Friday, June 20, 2014

Busy week

The past week or so has been crazy in our house.  I have been working like crazy to finish up the school year at the 2 school where I do therapy.  This requires a lot of paperwork, documentation, last minute evaluations, meetings and last chance for make-up therapy.   Logan, of course, did his part in making this as difficult as possible.

The first offense was last Friday, when Logan threw up upon arriving at school.  He has been doing this every "off chemo" week for the last 4 treatments. Because these episodes are happening so far removed from infusion (a week or more) it can be assumed that it is not related to the chemo.  So why is he throwing up every other week?  The doctors don't know.  I don't do well with not knowing, so I visit my good friend Google.  Google is the kind of friend that thinks he knows everything and gives you advice that you really don't want to listen to.  He has a tendency to jump to conclusions and get into your head. This is probably even worse than not knowing.  I really try not to take the stuff I read on Google too seriously, but you can't help but read into some of it.  The 2 theories discussed with the doctors are 1. the tumors (or new tumors) are growing causing increase pressure in the brain leading to unexplained vomiting (not totally illogical since we know he has tumors and is very likely to grow more tumors) and 2. hypoglycemia causing early morning vomiting (again, not totally illogical since it only happens in the morning after a long night of not eating). Since Logan is scheduled for an MRI next week, we will be able to confirm/rule out tumor involvement.  Now we wait.

The 2nd offense was Tuesday when Logan had to be picked up from school due to some very aggressive diarrhea.  Diarrhea is a very common side effect of his chemo, so a quick dose of medicine and little diet adjusting and we were good to go.

Wednesday started a string of doctor appointments.  Wednesday he was seen by the cardiologist.  This was to clear him for a change in medication for ADHD.  They completed a thorough assessment including an EKG and ECHO.  Logan did an INCREDIBLE job sitting still for the long ECHO and was cleared as everything looked "fine".  Our adventure at the cardiologist was not over quite yet.  Due to a history of some pretty serious life threatening heart issues in my family, the doctors wanted to be EXTRA sure Logan was clear, so they put him on a 24 hour Holter. My family is no stranger to the holter, but for those of you that don't know, a holter is basically a heart monitor that you wear for usually 24-48 hours.  With it, they are able to assess your hearts electrical functioning within your normal daily routine.  Logan did fine wearing it, although occasionally got tangled up in the wires. 

Thursday was his normal chemo day, but we started out with a trip to see his neuro optomologist first.  A few vision assessments and scans later, Logan was given the 'OK' again and were were off to chemo.  Another "normal" chemo.  They increased some of his pre-meds to try to combat the still increasing nausea.  As I mentioned, much of the discussion with the doctors this round was trying to figure out the unexplained vomiting.  We are also still holding out for talking about the behaviors/medication, but they are trying to get us in with one of the other neurologists that specializes in NF related ADHD behavior problems. Hopefully that will be able to happen soon.

Logan did a great job (duh) and actually slept through his entire infusion (in part I'm sure to the increase in premeds).  He did well most of the evening and again was able to eat very healthy portions of snacks/dinner.  The trouble with that was that when his anti-nausea meds wore off around 2AM, mommy had to clean up those very healthy portions of snacks/dinner.  I can not wait for the day when Logan can manage to get to a receptacle before he starts. 

Tuesday Logan will get another MRI.  As always, I'm on edge and anxiously await these result, even more so this time as we have this random vomiting hanging over our heads. 

To sum it all up, in one week we have seen vomiting and diarrhea, been to/scheduled for 4 different doctor visits and in the end will have been seen by no less than 15 nurses and 7 doctors.  Oh, and I managed to get all my work done. 

Thursday, June 12, 2014


The biggest battle we have had in all Logan's medical issues is, without a doubt, managing behaviors. Logan is predisposed to having issues with ADHD because of his disorder. Now, before I start a war on the opinions of ADHD, I know that there are many opinions on the validity of diagnosing ADHD and even more on the treatment of it.  As someone who works in schools and has a child who struggles with behaviors, I attest that it is a very real problem.  While I do agree that people may jump to that diagnosis very quickly, and medicate as an "easy fix" without trying other interventions, I also believe that there are valid cases that require such interventions for the benefit of the child.

