It’s been a while since I’ve written an update.  That’s mostly because things are fairly routine, and we aren’t learning much about his disease progression or cure right now.

The signs of treatment have started to show in the last week, though.  Alexander’s hair started to fall out late last week, and while Christy was with him in Nashville, the molting accelerated.  He agreed to let larger-than-life Luka shave his head (I think he would let Luka do just about anything to him if it meant getting to ride in Luka’s car).  That was a good move, because his hair is everywhere now.  The sides and back of his head are devoid of hair from rubbing those areas on beds and pillows and such.  The top of his head still has some hair, but it’s patchy.  He looks like a cancer patient now.

He also looks like a cancer patient because he’s losing weight.  He’s not gaunt by any stretch, and he does still have some appetite–he ate pizza for lunch today–but after weeks of only having a few hours a day to eat and not being in the mood to eat for part of that time, he has lost a couple of pounds, and it shows.  He’s thinner and not as sturdy as he was before.  We’re glad he started from such a place of sturdiness, because we still have a couple more weeks of this before he gets the chance to regain his strength.

This week he has had a couple of very difficult wakeups from anesthesia.  On Tuesday, he had an MRI simulation to prepare for his tumor bed boost treatments (proton radiation directed specifically at the tumor bed).  We hoped to learn whether he will receive a boost only to the tumor bed or to a spot of concern on his spine also, but we have not heard the answer yet.  His MRI was done following his radiation treatment, which meant he was under anesthesia for a longer time than usual.  His wakeup after that longer anesthesia was very rough, with more severe rage, crying, and screaming than usual.

Yesterday (Wednesday), his wakeup was even worse.  I didn’t think it could get more heartbreaking than hearing him plead with us to take him back to RMH and get him out of the hospital on a day when we had to take him to get a shot in the arm and couldn’t leave.  Yesterday was more heartbreaking.

“Alexander, we don’t have to go get a stick!  We just have to do one more appointment and then we can leave!”

“Wobbly medicine!  Please!”

(Thinking I understood him) “You don’t want to get your wobbly medicine?  You don’t have to have it again until tomorrow.”

“No!  I want my wobbly medicine!  Please!”

After weeks of being scared of the feeling of the wobbly medicine, he was saying he wanted to take more of it to go back to sleep, rather than have to suffer through the feeling of waking up.  It was the most heartbreaking thing he’s said.  I confirmed with the anesthesiologist that propofol is not chemically addictive–it isn’t–and then we had to spend half an hour sitting in the hall with our angel and telling him he could not stay and get his wobbly medicine, that we had to leave.

But Alexander does get over that feeling, and he is still a happy, playful boy at his core.  I’ve attached a couple of pictures that show his hairlessness and his playfulness.  He loves music, and he loves to play in physical therapy.  We cherish his happy moments more than we ever have.