Welp, not too much to report here. The excitement for the day was the kid that puked in the hallway...not a cancer kid, a sibling. Gross and stinky not to mention that if that kid has a bug of some sort she just puked in a hallway full of kids with no immune system. OH the fun never ends.
Dad was here today, brought donuts and coke.....food of the gods. He hung out so I could shower, I am much nicer when my head is not itchy from dirty hair. Jed is awake right now..of course the Simpsons are on. We watched Family guy and futurerama until about 3am this morning. The only prob with that is Jed then sleeps all day but I am up before 6. His jaw still hurts. Of course I waited & waited for the Dr and when I went down to meet the pizza delivery guy the Dr showed up. Jed said the guy examined him and said "HHmm, we are not sure what is causing the pain and swelling " then he left. This is a new dr on our team. He has over 15 yrs ped oncology experience but dude and I might have to have a chat. I might have to explain that HIS job is to find out WHY there is pain and swelling. The swelling is not worse but it is not better either and after 2 antibiotics and an antiviral for the last few days it should be improving. I mentioned earlier that his white count is .3 and the rest of his counts are rising. He is getting GCSF, a drug that boosts your counts,,,Dr. Frieburg calls them fake counts. The point is to give him some sort of immune system to help his marrow start to make it's own blood. It is so depressing up here. There are quite a few very sick kids. I spoke to Angelina's mom, Tammy today. She said they are starting a new drug on Thursday. I have read about it and it sometimes puts chemo resistant kids into remission...so cross your fingers there is about a 10% chance it will work. The main prob with this drug is that it damages your lungs and Angelina is not over her bout with pneumonia. It comes right down to the basic question all the parents up here face. Your kid has cancer, here is the treatment, the treatment can kill them but without it they will die of cancer. If you have a child that continues to relapse then you have to continually revisit that question. We are not going there. That is not a group I want to be a member of.
ok, enough of that...Jed ate a personal pan pizza for dinner. (me too, just couldn't help myself). The pizza hut near here delivers to the hospital I just have to go to the main entrance to get it.
He is a little restless and the pain is back tonight. He has a PCA but it is not covering the pain tonight. If he can't relax soon I will ask them to up his dose.
I am almost finished with book #5 since Thursday. Thank goodness for ebooks. I wish I was doing something, I didn't bring any knitting.. I read, and look a bike parts on line, then I read some more and then look at knitting patterns! In my head I am making my bike awesome and knitting cool stuff. In reality I am sitting on my A#$.
Well this was a long post, with no new news in it!
Jed just changed all the wheels on these little skateboards that he got in his goodie bag. He has changed them 3 times now!
Ok that's all,
Love J & K