Sunday, July 20, 2014


I'm officially done working for the summer although I feel like I am constantly fielding emails, calls, texts with one problem or another.  The rest of the summer is for Logan's appointments and keeping the boys busy and out of trouble, which is much harder than it would seem.  Now that Parker is home from 2 weeks with the grandparents, we've been doing some fun things (trampoline park, movie theater, going to the pool, etc.)  and some not some fun things (getting swarmed by yellow jackets while working in the yard, running errands, doctor appointments, etc.)

This week's chemo was a chance to pick the doctors brains since we haven't actually discussed this new liver issue.  Let me start by saying, Logan is being followed by one of the top neurologists for NF in the country (and probably the world).  You can't read about management of NF brain tumors without seeing his name. He has probably seen it all, which is saying a lot because no two cases of NF are the same.  When asked about his thoughts on Logan's liver mass, the word "stumped" came out of his mouth.  According to him, the liver is an unusual place to develop NF tumors and he has not seen that.  Granted he is a neurologist and not particularly involved in other areas of the body.  I think he is just as curious to see what is going on as we are.  This is not particularly comforting.  Thankfully, being who he is, he has easy access to people who may have the answers.  The next step is an MRI of the abdomen to see if they can determine anything else about this mass.  Should the MRI not provide any insight, a biopsy may be recommended.  The good news is that there are no apparent effects on his liver function.

Big brother looking on
Another point of discussion with the neuro-oncologist, was figuring out when there might be an end to this treatment.  There are a lot of factors at play and a lot of options moving forward.  Next steps will be discussed in more depth in October.

Another bonus this week was the addition, for the first time, of big brother Parker.  He has been very curious about all these doctor's appointments and was very interested in coming and seeing for himself what it is all about.  I prepared him by giving him a rundown of what happens and emphasized that it is not fun. I told him it was a lot of sitting around, waiting and doing things that aren't fun.  I'm pretty sure he was under the impression that it was a fun day full of excitement.  After all, that's how we talk about it around Logan.  He said he understood.  About 30 minutes into a 7 hour day, Parker says "This is boring.  It's a lot of waiting."  You don't say!

Logan did great, but do I really have to say that at this point.  He enjoyed a short visit with the clowns and an even shorter nap.  He got a little sick at the end and got really upset stating "I'm not a strong boy anymore because I threw up." Thankfully we got through 2 days post infusion without any additional sickness.

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