Best attempts at sitting still
I never, in a million years, thought I would say that with as much confidence as I do.  A little background: as a child I struggled in school.  I was diagnosed with ADD and put on medication to help support my education.  I hated it.  It's difficult to explain, but I just didn't feel quite myself while on it.  Once I was old enough to compensate for my weaknesses, I stopped taking it.  I swore I did not want that for my kids.

Then I became a school-based speech therapist.  I began working with kids who were the textbook examples of what ADHD looks like.  These kids can't control themselves or their actions.  I know it sounds silly to say.  Who can't control their own actions?  It's easy, right?  Well, you don't believe it until you really see it. It is truly indescribable and sad to see them battling so much within themselves.

What he can do in about 90 seconds
But it's fun to play with the blinds
4AM make-overs (not pictured: Logan and the cat)
Finally Logan came along.  In the last 2 years, Logan has developed hyperactivity and attention based behaviors that have severely impacted his life.  I know he's only 4, and these things are expected of someone his age, but it goes beyond that of a typical pre-schooler.  He truly lacks impulse control and does things that are inappropriate, destructive, or down right dangerous.  He knows right from wrong.  He can tell you the things that he should not do.  But he can not stop himself from doing them.  A highlight of some of his more common and most often repeated actions : pulling the fire alarm at school, drawing on the walls/furniture, drawing on the cat, dancing naked at school, throwing things in the toilet, stealing things (constantly), throwing tantrum, attempting to play with dangerous items (scissors, knives, razors, lighters, etc.), walking/running away in public, running into the street, peeing on himself, pooping on the bathroom floor, general destructive behavior. If left unattended, Logan can destroy a room in about 90 seconds.

In addition to the behaviors, Logan is unable to sit and attend in order to learn new information. He can pick an activity and before he even has a chance to start that activity, he has moved on to another.  This can happen in rapid succession until he has either found the rare object that can hold his attention or he runs out of options.  At school, unless the teacher is sitting with him one-on-one, he can't participate and even then it's a struggle. I have overheard teachers at his school (on multiple occasions) refuse to allow him to be a part of their classroom. As a mother, it breaks my heart.

Finally there is the developing aggression. Yelling, screaming, tantruming, aggressive backtalk, hitting/kicking, crying.  All at the drop of a hat.

Logan started taking a low dose Ritalin a few months ago and for awhile we saw a great change.  Once we played around with the dose, we found that the behaviors decreased and his attention increased.  He was finally able to participate in class activities.  He wasn't initiating destructive behaviors (as much).  He was easily redirect to appropriate behavior.  About a month ago, the medication started to not work as well.  His morning dose continues to give him some benefit for a brief amount of time, but his afternoon dose has no effect.  We started to receive reports of behaviors coming back at school and we certainly saw it for ourselves at home.

 We have spoken at length about finding another option.  Different medication?  Stronger dose? Extended release?  Who knows.  Before we can discuss another plan, Logan has to be cleared by Cardiology.  These medications can cause your heart to race or exacerbate existing heart problems.  Since my family, including myself, has a history of cardiac issues, Logan will require a thorough work-up before they feel comfortable changing he prescription.   Once he is cleared, we will continue to work on a plan to best support Logan.

Thursday, June 5, 2014

Strong boy

Today I thought I'd give a timely report. An update on the actual day of chemo?!?  Unheard of!

Logan and I were joined at chemo today by Momsie (Logan's Grandmother).  It's always nice to have someone else there, so we REALLY appreciate her making the trip down to join us.

We were treated to 2 special events today.  First, Flashes of Hope returned for another photo shoot and Logan enjoyed showing off his bright personality in front of the camera.  Second was a new regular event added to the clinics daily routine, 2PM Happy feet dance party.  All of the patients and nurses joined together in the hall with instruments and smiles to sing and dance an encouraging song and just have fun.  Its amazing how such a small thing can brighten up otherwise sad faces. Song choice could not have been a better fit to encourage these kids that things will get better. (Check out lyrics to today's song here)

Nothing too different medically about this session.  We spent a lot of time talking to the doctors about managing behaviors/ADHD.  This is a topic of a whole other post for another day.  For the purpose of this post, we have started the ball rolling on a couple of things that will hopefully help manage this portion of Logan's condition. 

