What a day. I didn't go with Diane and Cody because I was assured that the procedure he had was low risk. That didn't keep me from worrying. It turns out the procedure went pretty well. Diane said that Cody was a trooper all day. Although we haven't received any results from the recent tests, the news we did receive was not the best. First off, the meds that the doctor prescribed to Cody the other day was so awful tasting that Cody was gagging. So today the doctor prescribed him fluconazole which fungicide in pill form. So we get word from the pharmacy that my insurance will not pay for this drug because it is so expensive and they want to review the case to see if it is really necessary. They expect to review the case within 24 hours. In the mean time this potential fungus will keep growing. This is just one of many issues that add to the stress of having a sick child. There are other insurance issues but I won't get into that right now.
Being a member of BOP I have been hearing of shortage issues with the 3f8 antibodies. Well we find out today that the do not have enough antibodies for Cody to start. The doctor from MSK wants to keep Cody on the low dose chemo until they have more available. This is all starting to build up on me again. It's not enough that he has to battle this awful disease but now he has to wait for a drug to be approved by some bean counter and to have more of another critical drug to become available. If God is testing me why can't I be the one who is sick? My son shouldn't be going through this...
To top the day off, I came home to run this evening. I've been doing 5 mile runs every other day and it has been getting easier for me. Today it is nice and cool with low humidity. I start out running and my legs felt very sluggish. This really doesn't make much sense because it's usually very hot and humid days when this happens. On top of the legs I just couldn't get my breathing under control. I couldn't seem to get enough air in my lungs. I'm disappointed to say that I did 3 and called it quits.
Update: medication denied so I have to take him in for an IV med. He would have to take about 5 other drugs and they would have to fail before they will approve another. Meanwhile the infection just keeps growing. Real nice, don't you think?