Another cycle done

Today marks the end of another cycle of chemo for Logan.  While he doesn't get an extra break between cycles now, it is marked with another MRI to see what effect, if any, the chemo has had on his tumors.  This will happen next week and we likely won't discuss the results until the following week at his usual appointment. Just to recap, The first cycle of chemo (Carboplatin/Vincristine) ended with additional tumor growth.  The second cycle (Avastin/Irinotican) ended with all tumors shrinking.  We are obviously hoping for additional positive results.  

 

Today's session was like many others.  We were treated to a show in the waiting room which Logan REALLY enjoyed dressing up and participating in.  As usual, the pharmacy took quite a while getting his chemo ready so he had lots of quality time in the art room.  His infusion ran as usual, ending in nausea and the new norm, vomiting (which started about 15 seconds after the below pictures were taken)

Nauseous Logan 

Nauseous Logan trying to smile

Overall, Logan has done really well this cycle.  He continued to gain weight and skyrocket in height.  He does an amazing job with port accesses and, if I recall correctly, only had two ER visits this cycle.  The newest effects, vomiting during/after his infusion, is something we will have to keep in check moving forward.  

Current Cycle- back on track and looking healthy

Last Cycle- underweight w/drooping eye

Nausea and Central Lines

Ipad while waiting for doctors

Another standard week at chemo.  Everything checked out fine. Minor concerns this week: 3 bloody noses since his last session (Platelet count came back fine), high heart rate during vitals check (came down later), nausea/vomiting at his last session (increased Benadryl premed). 

After decreasing his Benadryl pre-med last week resulted in some sickness issues, we decided to increase it again this week, however, not back to the original amount.  It helped and he got through the entire infusion without throwing up.  It was time to de-access him and the nurse did one final saline flush.  This is when he lost it.  It was not nearly as bad as the previous session but he was sick and looked pretty ill for several hours after.  Two theories on this illness: 1. the change in benadryl is interfering with his tolerance, 2. the chemo is building in his system and causing more side effects. My personal opinion (and hope) is that it is due to the change in Benadryl.  I guess we'll figure that out in the weeks to come. 

Sometimes in the clinic, whether you are trying to or not, you overhear details of the other kids treatment. Yesterday, my heart went out to the little girl we shared a pod with. This little girl, probably no more than 2 years old, was in clinic for treatment of Sickel Cell. She has a central line for easy access for medication and blood draws (similar to Logan's port but with the tube coming out of the chest.)  The doctors noticed that the cuff on the central line (the portion inside the body that holds the tube in place) was coming out and after about an hour of I can only assume pulling, pushing and otherwise fiddling with the tube, they decided that they needed to do surgery to replace the tube.  This meant that this little baby was being admitted overnight for IV medication in preparation for another surgery tomorrow to replace her central line. This is something that we are told in the beginning is a possibility. Lines get crimped, twisted, disconnected, infected, any number of things that could cause any one of these kids (including Logan) to have to get an additional surgery to correct the problem.  While it's not a MAJOR surgery in the grand scheme of things, it's just one more thing that these kids shouldn't have to go through at such an early and innocent age.  I'm praying for her this morning that everything goes well and for her parents to get some relief soon.

Resting at home after another long day

Nausea

Another Thursday, another chemo.  Arrival at the clinic was met with toys.  Lots of toys.  Yet again, a family organized a toy drive for the chemo kids and each kid coming through the clinic was able to pick a new toy.  Logan of course chose the loud robot/alien voice changer.  Great!

Most of the session was standard.  Checked out with the doctors, blood counts were ok, killed some downtime doing tricycle laps around the clinic, slept through a good portion of the infusion.  Typically toward the end of the infusion, Logan starts looking a little nauseous.  A couple of times we have seen him heave a little, but he has never actually thrown up during his infusion.  That is until today.  Logan spent the last 30 minutes or so of his infusion throwing up.  In true Logan spirit, he was not really upset by it and managed to get through the rest of the infusion without much of a fuss just a lot of throwing up.

Before leaving, they wanted to get the vomiting under control, so a dose of an additional anti-nausea medicine was given and it really seemed to help.  This medication has some pretty strong effects and some pretty strong side effects.  Within minutes, Logan was slurring his speech, falling over and pretty much just completely inebriated. Well into the evening he is stumbling around bumping into walls. We took a couple hours off eating (I may have sneaked a cupcake when he wasn't looking.. shhh) and eased back in with some easy to stomach options and a light dinner.

