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.

Chemo Santa

Today's chemo was more or less like the others. The conversation with the doctors revolved around his NONSTOP appetite and the continued behaviors that we see. As far as the appetite goes, the doctors said that could be a good sign that the chemo is working. He said that sometimes, with tumors in the hypothalamus, kids experience decreased appetite so when the tumors shrink, they see an increase again. I guess we will find out in a few weeks when he goes in for his MRI.

The behaviors have been something we have talked about for years now. We put that on the back burner when we started chemo so that we could get him stable on treatment. Now that he is doing well and hopefully getting better, we brought it up again. Behaviors of concern are general inattention, hyperactivity, lack of impulse control, etc. All very common with NF. Basically, we can't take our eyes off of him for a second without him doing something destructive, unsafe or otherwise undesired. The doctors suggested a low dose med similar to Ritalin. I swore I would NEVER medicate my child. As a kid, I was on Ritalin and later Adderall, and I know first hand what that does to you. I didn't want that for my kids. After seeing Logan struggle and know that he really can not control himself, I know that something needs to be done. We have tried everything (and given my job, I like to think I know a thing or two about behavior management), positive reinforcement, negative reinforcements, rewards, punishments.  Nothing seems to work.  I want him to be safe. I want him to be available to learn. I want him to be able to stop and think and make decisions based on what is right, rather than what he thinks first. We are going to give it a try and see if it makes any difference. Hopefully this will help and allow us some flexibility to provide Logan with the independence and learning opportunities that he needs. 

Today was also a great day at the clinic for the kids. When we arrived, we were greeted with a Christmas tree surrounded by probably hundreds of presents. These presents were donated by the family of a former patient (I assume the same one I mentioned months ago that gave out goody bags to all the chemo kids on their deceased daughter's birthday).  All of the kids coming through the clinic got to pick out their own presents. Logan picked a keyboard, or compiano as Logan calls it. In addition, there was a holiday party for the inpatient and outpatient chemo kids with food and cake and more presents and SANTA!!  Logan was so excited to go see Santa, he even woke up from his Benadryl induced nap for it.

All in all it was a great day for Logan at chemo. One more treatment before his next MRI where we will hopefully get some good results.

Hat head and a mouth full of cake

Courage

It's been a little while since my last update and of course that is a great thing.  It means nothing truly eventful happened.  We had a great Thanksgiving with family and a low key few days at home thanks to the snow that kept us all home.

Last Thursday, Logan had another uneventful chemo session. He slept through the whole 3 hour infusion again.  I have to say it again, I love the addition of Benadryl to his treatment!  We spoke to the doctors at length about some long standing issues.

First, Logan has been limping on and off for a while now.  While the first incident was related to an injury, the re-occurrence of the limping, as well as complaints of foot pain without a recent injury, have us all scratching our heads.  He is no longer on the medication that causes nerve damage, but there are still cases of patients experiencing foot and leg pain on his current medications.  Since he has been off the Vincristine, Logan has shown some additional weakness in his left foot.  Since the issue isn't consistent or really interfering with his functioning, we can just wait and watch (the overall theme with NF).  If it really becomes a problem, they will do an MRI to rule out any damage. 

The second issue was the fevers.  We have adhered to the strict fever protocol from the beginning.  When Logan's fever hits 101.0 we call and are always instructed to go to the ER (for 2 days) for IV antibiotics.  While I totally understand the need for the extreme precaution, it is certainly less than desirable.  Logan gets a fever EVERY Friday after his chemo infusions.  We have yet to see a week when Logan does not have a spike in his temperature.  Thankfully, lately the spike in temperature has resolved quickly enough and not gone high enough to require a trip to the ER.  We spoke to the doctors about this and our concern for this being a regular occurrence.  The kid goes through enough with having to get punctured and pumped full of poison for three hours every session, we really hate to have to add addition pain on top of that.  Not to mention that the ER port assesses are TERRIBLE!  Since fevers seem to be a pattern, but Logan's body seems to be able to manage it on it's own, the doctor's have allowed us an addition .5 degree flexibility with the protocol.  Now instead of going to the ER at 101, we don't have to go until his fever hits 101.5.  Win!

Spending so much time at the hospital, you get to know the other kids that are there for treatment.  You see them every week, you learn their stories and you get to care about them and their families.  This week during our 7 hours at the hospital, we got to know a little girl and her father, who have been receiving treatment for some time, but our paths have never before crossed.  This little girl is the same age as Logan and, like Logan, was diagnosed shortly before her 2nd birthday. Other than that, her story is very different. She was diagnosed with an aggressive kind of brain tumor and has been receiving chemotherapy treatment since.  Shortly after her diagnosis, her mother suffered a series of heart attacks that eventually killed her.  Her father remarried and together they raise her, along with her 5 siblings (including one with Autism).  This little girl, knowing and understanding her condition, speaks very frankly about it, and at 4 years old, is comfortable enough saying
that she is going to die, but that it's ok.  While they were there, the father was meeting with a social worker to arrange his daughter's "make a wish".  As if this little girl wasn't brave enough, as if battling cancer, facing death and going through painful treatments, all before her 5th birthday, didn't make her brave enough, her "wish" shows she is braver than most grown men!  Her "wish" was to swim with sharks! 

These kids, that battle with such strength and courage, never fail to amaze me.