Thursday, January 2, 2014

End of Cycle 2

Today was the last chemo for this cycle, Logan's 2nd cycle of Chemo.  While Logan doesn't get breaks between cycles now, like with the first medicine, it's still a milestone point where he will get an MRI to assess progress of treatment.  That will happen on Tuesday.

There's not too much new to report from this session other than we were out in good time.  Only about 6 hours today.  We had very similar conversations with the doctors about foot pain, side effects, etc.  We did resolve one medication issue while were were there.  After the doctors wrote as a prescription for a liquid medication last session, we had a very difficult time getting it filled at the pharmacy.  I went to 4 different pharmacies and talked to 5 different pharmacists and got very different answers from each.  Everything from "that doesn't exist and will have to be specially compounded" to "it exists but our store will not fill that Rx" to "we can order it but it will be a few day before we have it available".  We decided that it would be easier to just teach Logan to swallow pills so we don't have to deal with this problem in the future.  According to my good friend, the internet, kids can typically learn to swallow pills around the age of 6. He only just turned 4(HAPPY BIRTHDAY LOGAN!!)  but it was still worth a shot.  I read about all different kinds of tricks to get young kids to take medicine (hiding it in apple sauce, start with small sprinkles and work your way up, etc.)  I decided to give it a try and see how he did with a "full sized" pill and skipped right to the mini m&ms.  Worked like a charm!!  He tried to chew the first couple of tries, but by pill #3 or 4 he was swallowing them like a pro!  He's been showing off his new skill all night.

Today, I also got questions that I have been waiting for since this all began.  On the way home from school Parker asked "why does Logan go to the doctor all the time?"  I knew this questions was coming but I never really knew how we would answer it. It's come up briefly in the past, but a simple "he needs to get medicine" or "he needs a little extra help" always put an end to that conversation.  Today, Parker wanted to know more.  I have a hard enough time explaining this stuff to some adults, how do you explain it to a 5 year old?

Our conversation went something like this:

Parker: Mommy, why does Logan go to the doctor all the time?
Me: Well, he needs to get extra medicine.
Parker: Why? Is he sick?
Me: No, but he has something in his body that not many other people have.  It's a really big word called "Neurofibromatosis"
Parker: What's that?
Me: It's something that makes his body have extra bumps. Sometimes the bumps are on the outside, like the ones his has on his skin, but sometimes they are on the inside and we can't see them.  Logan has some bumps that we can't see on the inside of his head in his brain so he goes to the doctor to get medicine to make those bumps go away.
Parker:  But you can't get medicine inside your head.
Me: No, so they put the medicine in his body somewhere else and it travels inside to his head.
Parker: How do they do that?
Me:  They give him a really big shot that takes about 3 hours to give him all the medicine that he needs.
Parker: How long is that?
Me: 3 hours is as long as 6 tv shows. 
Parker: They just give him a shot and then go away and come back and take it out?
Me:  Well, when they give him the shot, they attach it to a tubie that gives him the medicine and then they come back and take out it when he is all done.
Parker:  Well, I wish I could go with him some time.
Me:  That's really nice, but it really isn't very much fun.
Parker: Why not?
Me: well, it's a lot of waiting and being patient and getting shots.
Parker: If we go early maybe there won't be a lot of people and there won't be a lot of waiting.

If it were only that easy!

Since we are at the end of a cycle, I decided to confirm with the doctors what we are looking at in terms of how long this will be going on.  It's always been a "play it by ear" kind of thing and things have the possibility of changing at the end of each cycle (as we experienced after the first cycle) but the bottom line is that this is a 6 cycle or 72 week treatment plan.  The end of this cycle marks the first 1/3 of chemo potentially being done.  Hopefully we start seeing good results on the MRIs and we can in fact be done with the chemo soon.

1 comment:

  1. My wish for all of you for 2014 is to have Logan showing some good results. I can not believe as a young couple what your family has gone through. You are truly amazing! Logan is one strong little boy. I read every update and pray with heartfelt caring thoughts. My prayers are truly with you. Regards, Kathy Rogers (Kitt's friend)