The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Thursday, October 27, 2011

another post-holiday update

Well, it's been a good couple of weeks with lots of news to report.

The October holidays were a success, not least because of the company and help of my mom who is still here (until Nov 9). We had good weather, good enough to get out and walk a lot. The second week Caleb had football camp, which he enjoyed but was equally keen to finish. Hmmm, may not be a star footballer this boy, we'll have to find something else that catches his attention! Adam and I walked nearly every time to take and pick brother's a good half mile to the Sports centre, so I would guess Adam walked in excess of 5 or 6 miles last week. Pretty good for a cancer patient, right?

Speaking of which, the doctors and nurses are amazed at Adam's progress, and particularly the way he's sailing through this current round of chemo. He's had minor (comparatively speaking) mouth trouble for a few days after each of his treatments, but nothing like what they were expecting. I am so proud of him--the energy that both his brother and sister display in their constant movements, acrobatics, exploration and attention to the world around them is mirrored in Adam through his being able to take a full whack of chemo, turn around and say thank you, go to school, come home and eat, sleep well, and do it all again the next day. I know it's only a matter of time until the bubble bursts, but for now we are glad.

The only shadow is the fact that once again Adam didn't "make the cut" on the last MRD test. His result was just slightly higher than the cut-off for continuing as is or pursuing more aggressive treatment, i.e. a bone marrow transplant. As always, Adam is a grey area for the doctors, but our consultant is wonderful and called several of her colleagues to confer. The answer they all gave was "continue with the treatment he's on for now", much to our relief. They feel that this gives Adam the best chances of survival and cure. The way Adam has been going I am beginning to feel that they might be right.

This last sentence of course reveals the fact that I've had my doubts, and who wouldn't if they are being honest? It's so weird to live at the edge of life, to walk a narrow ledge over a deep precipice with your son and know that at the end of the day you will either fall in or stay standing. It's one or the other, and at the beginning I was sure Adam wasn't going to have the strength to handle the treatment. Now, watching him take a blow and heal up and keep going, I'm feeling my hope grow each day that he might just do it. Seeing the docs perplexed at his good response makes my heart swell, and no matter what I'm so happy that he's coped this well so far and been able to go to school and live a (mostly) normal life.

Ok, final news: After two letters to Justin Fletcher, aka Mr Tumble, asking him to come to Aberdeen to meet Adam and his friends, I had a response. Yesterday a woman called from the Make a Wish Foundation asking if Adam would like to come to Surrey and meet Mr Tumble in person!! It seems that Justin called her and asked her to contact me, and said it would be best for the meeting to happen through these channels. WOW!! So now we wait and see how the logistics lay out, and hope that Adam is well enough when the time comes to make the trip. It would be so amazing, and I'm so grateful for the glimmer of hope that Adam might one day finally get to meet his muse. Thanks Justin--thanks Mr Tumble!!! :)

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