Friday, 10 May 2013

An update ...

After four years, though it seems like longer still, the final stage of our journey has begun. We have left America for the last time, our principle task now to make Adam as comfortable, and free from pain, as possible.

We haven't told Adam what the future holds, and neither do we intend to; for what purpose would it serve except to add mental stress and anguish on top of the physical pain? Jake and Jessica do know -- a conversation like no other I have ever had, or ever want to have again -- but it was necessary to be honest with them. For their sakes, please be sensitive with any comments.

Adam remains the same as ever. He reminisces about what he used to do when he wasn't like he is now. He talks about what he's going to do when he's better. He informs me that we can buy some more sticky velcro so his replica WWE championship belts still fit him when he's bigger. He asks me if he can have a pocket tool with scissors, and bottle opener, and screwdriver, when he's older? He wonders if the cricket bat we bought him last summer will still be big enough for him this year? Out of the mouth of a child, an embodiment of innocence even now despite everything he's been forced to endure. And they cut through my heart like a knife.

Just over a fortnight ago, on Tuesday morning, Adam went into theatre just after 9am to have a tube inserted into his chest, and 1.5 litres of fluid removed from his right lung. By 4:30pm he was in the car, connected to a 4ft hose into a chest drain collection kit, and hooked up to a portable oxygen compressor, on his way to Detroit airport for the flight home. Not the standard discharge process after such a procedure, but there was genuine concern that if we didn't get Adam home as soon as possible, he might not be able to fly. He was retaining large amounts of fluid throughout his body, and in the days prior to our return his output had reduced to practically nothing despite the repeated use of strong diuretics.

A huge thank you is due to everyone at Helen DeVos Children's Hospital for pulling out all the stops to get Adam home safely. And also to the cabin crew on our Delta flight from Detroit to Heathrow, who were helpful, considerate and patient with us throughout. I'm still not entirely sure how we made it back so (relatively) uneventfully, but we did.

Since returning to Epsom we've been to the hospitals we needed to go to, talked to the people we needed to talk to, and set in motion the things we needed to set in motion. We have access to the 24-hour symptom management team at the Royal Marsden, our community team are also able to provide round-the-clock cover when we need it, and we've been referred to the Shooting Star CHASE hospice in Guildford. Now we'll just take life one day at a time.

For the moment Adam is reasonably well in himself; he is comfortable and has even been back playing on the xbox a little -- something he'd shown very little interest in for many many weeks. Simply being home has been a huge fillip for him. He has a whole list of things he wants to do, places he wants to go, and things he wants to buy. Whether he's well enough to do any of them on any given day is another matter though. His fluid retention has resolved -- which two weeks ago we had seriously doubted it would, suggesting the immediate cause, at least in part, was a side-effect of the medications he'd been on.

So here we are. And it's turned out to be of no consequence how long I have known it would come to this. It's mattered not how long I have spent trying to prepare myself for it. I was not, and am not, prepared. Nothing could have prepared me; for how difficult, and painful, and unfathomable, the reality is.

We are now going to deal with things privately, in our own way. I'm not intending to update regularly, either here or elsewhere, it's just not me. Instead I will post as and when I feel I have something to say. In the meantime please keep my little boy, and his bigger brother and sister, in your thoughts and in your prayers.

18 comments:

  1. I've not commented before, but I've read your blog for a while now. I can't imagine what you are going through, but just wanted to say, you are all in my thoughts.

    Gem x

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  2. As ever sending positive thoughts your way. Children endure this wretched disease with courage unimaginable by the rest of us. This courage that Adam brings to everyone who knows him is strong enough and powerful enough to share. Keep smiling and telling jokes, along with hugs and cuddles and playing on XBOX it's the best medicine. x

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  3. We love you guys, Nick. So deeply sorry that you all have to endure this. Do what is right for your family. Love them and make precious memories. Our love and prayers are with you all.

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  4. Thinking of you all. Don't know what else to say.

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  5. Adam, his big brother and sister along with his mummy & daddy are always in my thoughts. Sending lots of love xxx

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  6. Adam, Jake, Jessica, Alison and yourself are never far from my thoughts. Sending you love, strength, and whatever else you need now and in the future. We're behind you. antonialou x

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  7. Thinking of you and am deeply saddened for you all. Sending love and prayers from Florida for your sweet boy. Bless his heart.

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  8. I have nothing whatsoever to say that will make it easier for you. The only thing I can say is that I'm incredibly sorry and that you are all in my thoughts and prayers.

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  9. There are just no words but you are all in my thoughts.

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  10. I think of Adam, of each of you, every day. And though I do not know any of you personally, you and your little boy will always hold a special place in my heart. Thank you for sharing as much as you have of your beautiful, sweet little boy and your own incredible courage and strength. -Laura

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  11. Oh my dear Birdies, I have no words, love and hugs to you all. xxxx

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  12. My thoughts go out to you all. Thank you for sharing Adam with us through updates. Hugs to you all. x

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  13. I may not know you, but you and your amazing family have touched and inspired so many people out there. This news truly saddens me, I hope you enjoy some quality time together now, and remember you have thousands of people out there thinking of you all xx

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  14. A lot of love sent from me and mom and I am sure from the whole family. Thinking of you all and its lovely to hear that Adam is comfrotable, chatty and optimistic. Stay strong all of you . xx

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  15. I just found your site. I'm a neuroblastoma mom. I am praying for Adam in the US. And praying for you, too.

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  16. I am Ryan's Auntie and wanted you to know I am thinking about you all. You are all in my thoughts and prayers xx

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  17. I've been following Adam's life for a while now and it breaks my heart. My little girl was also dx with nb a y ago. All our love and prayers to your family

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  18. Nothing can ever prepare you it is the hardest part of the journey my thoughts are with you all as you work through this. Thankyou for sharing this journey x

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