I got a PM from a member wanting an update. I sometimes forget that there are other people who are hurting because of this and want to know what's going on. Thanks to everyone who has responded to this thread and who has sent a card or gift for Owen.
Over the last month(while I was home working) I was able to get some miles on the Challenger. This was going to be the real fun summer of cruising and going to shows with Owen. While on the road I couldn't help but glance in the back and see an empty seat. I'd be lying if I said I didn't start crying. It's an awful feeling to be near tears 24/7. It's been like that for my family since December.
His last lumbar puncture showed that there were still cancer cells in the spinal fluid. Owen was getting high dose chemo however his type of cancer is highly resistant to radiation and chemotherapy. He was originally scheduled to have four rounds of the high dose chemo but that has changed. The last two rounds were canceled because it wasn't doing anything. Owen is now on a newly developed chemo that has only been used for about six months. It took 18 months to develop at St Jude. I'm not sure if it's considered experimental or not but it definitely hasn't been around for long. It's supposed to more directly target the spinal fluid. I have no idea how long Owen is going to be on this chemo. As of right now I think it's kind of open ended.
This new chemo has been harder on him then the high dose chemo. They really weren't kidding when they said every person reacts differently to chemotherapy. Owen has been having very bad headaches that sometimes make him vomit. It's hard keeping him calm during one of these severe headaches. He is very anxious and wants to go back home. I just started keeping a journal of when his headaches show up and if he vomits. Hopefully this is a side effect of the chemo and not an issue with his shunt.
The only positive news I have to share is that he weighed 30.6 lbs today. The NG tube feedings seem to be going well. When I left in May, he was skin and bone. Now he's much heavier and has a nice layer of fat on him. He looks like a different kid.
