Oops!

Catherine had a pretty good week last week. Save for a couple of days when she could barely get out of bed, Catherine was actually full of energy and did great at camp and at a couple of playdates she had. Last Sunday we went to a picnic at the beach. She was very much into it doing the potato sack race, a hot potato game and the limbo. She and Alex had so much fun. I'm glad we decided to go and that the weather held up.
Unfortunately, her appetite took another nosedive and all she ate between Monday and Friday was an ice cream cone, a peanut butter and jelly sandwich, 2 hot dog rolls and a handful of munchkins. As a result she lost 2 pounds. She now weighs what she weighed 2 years ago at this time. Dr. MJ said that we really need to get her to eat particularly with the next phase of the protocol coming up. Somehow grapes came up in our conversation. We have been told that grapes are something we should stay away from, particularly when Catherine is neutropenic (they are very difficult to wash). But given that Catherine won't eat anything and she keeps asking for them, Dr. MJ suggested I go out and by one of those vegetable/fruit wash solutions. She said that she uses them and that they actually make the food taste the way they should. She also told me that I would be surprised by just how much dirt comes off the fruit. Well, was she right. The color of the water after washing some grapes and strawberries really grossed Dave and I out. And, the fruit actually looked better after washing it with this stuff. So that said, I highly recommend everyone use this stuff to wash their fruits and veggies. It seems that every grocery store sells them.
Now for the oops part. Every week, I am asked to go through all the meds I give Catherine at home. For the first time this week, they asked me what dose of the 6-MP I give her. When I said 75 mg Cindy, one of the nurses seemed shocked, but I told her that was what it said on the Protocol. When Dr. MJ came in and looked at Cindy's notes she also asked me why I was giving her so much. She also asked me if someone told me to do that. I told her no, but that it said it on the Protocol which is like my new Bible. Basically, the number on the Protocol is used in some calculation to determine the dose which is based on Catherine's body surface area. I should have only been giving her 50 mg (which is what I gave her during the Consolidation month of the Protocol). Well, it was like a lightbulb went off for everyone. The reason Catherine's counts had dropped and not recovered very quickly was because her body needed to work through all the extra chemo I was giving her. Thankfully, I wasn't doing any damage to her. So we are back to the normal dose. Good thing too because her platelet count has been steadily dropping and getting a little too close to a level where they would have to postpone the start of the next phase, which I just want to get started.
Now our new thing this weekend is that Catherine has developed mouth sores. Poor kid. They are so painful for her - she is having trouble eating and drinking. To get rid of them, we have to make her rinse with some prescription mouthwash. She screams while doing it because it's "spicy", as she puts it (it smells like Listerine which we all know burns even normal mouths). But, as usual, Catherine is a trooper and even though she is screaming at the top of her lungs, she does what she needs to do to get better.
Finally, I just want to thank our friends here in town. When Catherine was first diagnosed, they all rallied and put together a schedule for people to cook for us twice a week. Now with the toughest part of our protocol ahead of us meals will be once again cooked for us and as always I am thankful and touched by all the people who have been there to help us get through each day. Without them, I probably would have gone completely out of my mind by now and be eating only PB&J sandwiches! You all know who you are and thank you again!!