Today has been another trying day as Lucy continues to battle vomiting. A safe estimate would be 20 times in the last 48 hours. Of course our first fear is a shunt failure. I have checked, rechecked and checked again the list of symptoms the doctors gave us to look for that would indicate a problem with her shunt. Nothing seems to fit, though. You would almost have to see it to believe it, but she will vomit and then immediately return to playing, watching TV or laughing and talking. It's almost comical. That being said, she is still vomiting at an unusual rate and that has the doctors concerned. Today and yesterday she was delayed in receiving her radiation by 2 hours due to the fact that they could not get the vomiting under control so that she could receive her "sleepy medicine."
So tomorrow around 10:45 she will have a CT scan to check for any blockages or other problems with her shunt. I would like to ask that you pray specifically that everything will be all clear and that the vomiting will subside now that they are doing spine and brain radiation boosts. In theory once she is no longer receiving whole head and whole spine RT, many of the yucky side effects will start to subside. Who knows....maybe she will even get some of her appetite back. I am also anxious to see her energy return. She just seems so run down lately. Hardly any stamina these days. I know this all part of the RT, but I'm ready for our upcoming break from treatment.
Lucy has been prescribed a drug called Periactin. It is an appetite stimulant that is used very often in children and has proven to be quite effective. The nutritionist is really pushing us to give it to Lucy, but we are a little hesitant. First of all, even if I give it to her and she wants to eat, everything tastes gross right now. Lucy says that all the food she tries tastes yucky. That was an expected side effect of Radiation. Another reason I am hesitant is that due to her age, she is one of the last children to receive RT each day. I think it would be inhumane to give her an appetite stimulant and then keep her NPO until 4 or 5 each day. So...we have made the decision to hold off on the medicine until the end of RT. After she has completed this phase of treatment we will begin to give it to her and pray that we can pack on about 10 pounds before we start Chemo. I know that this is wishful thinking, but it would be wonderful to plump her up before Chemo takes it back off of her again.
As always, though, Ms. Lucy is a fighter. She's so brave and strong. Here is a picture of Lucy on her bike that is WAY too small for her. We took her to get a new bike that same night and a HELMET. Please don't fuss. I promise she wears one. Seriously...the child has a shunt. Not a smart move to do anything these days without a helmet. I'd have her sleep in one if I thought it was necessary. We just had to buy one and make some adjustments to it so that it would fit around the shunt and not hurt her. I just think its great that she even wanted to ride.