My theory behind the change in nausea level:  Logan gets benadryl before his infusion every session to prevent a common allergic reaction to the drugs.  Typically Logan has been knocked out cold and sleeps for the entire infusion session.  The last few weeks Logan has not actually fallen asleep and so we have seen the full effects of the Benadryl.  Logan enters a deep daze and is completely unresponsive during this time.  His color changes and his lips turn white.  He has crying fits but is unresponsive and unable to be comforted.  Frankly, it is scary to watch.  After talking to the doctors about it, we decided to reduce the amount of Benadryl in his pre-med.  In addition to preventing allergic reactions, Benadryl acts as an anti nausea drug.  I think without this additional precaution, Logan just couldn't handle it.  Back to the drawing board.

The only other thing we have seen this week was a bloody nose Sunday night.  It's likely to be a "normal" nosebleed as there are a lot of factors against him right now, cold weather, the need to constantly have his finger in his nose,etc.  But seeing as how it is a common side effect of his chemo, I'll definitely be keeping it in the back of my mind.  Neither of our boys have ever had nose bleeds before so it is a little out of the ordinary for us.

Logan has 2 more session before his next MRI.  I can't believe how quickly this cycle has gone by.  Hoping for a better next session and continued great results.

Snowy chemo

It's been a little while since I've updated so I am long over due.  I actually have a few posts started and saved but never posted, so I haven't forgotten about you completely.  Since the last post we have had 2 more chemo sessions, a weekend in the ER for fever protocol, more trying to setting in on Logan's medication, a few more snow days and a revolving door of family and work being done in our house.  Lets see if I can update you on it all.

ER- A couple weeks back, Logan was on/off with a low grade fever over the course of a week.  It would come and go quickly so we didn't feel the need to do anything about it.  Day by day is peaked higher and higher and was starting to disrupt his sleep and he was clearly uncomfortable.  We were granted some leniency in his fever protocol and our new action point was 101.5, so when that hit, it was time to call in.  Still seems so weird to rush off to the ER for such a low fever, but they were nice enough to extend an extra .5 degrees to us, I guess we should probably follow their orders.

The first night SUCKED!  Definitely in the Top 2 worst port accesses! Not surprising, it was the same nurse for both terrible accesses.  I guess we know who to avoid now.  It took 2 different nurses and multiple attempts to get his access in.  After that, it was fine.  As we were leaving the ER the first night, Logan decided that "that was a fun doctor!  Super fast!"  Thank God for his endlessly positive outlook on everything! Night 2 was a piece of cake.  A GREAT port access and fast procedures!

Medication- Since starting Logan on Ritalin, we're trying to figure out 1. is it making any difference, 2. is the benefit worth it, 3. what is the appropriate dose.  It definitely is not a magic fix and anyone who thinks that probably could use some serious help themselves.  Since starting we have seen some improvement in his attention/behavior while he is on it, but he continues to struggle throughout the day. He continues to exhibit impulsive behaviors (pulling the fire alarm more than once at school), aggressive/non-compliant behaviors and difficulty with attention.  Before you judge me, I know, he's 4.  What 4 year old doesn't have problems with these things?  Spend a week with Logan and you'll see.  We recently got a small change to his dose, so we'll be watching to see what. if any effect it has.

House- We recently had a leak in our powder room wall which triggered a long overdue bathroom redo.  For whatever reason, the previous owner of our home, decided that carpet in the bathroom was a good idea.  For about 5 years, we had been planning on redoing that room, although the time, energy, money and motivation just wasn't there.  Leave it to a soggy, stinky carpet to get the ball rolling.  With some new found extra time on his hands and a taste for painfully annoying renovation, my dad came down for a week to help and, lets face it, completely manage the work.  What seemed like a simple job, turned out to be a long and exhausting endeavor.  We are so incredibly grateful for all the time and work (and money) that he put into getting our house back in shape.  We are still waiting for the vanity top and plumber to come back and hook it back up.  I can't wait!

Chemo- We've had 2 chemo treatments since that last update, and nothing too noteworthy to report.  In fact, I can't even really remember the previous chemo session at all.  I vaguely recall Logan not napping at all, for the first time since introducing Benadryl to his meds.

The most recent session, last week, I was joined by my mother-in-law.  We had quite a bit of snow Wednesday night and I was unsure if we would make the trip Thursday morning.  I was up most of the night, wondering, debating, watching the weather.  Around 5AM we starting watching the roads to see if they were even passable.  There were several inches of snow, although at the time it was pretty light/dry snow. About that time, it had just starting sleeting.  I watched a couple of cars leave the neighborhood without difficulty and the plow had just come through, so I decided to give it a try.  If we could make it out of the neighborhood, that would probably be the worst of it.  It was a slow drive, but given the lack of traffic, we still made it in the same amount of time.  We weren't the only ones in the clinic that morning, but it certainly wasn't crowded.

Logan did his usual awesome job and even got a decent nap in.  Best part of the day, we were welcomed home by a shoveled sidewalk and a big friendly snow man in the front yard.  Glad we were able to travel safely and that Parker was able to enjoy the snow at home with dad.

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. 

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.

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.