Maintenance

Well, Logan started Maintenance today. It was a long morning at the clinic, but things went well overall. Since the beginning, Logan has been "on study" with the research group that our doctor is associated with. Up until now, that meant nothing to us as the treatment is the same on or off study. Maintenance is what they are actually studying. Now, the good news is that the "control" group still gets the standard treatment, so it is not like he could be placed in a group that gets nothing and puts him at a higher risk of relapse. So their are four "arms" of the study. A is the standard treatment (monthly cycles), B is the standard with one medication at a higher dose, C is standard but at an every 3 month frequency, and D is every three months with the higher dose. Now, for some reason, they would not randomize him until we walked into the door this morning. At which point a huge wave of anxiety and emotion came over me. Was I doing the right thing? What is going to happen? I know the doctor assured us that they would not have any of these arms if they did not think they were a good treatment option, but still I could barely hold it together. And the verdict is...Arm B. So, Logan will have monthly chemo at the clinic, spinal chemo every three months, oral steroids for 5 days every month, oral 6MP every day, and oral Methotrexate at a higher dose once a week. How do I feel about this? Well, one one hand I am relieved that he will be getting something every month as is standard. And the nurses told us that many kids go up to or close to the higher dose anyway to stay in a "therapeutic range." On the other hand, it would have been nice to only take steroids every three months. All of these mixed feelings made it impossible for me to wish for a certain arm. So, now we know, but we do wish we wouldn't have had to wait until this morning to find out.

So, we arrived 10 minutes before his 8am appointment, and then waited around until after 9:30 for them to actually start everything because they were waiting for the pharmacy to get the meds up to the clinic. They could not order the meds until he was randomized even though no doses or any treatments today would have been different. Oh well, it gave Eric time to drop Alexis off at school and then get there before they started anything. Accessing his port went very smoothly, and he didn't get too sick with it. He did fine with the spinal, just yelling at them for curling him tightly into a ball for the procedure. I am so glad they are quick with that, and we only have to be out of the room for a few minutes. Unfortunately we can still hear him yell at them through the door/walls. We kept him laying down for a little over an hour afterward and they gave him fluids. This usually helps him not be as sick. We are hoping that it will not hit him harder since he still has a cold, but will just wait and see. Finally they gave him his Vincristine in the port, flushed (which did make him sick this time), deaccessed him and we were on our way. We came home, had some lunch, and he was getting a little rowdy. Now, often I notice that he tends to get more rambunctious when he is tired but afraid he might fall asleep. So, I gave him a choice: go and lay down in a bed for a nap, or lay on the couch and I would leave the movie on. Of course he chose the couch, but he was fast asleep in less than 5 minutes. And, here we are. I am updating the blog, while he rests. Hopefully I can get a chance to fill out a bunch of paperwork for him (long story there) and to get a little work done too. Hopefully things will go smoothly tonight and the rest of the week.