Thursday, January 23, 2014

Winning our battle

Things have been a little busy, so updates have not been high on the list of priorities.  In the past week we have gotten a new cat, had 2 snow days from work/school, Ryan has been to the ER twice for treatment of a MRSA infection, Logan has had a low grade fever on and off and we have been doing some coordinating to get our powder room fixed (had to rip up the floor thanks to a leak coming through the wall).  So I hope you will excuse the lack of updates.

Last Thursday I ventured to our usual chemo day solo (see note above re: Ryan with MRSA) with the added bonus of an appointment with the neuro-opthamologist.  Everything was pretty standard.  His eyes checked out ok with a continued slight asymmetry of his pupils.  The neuro-opthamologist was very please that the tumors are in check and no longer appear to be affecting him.  We'll see him again in 3 months.

Oct MRI (No clear pic of Jan MRI)
On to the chemo clinic.  Everything was as it always is.  Logan did a great job, as usual.  With the new addition of Ritatin, we spent some time talking about that and how it is going.  The doctors even noted how much more calm and focused he was.  Although, I'm sure if they saw him when the drugs wore off they would be telling a different story.  That's a whole other post for another day.  Lets just say, it has had it's ups and downs.

During this appointment, we also sat and reviewed the MRI that was done the week before.  Nothing but good news there.  The tumors are responding very favorably to the new chemo and have shrunk quite a bit.  All of the current measurements have decreased several millimeters. Put into perspective, that's about a 20% decrease in size.  GREAT NEWS!

While I love hearing the that tumors are shrinking, what I really wanted to know is what it all means for us.  It's GREAT that they are shrinking, but what's next? Go figure, I get good news, and I want more! One of the neuro-oncologists spent some time with me while Logan was getting his chemo in the pod to discuss this further.  Provided that Logan continues to show improvement with this chemo, he will continue on it for the rest of the year.  It is very likely that the tumors will continue to shrink and hopefully at the end of the year we will be able to stop chemo.  At that point he will continue to be monitored for regrowth of the tumors or even new tumor growth.  How likely is it that he will have tumor regrowth and potentially need to start chemo again?? 80%.  Not exactly what I wanted to hear.  I knew there was a good chance of it happening.  I knew it was a potential outcome. Doesn't make it any easier to hear.  Do I hope he is one of the 20% of patients who only have to go through chemo once?  Absolutely.  Will I be prepared if he is in the 80%?  Of course.  I know how strong he is and that he can do it.  I refuse to live in the fear that this will be his life long battle but am prepared to support him no matter what the outcome. While I don't know what the battle will be a year from now, or two or five or ten, our battle today is shrinking these tumors and this battle we are winning. 

Friday, January 10, 2014

MRI and Results

Sometimes it takes a moment of weakness to remind me just how strong he is. Logan has now had 6 MRI scans. He has become an old pro at all the chemo and doctor stuff, but I forgot just how scary it can be for him.  Tuesday morning's MRI was a not so subtle reminder. That moment before sedation where just rounding the corner and seeing the sedation rooms triggers the terror that we rarely see any more. Thankfully it's only a matter of seconds to get him on the table, gas mask on and drifted off to sleep. My least favorite part of it all. Although, this was the first time he had the sillies while coming out of the anesthesia so at least I had that to make me giggle.

MRI @ 2 years old
MRI @ 3 years old

MRI @ 2.5 years old
Now that we have reached the end of the 2nd cycle of treatment, it's time to see if it has "worked".  That could mean any number of things.  It could mean all of the tumors have shrunk.  It could mean all of the tumors are "stable" or haven't grown.  It could mean that 1 or more tumors have shrunk but 1 or more have grown or remained stable.  It could be any combination of tumors shrinking or stabilizing. What we don't want to see is tumors continuing to grow.  After the first cycle, we saw 2 tumors stabilized and possibly shrunk slightly, but one tumor grew considerably.  This outcome of course changed our treatment path with hopes of seeing positive change in this second cycle.

MRI @ 3.5 years old
MRI @ 4 years old

MRI @ 3.75 years old
While we won't get a full review of the MRI till his chemo appointment next week, I did get an email from one of his neuro-oncologists to let me know that the MRI "looks good". He said that the 2 main areas of concern (in the optic nerve chiasm and brain stem) have decreased in size and are taking on less contrast.  I'm not entirely sure the extent of the decrease or if there were any other changes, but we will get more info next week.  This is enough information to hold me over in the mean time.  

I would love to get these reports every MRI and have these tumors GONE.  Is that realistic?  Probably not.  Going into chemo treatment you like to think that it's like any other medicine or treatment.  You get a cut, you put a band-aid on it, it gets better. You get sick, you take medicine, you feel better.   You expect to see a natural progression of improvement.  Only tumors don't work that way.  They want to do what they want to do and you have to know how to stop them.  We're in that trial and error phase of trying to figure out how to stop them. I've figured out that I can hope for improvement, but it's not guaranteed. I'll take this news and be thankful for a successful cycle, but know that we still have a long road ahead.
Eyes TRYING to return to normal from dilation.

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.