Interim Maintenance

Interim maintenance is the treatment phase CJ entered this past Tuesday. During this phase he will receive a chemo “push” every 10 days. This is a yellow liquid that is pushed through CJ’s port. He calls it his “energy medicine”. The treatment is over in minutes so trips to the clinic will be much shorter than what they have had to endure over the past couple of months. In addition to this chemo push, CJ will receive the PEG shots to his thighs periodically. This phase will last about 2 months. Then he goes into the delayed intensification phase and back on steroids for a couple of weeks.

Every time CJ goes to the clinic, they prick his finger to check his blood. You can imagine that he doesn’t like having this done and he hasn’t been too good about sitting still to let them do it. But Greg has come up with an idea that has helped so far. If you’ve ever had your finger pricked you know they use a disposable “needle” to do the stick. Well, Greg told CJ on the way to the clinic the other day that he thought CJ was so tough that they would have to throw away the needle after they stuck his finger. It would be too dull to use again. And sure enough, after the nurse did the stick, she had to toss that needle into the trash can. CJ was very proud that he was so tough. When they went back to the clinic this week, Greg wondered if CJ would still be so tough. CJ sat still, let the nurse stick his finger, and grinned when she had to throw that needle away as well. He showed Greg he was still that tough!

He also receives daily meds – much to his dislike! Getting CJ to take his medicine is a daily torture drill for Greg and Sheree. They have begged and threatened, punished and rewarded - but so far they haven’t found a magical fix to the problem. They always win in the end, but not without a serious battle. All I can say is, “Thank God he is a fighter!” That fighting spirit will get him through this long ordeal. And I’m so glad he feels well enough to put up the fight! I’ve been reading the blogs of other children diagnosed with A.L.L. and, in comparison, it seems that CJ is responding very well to his treatments. He has been very fortunate in that he appears to be tolerating the chemo treatments with minimal side-effects. During the last phase, he did have a few bouts of nausea and his legs still bother him at bit. But all-in-all, he seems to be handling all of this like a champ.

CJ has lost 10 of the 16 pounds he gained during the induction phase where he was getting daily doses of steroids. He is starting to look like himself again – at least as much as he can given that his hair is mostly gone. I think that bothers him a little. He has made a couple of comments about it, but he doesn’t really dwell on it. His personality is back, though. He loves to tease and play hard. It is so good to see him feeling well enough to run and play.

Thankfully, his counts are back up this week so he can leave the house for short trips and he can play outside. He really loves to be outside. While they were at the clinic Sheree asked the doctor about CJ’s breathing and a runny eye. She was really concerned that he may be getting the virus that is running through the family. After a thorough check, the doctor told her his breathing sounded great and he thought the runny eye was nothing more than allergies. He was right. The next day, CJ’s eye had cleared up and he was feeling great.


Save-The-Date! JULY 31 2009

A group of folks from St. John’s Lutheran Church in Lanesville is putting together a fund-raiser to help offset some of CJ’s medical expenses. I don’t have a complete list of activities, but there will be something for everyone. I do know they will be serving a spaghetti supper and are planning a euchre tournament, corn-hole tournament, a dessert auction and something for the little ones. I’ll provide a full list of activities later. I just wanted to make sure everyone knows the date and the location - July 31, 2009 at St. John’s.