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.


  1. A very different scenario indeed I know, but when I was at my worst and most helpless, all I wanted my family to do was to fight my corner for me. And that's what you are doing; you are doing everything in your power to give Adam the best possible chance.

    Thinking of you all lots and I'll be keeping Adam in my thoughts throughout the treatment. Everything crossed that it goes as smoothly as possible.

    Emily x

  2. Thinking of you all, every day. You know you're doing the right thing but I understand it must be so hard.

    If Adam could be cured with love he would be the healthiest little boy in the world.


  3. All the best to you and your family, especially your special little lad. My thoughts will certainly be with you all.


  4. I always think of you all when I'm having a tough day - nothing I go through can compare with these dark days you have.
    You have all been so resilient and strong - as we say in NZ, Kia Kaha = stay strong.
    Pip xxxxxx