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.

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. 

NF Awareness

Bracelets Parker helped make in NF awareness colors

Last week was an "off" week for chemo but we remained very busy. This month, being NF awareness month, my mother-in-law (Momsie - as the boys know her) wanted to do a special event at her work to raise awareness for Neurofibromatosis as well as raise funds for the Children's Tumor Foundation, an organization which is "dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis".  Visit their website to www.ctf.org for more information.

Meeting the Mayor

Momsie works for the Township of wonderful Toms River, NJ. Friday we set out to visit many of the township departments to collect donations and share a bit of Logan's story.  The boys had a great time handing out stickers and lollipops and meeting so many wonderful and generous people.

While we were there, despite his busy schedule (which included dealing with an overnight fire across the street from town hall) Mayor Thomas F. Kelaher took time to meet with us and hear a bit about what Logan has been going through.  The boys even managed to persuade him to to give them some trinkets off his desk.  Leave it for Logan to "steal" from the mayor.  We appreciate Mayor Kelaher taking time to visit with us and hear a little about NF.

Our collection tour also included a stop at the local police department.  Not only did they contribute to the cause, they gave the boys a private tour of the facility.  Highlights of the tour for the boys included banging the gavel on the judge's stand, visiting the jail cells and sitting in and turning on the siren of a police car.

Locked up

Order in the court!

Logan's best "I just got arrested" face

 All in all it was a great day to share information about NF and raise money to help support research and resources for families effected by NF.  I want to thank everyone that we met and contributed so generously to our cause.  A special Thank You to Mayor Kelaher, the Toms River Police department and Momsie. 

Nurses

Working in schools, I've heard a lot this week about "Teacher Appreciation".  After all, being "appreciated" one week a year totally makes up for all the hours, effort and dedication teachers put into their work, right? While I value and appreciate all the teachers I work with, as well as my children's teachers everyday, this week is also earmarked as a week to appreciate another very important and hard working group of people: Nurses.

When we started this medical journey with Logan, one thing became very clear. The nurses make all the difference. Sure, the doctors are the ones diagnosing, treating, monitoring, and basically calling all the shots. Don't get me wrong, we love our doctors. They are caring, responsive, entertaining and their job is clearly vital. But it's the nurses that are on the front lines.

iPad time in the art room

They are the ones carrying out the orders. They are the ones who stick these kids with needles. They are the ones giving them their meds. They are the ones caring for them as they get sick. These, among so many other things, are the duties of a good nurse. 

We are blessed to have not only good nurses, but great ones. Great nurses tell you, every time they see you, how much they love your cool Spider-Man shoes. They let you help and be a part of your medical treatment. They let you make decisions that are just as important as the doctor's, like if you want a spongebob sticker or a Spider-Man one (even though they know it's Spider-Man you are after).  They bring extra stickers because they know you're going to want one for your brother. They ask you questions about your brother, your cat, your school, because to them you are more than a patient. They ease your fears and make you feel strong. They reassure you that you are doing a great job. 

These are great nurses. These are the people that I am thankful for, not only this week, but every time we set foot in the clinic. These are the people that make this experience just a little less scary and a little but more like home. 

This weeks visit was a solo trip for me. Ryan wasn't feeling well and taking germs to an oncology clinic is just plain wrong. Even though Logan had his medicine in the morning, he was definitely more active than usual. Enough so that the doctors noted it and asked if the Ritalin was working. There was a good amount of screaming and yelling and crying and it had nothing to do with the needles or medicine. 

Going for a walk

We also discussed a mild concern of mine for Logan's occasional racing heart and deep breathing. Normally it wouldn't bother me, but given a family history (including my own) of heart issues, I thought it was worth mentioning. They sent us for an EKG. It was a great way to kill time while we waited for the pharmacy. The EKG looked fine. This will be something that we will keep our eyes on. 

The pharmacy was a record slow today. About a 2.5 hour wait for his medicine today. Thank God for the art room and very hard working art therapists!!

Pretty normal infusion today, with the one very exciting change that LOGAN DIDN'T THROWUP!!! A little extra pre dose halfway through his infusion seemed to do the trick. This is the first time in over 2 months that Logan has gotten through his infusion without getting sick. Hopefully this plan continues to work and  this will help Logan's recently decreasing outlook on his doctor visits. 

A long 2 weeks

The last two weeks had some ups and downs (more downs than ups.)

Up- I had a week off work.  (I work in schools so I get "built-in" vacation when the schools have breaks.)

Down- I spent most of that week cleaning up vomit and tending to a sick Logan and our original plans to spend that week visiting family for Easter had to be abandoned.

Up- We had a great time spending Easter with great friends.

Down- Not only did Logan go through 2 rounds of a stomach bug, as well as his usual chemo induced sickness, he experienced some random episodes of unexplained pain. 

