Today is Friday, day 22 of treatment. In some respects it has flown by, and in other ways it seems like our life has always been this way. Today is just a shot of vincristine, and possibly a transfusion. Mike decides to go to Galveston and cut the grass and I take Johnny to the clinic.
Grace spent the night last night so Sophie is taken care of, and Joey spent the night at his cousin Daniel's house. Even though Daniel is a Senior in High School, he and Joey get along so well. They have a lot in common. They both love every video game on the planet! Both Grace and Daniel are great kids -- Grace is awesome. She can come over at the drop of the hat. I really enjoy just having her around, babysitting or not.
Each clinic visit I have a ton of stuff to bring. It's freezing, so I bring a small blanket and pillow, games, and the portable DVD player. I also have a big 3 ring binder that I keep all of Johnny's records in. That way I can easily track of all of his test results and anything the doctors give us. Every Friday I TRY to bring less, but in case we are there all day, I want to be able to do something other than watch TV.
This morning Cara comes in and we have a nice long talk, she answers all of my questions. Then I apologize for last week if I seemed a little curt. She says she doesn't remember, but I'm sure if what Mike says is true about the way I acted, she remembers. Johnny's numbers look great, still WAY below where they should be, but he doesn't need a transfusion! YES!
I ask Cara about what all the abbreviations and numbers mean on the test results. I know what the really important numbers mean, but I want to know what all the other stuff is. She was very sweet about the whole thing. Because looking back, she could have easily said, "you don't need to worry about those, just keep your eye on these numbers". But she didn't. She took her time and went through each number, and made sure that I understood what it meant and how it relates to the other numbers. Please don't ask me to explain it to you! It is incredible how doctors and nurses treat these diseases. They look at your DNA and all sorts of stuff to see how you will respond. Crazy!
Then Cara tells me that if she were in my shoes she would want to know every detail too. Actually she was diagnosed with a brain tumor two years ago! Talk about crazy... so she knows all too well about being scared and asking questions. I am so grateful that she spends the time with me to answer my silly questions. I just figure that if the number is important enough for the doctors to know, then I should too.
We go to the area where Johnny get his treatment. He lays down on a couch. We only wait about 15-20 minutes and the nurses come and give him his shot. They are great, no problems. And we are home by 12:30! I ask Johnny if on the way home he doesn't mind stopping to get Father's Day gifts. He says "No". As we get closer to home, I notice the effects of the chemo are kicking in. Still no vomiting, but it wears him out, and he just doesn't feel good. I take him home and quickly run out to get the gifts. There is a Barnes and Noble next door so I pop in to look for books about ALL.
Nothing! Well, almost nothing. I was able to find one book titled "100 Questions about Leukemia". But it mostly deals with adult Leukemias which is so bazaar to me. Most Leukemia is childhood, the adult type is rare. I buy it anyway. It turns out it is actually pretty informative. I still want to know more about Childhood Leukemia, but it will do. I guess because it changes so frequently, a book wouldn't stay current. Plus, Johnny is in a brand new study, it would be different anyway. I guess what I am looking for is a book like "What to Expect When Your Expecting", the book your doctor gives you when your pregnant. Just a brief month by month of what to expect. "Is throwing up at 2AM normal?" I could look it up! A reference book of some sort...