Chemo treatment #7 down-12 more to go!

Pretty uneventful appointment. We went in at 1:00 p.m.. ran down to the Pharmacy in the basement and dropped off his prescription for his Glutamine powder. Back up to the 2nd floor for Chemo.

Weight: 9.7 kg - down 1 lb 1 oz from last week. I am very, very surprised he lost so much weight. I really, really thought he would be up from last week since the diarrhea has come to a halt, and he has been eating more. So confusing, yet frustrating at the same time.

His nurse came in shortly after his vitals, with the Vincristine, Dactinomycin, Zofran and a 100 ml bag of fluids. Whenever you see that bag of fluids come in, you know your gonna be there for a while. She proceeded to access his port, and pushed through the Vincristine. Followed by the Zofran which was pushed through the IV for 10 minutes, then came the evil Dactinomycin, which was pushed through over 15 minutes. She came back in and started the IV bag of what I call "juice".

Mary, the NP, came in between all of this and we chatted for a bit. She said that his fluid intake is definitely not where he should be (he drinks no more than 20 oz a day). It would be fine, IF he was eating like a normal child, but, still, when you have one kidney working solo, you need to drink as much as possible - regardless. So.. we really need to work on pushing fluids on our little guy, which is a big problem since he hates any sort of 100% juice. He will drink a scant amount of Gatorade, and some water here and there.

I mentioned to her that we are getting little to zero sleep at night, and it doesn't help much when he kicks and kicks all night long. She pretty much flat out told me that she didn't know why he was doing this and to try and give him some Tylenol before bed. (Not in a mean way, she just didn't have an answer for me!) It could very well be that he is experiencing pain, but we don't know where. Well, I didn't feel particularly comfortable giving it to him last night since he was pumped full of so many drugs yesterday. How much can his little body tolerate, seriously. We will try tonight, and see how it goes. We are going to discuss our options next week, due to the weight loss and limited intake with food/liquids and also the night time pain issue.

Went back down to the basement to pick up the Glutamine (which his insurance did not cover, by the way. Had to pay cash, wonderful!) The appointment took nearly 3 hours from start to finish.

ANC: 2,110
WBC: 5.7
Hemoglobin: 10.3
Platelets: 573

Next appointment set for Wednesday, the 24th.

On a side note: He is cutting his first top front tooth, on top of all the other effects he is feeling from the chemo. My poor little guy is a miserable wreck!