Now, lets break it down.  Prior to Logan's last infusion, he had a "stomach bug".  As you may recall, he spent a couple of days throwing up and recovered just in time for his usual infusion, which triggered his next episodes of sickness.  Logan recovered from his chemo sickness just in time to get round 2 of the "stomach bug".  A couple more days of throwing up, and he finally (fingers crossed) got it out of his system.

The problem we face any time Logan gets sick, is figuring out what is related to the chemo and what is "normal" sickness.  Looking back it's pretty easy to distinguish what was "chemo vomiting" and what was "stomach bug" but in the moment, it's always a question on my mind.  My best solution is to give all the info to the doctors and let them decide what is important. 

Because Logan spent so much time throwing up and not eating (he was eating little to no food for 2 weeks straight), he lost a significant amount of weight, about 5 lbs.  While dropping 5 lbs would make no difference in my continuously increasing weight, for Logan's little body, it's a concern.  He was able to gain back some of his lost weight by this weeks infusion, but the doctors still noted the loss and gave their orders to get his weight back up.


The other events of the week revolved around some random episodes of pain.  Logan woke up screaming one night at 2AM about his cheek hurting.  I checked his cheek, inside and out, mouth, nose, ear (for infection) and I saw nothing to explain this pain. I attempted to ease the pain with a cool wash clothes, but that attempt was met with more screaming. I attempted to take his temperature, but just placing the thermometer in his mouth caused more screaming.  This went on for about 30 minutes before he settled back down and went black to sleep.  Two days later it happened again during dinner, only this time it was his nose.  While eating, he dropped his food, started screaming and grabbed his nose.  Thankfully this episode only last a couple of minutes. 

Confused and concerned, of course I head to the internet.  I try not to read too much into internet diagnoses, after all it is best to leave it to the professionals, but I can't help but do my own research.  There has to be some merit in it since it is what lead us to finding out that Logan even had NF.  I found some information that may be relevant, but I'm not trying to jump to conclusions.  After discussing this with the doctors, we don't really have any answers.  They are stumped.  While they would have expected this reaction from his first drug combo, his current medication is not known to cause these effects.  We will just wait and see if it happens again.

Smiling through the nausea

This weeks chemo appointment  was pretty standard.  My dad came down and took Ryan's place this week.  Because Logan has been getting sick from his treatments, it is starting to effect his overall demeanor at his appointments.  He has figured out that when he comes to the doctor, they do things to him that hurt and make him not feel good.  It is definitely not "fun" for him anymore.  This week, the pharmacy took longer than usual getting his meds ready, but this was really a blessing.  This gave Logan extra time to play in the art room and relax before it was time to get sick.  Logan has been able to tolerate about 2 hours of infusion before getting sick, but this week, just walking into the pod turned him green.  While it didn't actually start throwing up until about 2 hours in, he definitely had it on his mind from the start.

Prior to leaving, they gave Logan an extra dose of anti-nausea meds, which really seemed to make a difference.  Not only did he stop throwing up, he was talking about food non-stop and actually asking to eat, which is something that we have not seen too much of the last couple of weeks.  Once home, he ate, and tolerated,  a few snacks and a highly desired dinner.  He was even very upbeat and active, which is something that I rarely have seen after his chemo lately. 

The only other blip on the chemo radar was a rash that developed at the end of his infusion. These meds can cause allergic reaction and this is why they pre-med with benadryl.  When the nurse went to de-access him, we noticed a rash on his chest.  She called the doctor in to see it, but as quickly as it took for him to get there, it was gone.  This phantom rash is something that I hope is not another developing feature of his treatment, but I will definitely be keeping on eye open for in the future.

I'm hoping our next 2 weeks are uneventful and Logan can get a much needed reprieve from everything he has faced the last couple of weeks. 

Stomach flu, MRI results and a new cycle

This week has been a long one.  Partial because we have been waiting to review Logan's MRI results and partially because we have been subject to a stomach flu throughout our household.

Logan had been acting off most of the weekend.  He wasn't really eating much and he just looked ill.  Sunday night it all began to make sense.  While sitting down at the dinner table, Logan began throwing up.  After he had stopped, I told him we would skip dinner and go sit down on the couch and watch a movie.  He insisted that he felt better and wanted to eat his dinner.  I didn't buy it and I'm glad I didn't.  He continued throwing up on and off till about 2AM when his system was finally empty.  I felt like it would be unusual for Logan to get ill from chemo randomly in the middle of an "off" week, so I had to assume a stomach flu.  On the one hand, a stomach flu would mean that the chemo wasn't effecting Logan, Good news.  On the other hand, it would mean that the rest of us were likely to succumb to the same fate, bad news.

