Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Friday, July 6, 2012

Two Trips to Charlottesville - Part 2

If you’re starting to lose count, this week makes the fourth trip to Charlottesville in 3 weeks.  At least this one was planned.  Calum needed to have his pins taken out, so we decided to make the most of it, take all the kids and have a meal out for once.  The morning was busy with prepping bags and a blood run, then packing food for the journey, enough water for an army, all of Adam’s medical supplies for the day, and entertainment for the kids.  Also in the car were Adam’s favorite fashion accessories, his pee-pots.  Since he can’t go more than 30 minutes without a trip to the toilet, he has to “go on the go” (if you know what I mean) every time we a have relatively long car journey.  It was a super hot day, but we made it to Charlottesville in one piece.  Getting out of the car, Adam accidentally dropped his half-full pee-pot on the ground.  The top popped off, and pee sprayed everywhere.   The inside of the car, Adam’s legs, everywhere.  Adam was (as usual) bursting for the loo, but now he had to find a way of disposing a plastic bag full of pee, wash his pot and hands, and figure out what to do about his jeans.  So he trotted off, and I had to corral all three boys, and our 37 bags full of stuff up the ridiculously steep walkway to the Kluge Center.  Calum’s appointment was reasonably straightforward, but I found myself asking God several times WHY Calum had to be the one to break his arm.  If you don’t know Calum, he is the Scarlett O’Hara of this family.  He feels everything so much stronger and more deeply than anyone, and he will remind you several times a minute how much more difficult his life is compared to the rest of the world.  The doctor’s visit was filled with the expected drama, and the pulling of the pins was horrific.  It took 2 nurses and 2 doctors and a medical student to make it happen.  There was an awful lot of ear-splitting screams followed by several minutes of Calum declaring that he wanted to die.  We finally got him to walk back out to the waiting area, where Adam was waiting with the two younger boys.  We stayed in the children’s play area for a few more minutes to let the kids play before getting in the car.  I looked around and took note of the scene my family now causes when we go out.  Littlest Finlay was excitedly going around the room showing me the different toys, shouting “Ungh, UNGH!” and using sign language to get his point across.  Ali was stimming like crazy, because unfortunately he hasn’t had his supplements in weeks.  He does this thing now where he will lunge toward something that catches his eye, touch it with his fingertips, flip his hands over to tap it with the backs of his fingertips, repeat this several times, then lick his fingers.  So he was making his way around the room, LUNGE, touch-tap-touch-tap-touch, then lick, lick, lick… LUNGE, touch-tap-touch-tap-touch, lick, lick, lick.  This includes any people that cross his path as well.  Before they realize that someone is tapping them on the butt, he’s lunging after something else.  It’s infuriating when you are trying to walk across a busy parking lot, and he has to stop to touch every single car, and he is lunging in front of you to tap the ground in between.  Calum was sitting in a chair, soaking wet and blotchy from the tears, and wearing his formerly-broken arm in a sling.  I’ve got my hideous black eye.  And Adam is wandering around the building with his trusty Camelbak, tubes hanging out everywhere, and getting lost on his way back from the bathroom… twice.  I didn’t know whether to laugh or cry.  I suppose I did a little of both.  The other mothers in the waiting area wouldn’t make eye-contact with me.  I think they thought I was a little bit nuts.

We managed to have a meal at Burger King and changed Adam’s bags in the sweltering parking lot.  We made it home in time for a little snack and to put the kids to bed.  I’m sorry to admit, but there was no teeth brushing that night.  I was so exhausted, it took all my strength to get them into their pyjamas and kiss them goodnight.  I barely managed to stay up until 10:30pm and prep and change Adam’s bags before collapsing into bed.  And in 4 weeks, we get to do it all over again for Calum’s next follow-up appointment.  That’s if I don’t pile the whole family into the Mazda and do a Thelma and Louise off a cliff before then.  Anyone know of any good cliffs in Clarke County?

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