to UCH for Adam to undergo another round of I131 MIBG therapy. ‘

So there you have it. Sorry for the lack of updates … but it really was all fun. It was how Christmas should be and we long for many many more just like it.