A few hours later, when Ryan began throwing up, and then Parker was getting sick too, it was confirmed.  It was not the chemo making Logan sick.  Yay!!!??? ... right?  Somehow, I managed to avoid a similar fate.  Someone has to stay healthy right?  Who else is going to make a run to the store for Gatorade, make chicken rice soup or do 5 loads of vomit soaked laundry? 

After 24 hours on a limited diet and plenty of rest, everyone seems to be on the mend and life resumes as usual.

Last Monday Logan had his 7th MRI to evaluate any changes the chemo has had on his tumors.  I got a brief update from the neuro-oncology department that there were no significant changes on Logan's new MRI.  It was stable. This was enough to tide me over until our next appointment where we would get a chance to review it more in depth.  Thursday, we finally got to sit down and see it with our own eyes (not that we really know what we are looking at.)  Basically, the tumors didn't grow, they didn't shrink.  .

I have mixed feeling about this result.  My ideal outcome of course would be for the tumors to continue to shrink.  Don't get me wrong, Stable is good news.  It is not uncommon for tumors to be unaffected by treatment (as we experienced after the first round of chemo) or for them to stop responding to the chemo and continue to grow.  As long as they are not growing, I suppose I have to be satisfied. 

In addition to reviewing the MRI results and starting a new cycle, Logan was evaluated by his neuro-opthamologist. He passed his vision tests and even got to do some new exciting tests.  One of these was some kind of retinal scan.  Now, I can hold his head still till my arms fall off, but getting a 4 year old to keep his eyes still was a bit of a challenge.  He did probably the best he could.  Everything checked out with the neuro-opthamologist.  Next appointment in 3 months.

The final battle we had was dealing with the nausea.  After several weeks of ill results, the doctors decided to try a different anti-nausea drug.  This switch seemed to do the job, but only by a slim margin.  I had an entirely different ending to this paragraph and typed up and ready to go, but that didn't last.  Logan lasted through the entire session without throwing up, no matter how much he looked like he was going to.  We got home and through 1 viewing of his favorite Toy Story and then he lost it.  The change may have lessened and postponed the effects, but did not succeed in stopping it altogether.

Toward the beginning of his infusion, Logan made a plea, "I don't want to do this today".  I can't blame him, afterall, he just got over several days of feeling ill.  I can't even imagine what his little body is going through.  All I could do was encourage him to do his best and that in a few short hours he would be done and home to do whatever he wanted to.  What really struck me about his plea was the "not today" mentality.  He didn't cry about having to go through it, as I think most kids should, but instead it was as if he was saying "I know have to do it, but just give me a break."  I wish I could.

MRI 7

Today was MRI #7 which means we were out bright and early to get to the hospital. (Leaving the house at 5:30 AM in case you were wondering what classifies as  "bright and early"). There were two things I really wasn't looking forward to about the day.

Scared Silly

Dilated Eyes

First of all, because Logan has to be sedated to get MRIs, he is not allowed any food or drink after a certain point. This means, no taking his pills in the morning. (Plus, I don't know if there is any contra-indication with the Ritalin and sedation drugs.)  Seems silly to worry about managing him without medication since we did for years, but it was definitely a concern, especially having to get up so early and not being able to eat/drink.  Part of me was curious to see how he would do without it.  To see if there was really a difference and if the medication was really necessary. This is a question I always come back to, because the last thing I wanted to do was to medicate him. After spending the morning with him unmedicated, I can say that the Ritalin DOES make a difference and I can confirm the merits of putting him on it (until I start questioning it again in about a month).

The second fear of my day was the moment prior to sedation. I knew I would survive the 60 minute wait till the MRI. It was the 60 seconds right before sedation that was going to be difficult. Knowing that Logan's fears start as soon as he sees the sedation room, I tried to be proactive in preventing this. We started talking about it the night before and came up with some ideas to get through it. Instead of crying, Logan's plan was that he was going to go into the room and sing Twinkle Twinkle Little Star for all the doctors. This worked amazingly well. Walking down the hall, one hand holding mine, the other the nurse's, Logan sang Twinkle the whole way into the room and up onto the bed. 

It was at this moment that Logan realized what was going to happen. Trying to get up off the bed, "I want to go for a walk mommy! I REALLY want to go for a walk!!"  What else can you do at that point than to just rip off the metaphorical bandaid?  With the mask on, he was off to sleep in a matter of seconds. Any longer and I would have been crying right along with him.

Overall, his MRI day was a good one. With lots of extra energy, Logan was lucky to have another little girl, same age, there to play with while we waited. The two seemed to to be instant best friends.  Given the emotional state of her mother, I would guess that this was her first MRI.  I wanted to tell her it gets easier, but I suppose I would have to convince myself of that first.

Now, we wait to hear from the doctors or harass them until they give us some answers.