Wednesday, August 20, 2014

One Year

Just over a year has passed since we starting the journey on chemotherapy.  It's hard to believe that Logan has been going through this for over a year now. I would love to say that the fear and anxiety has diminished over time, but I'm not sure that's true.  While we know more now than we did a year ago, we still have a lifetime of questions ahead and all we can do it take it one question at a time.  We know he can tolerate the chemo well and live as normal a life as possible.  We don't know how much longer he will have to live like this.  We know the chemo has worked in stabilizing the tumors. We don't know if it will continue to work as effectively.  We have seen the majority of his body scanned and are aware of what is currently growing inside.  We don't know what will grow or how fast.  For now, all we can do is be thankful for his stable health and overall resilience while facing this difficult time.  He is a truly amazing child.

In September, my family will be participating in the Central NJ NF Walk.  The NF Walk is a national fundraising program of the Children's Tumor Foundation that supports NF research, raises awareness, and provides support for individuals with NF and their families.  We have all seen how the viral ALS Ice Bucket Challenge has raised incredible amounts of money and awareness for ALS, a cause that certainly needed support.  If we could accomplish even a small fraction of that as an NF community, we will have been a success.

On September  27th, we will join together as a family and team to walk (or run - good luck Aunt Bee) in support of Logan and all those people and families effected by NF.  We will be joined by other families that are fighting the same battles, have the same fears and are looking for the same answers.  Please consider donating to support our team efforts and this great cause.  Every little bit helps.  If you are a central NJ local, consider joining our team and walk along side of us.  Follow this link for more information and click "Join Team" to join us or scroll down and select your favorite Team Logan member to support (I know who my favorite team member is!)

End of the summer catch-up

I've been a little behind on updating you all as I have been pretty busy. The last month has been filled with some extra appointments and some fun vacation.  I will try my best to remember and fill you in on it all.

When I last left you, we were "stumped" by the mass on Logan's liver.  The doctor's were expecting and hoping that it was just another "normal" NF tumor.  Logan had another MRI on his abdomen to further investigate.   Finally, at Logan's usual chemo appointment that same week we were able to get an answer. After reviewing his MRI and consulting with other specialists, the doctors believe this mass to be a cavernous hemangioma.  I was expecting them to say it was just another "normal" NF related plexiform neurofibroma, so this answer was a bit of a surprise.  I'll save you the trip to  Basically, a hemangioma is a collection of blood vessels that begin to cluster and grow like a tumor.  They are typically very benign "tumors" and cause no problems, although, as with most things there is a risk of complications.  The typical treatment is no treatment at all.  Monitoring for problems is usually sufficient. Occasionally, surgery to remove the mass is recommended.  They have even been known to treat these with Avastin, which Logan is currently getting.  His doctors were slightly concerned over the large size of this hemangioma but have determined that since he appears to be unaffected by it, the "wait and watch" approach would be sufficient.

His usual chemo appointment was pretty unremarkable.  He managed his nausea pretty well.  His sleep, or lack of sleep I should say, was a bit of an issue on Thursday and Friday. Friday morning was a marathon of crying, screaming, tantruming, and whatever else you can think of.  I'm pretty sure he cried/screamed for at least 4 hours straight.  Thankfully that wore him out and a good afternoon nap later, he was back to "normal" (I use that term very loosely).

Fishing with Uncle Bobby
That week we were also able to get in some fun activities. With my dad down to help out, (and major help he was), we were able to entertain the kids with a morning at the trampoline park and an afternoon of fishing.  One thing I've been working on, is getting Logan more active.  He'd be happy to sit around all day and physical activity is usual met with whining and request to go home, go inside, or sit down.  Feels strange to say that he suffers from ADHD, when he is not particularly active, but it's a whole different kind of hyper activity.

The following week brought our highly anticipated appointment with the neurologist that specializes in ADHD associated with NF.  After a lot of discussion, we decided to stop the ritalin and try a non-stimulate drug instead.  This drug effects his behavior in a very different way.  The jury is still out on it's effectiveness.  In addition, we are starting the process to have him evaluated.  This will hopefully give us a better picture of why Logan is doing what he is doing and how we can help him.

After we had all of our appointments out of the way, it was time for some fun.  We were able to get away for a vacation, which is a very rare occasion.  We met the rest our my family in Duck, NC and spent a week in the sun and sand.  It was a great and relaxing time (thanks to my family stepping  in with some extra supervision of my kids.)   I'm so thankful to have been able to get away and just have fun with family.

Once vacation was over it was home to reality.  Back to work for me, back to chemo for Logan and in the next couple of weeks, back to school for the kids.