October 7, 2013

Today was a Grand Rapids clinic day, and the appointment went well. SD has had a slight cold for close to a week, so we weren't sure if his counts were going to be lowered because of that, but they were about average for him.

Speaking of counts, SD's have been suppressed for quite a while now, which got us to thinking about the amount of oral chemo he has been getting. We like to keep close track of his medication intake, which made determining when he had last taken a full dose of his medication easy. Realizing that it had been five months since his last full dose, Stephen decided to study all the records we've kept since Maintenance began in August 2012. After creating a bar chart and pie charts, we realized that since beginning Maintenance, SD has missed the equivalent of 25% of his oral chemo; in just the past five months, he's missed the equivalent of 48%!

Obviously, in spite of the good results of the metabolites testing this raised concerns for us, so we decided to point this out to Dr. Kurt (SD's main oncologist). Stephen gave his presentation today, and both she and Nurse Practitioner Mary agreed that we need to be more aggressive about getting his dosage levels up, hopefully to at least 80%. Ideally, they'd like him at 100%, but some just can't handle that. They came up with a new game plan for boosting his dosage levels; please pray that the best all-around plan can be figured out as soon as possible! This is a balancing act with many considerations. We have really enjoyed seeing SD have more energy and be more cheerful the last few months, and it would be great if the doctors can find a plan with enough chemo to kill the cancer but not so much that his personality is disrupted.

When we asked if the past five months of missing nearly half his chemo was something to be concerned about, Dr. Kurt said that she didn't think so. She said there is plenty of time for him to catch up. Both she and NP Mary were very impressed with and appreciative of Stephen's work; Dr. Kurt even jokingly asked if he'd be willing to do that for all their other patients. :)

After SD's appointment, we got to spend a few extra hours with Grandpa Cleary, who has spent the past week with us. We went out for a quick lunch, followed by a trip to the zoo!

We parted ways after that; I think it's safe to say that Grandpa's presence is missed by all already!