Treatment 2

Yesterday we were set to arrive at the outpatient clinic at 10:15am where we wait for the outpatient room to be ready.  This time we arranged for Ethan to come and meet with Layne, the child life specialist, so that she could explain Jake's illness to him.  She explained that Jake has a tumor and that it's called Ewing's sarcoma and that it is cancer.  He asked questions like "Why did he get it?" and "Do we need to get rid of it?" which were really good questions.  He had it stuck in his head that the accident that Jake had in the street is what caused the tumor so Layne explained repeatedly that cancer is not caused that way, and also that he can't "catch" it from Jake.  She gave him a "Beads of Courage" sibling necklace and gave us a kit of beads so that we can give them to him as we see fit.  Layne said that his responses to her explanations were almost text book and that he seemed to grasp the concept with no problem.

I think Jake is starting to realize that he goes to the hospital a lot and he isn't as excited about it as he was in the beginning.  I had to take him for blood work on Wednesday to make sure that his white blood cell count was high enough to receive chemo yesterday and the entire way to the hospital he whined and cried, "Mommy, please don't make me go to the doctor. I don't want to go.  I'm scared."  Again on the way to Egelston yesterday he made the same complaints.  It sucks because he is at an age where there is no good way to explain why.  We tell him that we have to in order to make his boo-boo go away but that doesn't make a dent in his cries.  He repeats it over and over until all we say is, "I know, but we have to."  I just pray that he doesn't remember all of this, or if he does it's just from the pictures that I've taken where he is smiling and happy. 

We got to his room on the outpatient wing at 2:00pm and settled in for our stay.  We got some lunch and waited for the chemo to start.  The nurse began his etoposide and he started coughing, his faced turned splotchy red, and he vomited.  The nurse disconnected the etoposide immediately and called the doctors in.  They said it was an allergic reaction so the decided to halt chemo until morning. They will try another form of the drug (etopophos) that will hopefully not have an adverse reaction.  Jake recovered from the reaction very quickly and has been in a good mood ever since.