Logan did great, although I feel like that's a given at this point.  We ALMOST made it out of there being able to uphold our record of not throwing up at infusion, but Logan did have a minor upchuck when we got to the car.  Once we got home and got another dose of anti nausea meds, Logan was ready for his all night feeding frenzy.  Given the limited intake for the day, I don't really blame him.  Starting at around 3 PM Logan ate: 1 yogurt, 2-3 helpings of veggie fries, 2-3 helpings of pirates booty, an apple, a serving of grapes, a salad, piece of garlic toast, about 3 helping of baked ziti, 1/2 dozen strawberries and whatever other food he managed to sneak when no one was looking.  Pretty good for someone who, just moments earlier was looking quite green.

Thankfully the anti nausea meds are able to manage things pretty well although he's testing their limits.  As I'm sure I've stated before, Logan gets just a little bit sicker after every treatment.  This is evident the consistent increase on his use of the anti-nausea meds.  When he started, Logan didn't need any more than his pre-med dose to keep the nausea at bay. Since then, we've had to start giving him extra doses after his treatment up to several days after.  Most recently, a 2nd anti-nausea med was introduced in his pre-meds to double up on power.  Up until today anti-med#2 has done the trick.  Today, even being on 2 concurrent meds, he managed to throw up.  I'm hoping we can continue to hold off the sickness enough for awhile, so we aren't doing any more med-adjusting than we really need to.

After Logan threw up in the car, looking like he was hold back more, he asked, " Mommy, if I throw up, will I still be a strong boy?!?" As if a moment of weakness, that he has no control over, would make him any less of a fighter. All I could do is reassure him that he will ALWAYS be a strong boy and that he is the strongest boy I know.

Tuesday, June 3, 2014

More nausea.

I know I'm a little behind with updates from Logan's previous chemo session, as we are about to have his next.  I have been super busy with work because it's the end of the school year and not only do I have to catch up on everything that I have missed, the schools decide they need XYand Z done before the last day. I will be a happy camper in about 3 weeks. Nothing like the last month of school to request new evals to be done.

My dad (Dude) came down again for the last session.  I'm not sure who is more tired/naps more on chemo day - Logan or Dude.  Everything was pretty standard.  One thing that stands out was his access.  Seemed they were training a new access nurse and she may not have been on target when sticking the needle in.  It bent, didn't make it all the way in the port and basically had to be taken out and tried again.  Attempt 2 (from an experienced nurse) made it in fine and we were on with the day.  Even through the poking and pulling, Logan did a great job.  He fussed a bit, but who wouldn't.  I wouldn't even classify it as crying.  Amazing!

Additional anti nausea meds held off the vomiting successfully again and he even made it through a yummy dinner.  Trouble came Friday at school when his morning dose of anti-nausea meds wore off.  I'll spare you the smelly chunky details.  Lets just say I picked him up to spend the rest of the day at home trying to get it under control.  The weekend was fine and his nausea has been under control since.

Until this morning.  Upon arriving at school, he began throwing up.  It's strange to have that reaction so late after a treatment, but it is not the first time we have seen it outside of the few days after.  A quick trip home to give a dose of meds, and it was back to school for him.  I know what you are thinking.  "Your son is throwing up and you send him to school anyway?!  how cruel!!"  Well, when I told Logan we had to go home to get meds, he fell out on the floor and cried "no, I feel better!!! I don't want to go home!"  Pretty sure he wouldn't have it any other way! He loves school and LOVES his teachers. 

The side effects are definitely building in his system and we are seeing more of a reaction for longer periods.  Thankfully we are able to keep it pretty well under control and have some good "off" time in between.  We have a couple days left before it's time to med up and do it all over again.