Friday, April 25, 2014

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. 

Thursday, April 10, 2014

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.

Tuesday, April 1, 2014


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.