Tuesday, 30 October 2012

Planning ...

Adam had another similar day yesterday; eating fairly well, home for lunch, moderate temperature during the afternoon. generally in good spirits although maybe a little more tired than on previous days.

Line removal is scheduled for tomorrow morning at St George's. There is no easy way to explain any of this to Adam, but nor is there anything to be gained by giving him unnecessary details, and certainly none of the brutal truths. We had a talk about it, he cried a little, we had a hug, we talked some more until he'd got his head around what he needed to get his head around. He's anticipating a couple of days of being uncomfortable, in the same way he was when his hickman line was removed. I nodded and gave him a pathetic "Well let's hope it won't be as bad this time." And he also knows he will need cannulas, and a new central line inserted once we get to America. I smiled and gave him a pathetic "Let's see what the doctors say once we get to America." Imagine trying to navigate an eight-year-old child through this nightmare, when all he wants to do is to be able to go out trick-or-treating on Halloween … which he might still get to. And be at home for his birthday … which he won't. What has my little boy ever done to deserve this shit?

Once Adam's line is out, and providing he remains clinically well, we need to figure out travel plans. Last time we flew with Virgin (who were absolutely brilliant) to Chicago and then drove 3-4 hours to Grand Rapids. But Virgin only fly to Chicago during peak season, and driving conditions are going to deteriorate as we get into the latter part of the year. So we need to figure out new travel plans. BA to Chicago remains an option, but it's crazy expensive especially if we want Adam to be as comfortable as possible on the 9 hour flight. Virgin to DC, or NYC, with an internal connecting flight would be a very long journey, plus there's the aftermath of Hurricane Sandy to contend with. Our only other option is a Delta/KLM flight to Detroit and to drive from there.

We'll figure something out. Because you just do. Because you have to.


  1. my heart breaks for you and for poor adam. you're all in my thoughts every single day. hang in there.

  2. Thinking of you all every day x hugs to Adam for tomorrow