Wednesday, July 24, 2013

Why we are here

I'm not really sure why I am starting this blog.  It could be for me, to keep my thoughts and events straight as we are about to start a crazy time in our lives.  It could be for my son, to chronicle his battle with brain tumors.  It could be for my family and friends, to keep up to date on what we are doing and how Logan is doing. I love my family and friends and I am thankful for all their support, but I don't know if I can field the phone calls everyday to find out how things are going. It could be for another family battling NF, to reassure or educate them about our experiences.  Whatever the reason, I'm here and I'm writing.  Maybe I will feel like writing, maybe I won't.  I guess we'll find out.

One of the only recent family pictures and it happens to be a "silly face" picture

Who we are and how we got to this point: We are your average family.  Mom, dad, big brother Parker (soon to be 5 years old) and little brother Logan ( 3 1/2 years old).  When Logan was about a year old, I started to notice some things.  I didn't want to be one of "those mothers" who thinks every little thing is a problem.  We rarely went to the doctor for sick visits, we'd just deal with it at home. Logan was just a little behind.  He wasn't hitting his developmental milestones quite on time.  As a speech therapist, I'm familiar with these delays and have seen them in clients and students all the time.  To me, he was just on the late end of the developmental scale.  One day I started to notice large birth marks all over his body.  They were really faint, but once I started looking, I saw more and more (at least 20).  My first thought was that maybe he had some odd skin pigmentation.  No biggie. The more I thought about it, it was time for google (ok, so I THAT mom)  I came to find out that these birthmarks, or "cafe au lait spots" are an indicator for a condition called Neurofibromatosis when there are more than 5 large ones.  Logan has plenty, but I told myself there is no way he has a "condition".  The more I read, the more it sounded like Logan: large head, developmental delays, cafe au lait spots, bumps on the skin.  We were directed to talk to a genetic specialist.  Almost a year after my initial concern (due to the long wait for the specialist, long wait for the test results, etc) Logan was officially diagnosed with NF- type 1. (Click here for more information on NF-1)

Happy and waiting for his most recent MRI
Over the past two years, Logan has gotten 4 MRIs and has been followed by genetic specialists, neurologists and a neuro-opthamologist (some of the best in the country).  From the beginning, Logan's MRIs showed tumors on his optic nerve (Optic Nerve Glioma) and lesions throughout the brain.  Doctors were not too concerned about this beyond some close monitoring. After all, this is totally "normal" for NF. Maybe this was "normal" for the doctors, but no part about this is "normal" for a mother.  Follow-up MRIs showed minimal changes in the tumors and monitoring continued.  Logan's most recent MRI showed drastic growth and change in tumors on and around his optic nerves.  We were told that this degree of change is "troublesome".Even though NF is completely unpredictable, all of the specialist were convinced that, while we could wait another 3 months (later changed to 6-8 weeks), that we would be needing to treat at that time.  It was now the question that I never thought I would have to answer.  Do I put my son on chemotherapy or risk it another few weeks to see what effect the tumors would have on him?  According to the doctors, potential risks that were highlighted were lose of vision, interference with the draining of fluid in the brain (meaning he would need a shunt in his head) and loss of function on his left side (to name a few). The doctors also made it very clear that, should there be any damage or loss of function, it would likely be permanent.  After a lot of thought, discussion and insight from specialist and family, we decided that it was not worth the risk to put off what we would have to endure in a few short weeks anyway. Hardest decision of my life.

What will happen? First, Logan will undergo surgery to implant a port.  This port will be the access point to take blood and administer all of his medication.  He will then start weekly session where they will test his blood to make sure his system is strong enough to receive chemo that day, and then (if his blood count is high enough) he will receive his weekly doses.  This will go on for a year, with some short 2-3 week breaks every couple of months. Follow up MRIs every few weeks will determine if the chemo is "working".  That could mean that the tumors are shrinking or that they just stop growing. In the meantime, Logan could experience a wide array of side effects from the chemo but we won't really know how his body handles it until we have started.  I will try to keep updates as they happen and share the good, the bad and the ugly.  Knowing my son, I'm sure it will be a lot more of "the good".


  1. Oh my Megan. I will pray for Logan everyday. This has to be the hardest decision you & Ryan have ever made. We are here not far away at all. Please call me if you need anything. I cried reading this. I know our children mean the world to us & I can't image hearing this if this was my child. I love you guy's & please know I'm here if you need anything....I'm not that far away & would love to help....even if it's a cup of coffee with a mom who just needs to cry & talk. Aunt Peggy has my number but I will be calling you myself so you have it. All my love, Erin

  2. It was so nice to meet you and the rest of your wonderful family a few weeks ago. Logan was such a sweetheart. I had no idea what you were all facing when we met...I'm sorry to hear of the struggles you've faced and those ahead but I am hopeful that the combination of good treatment and lots of love will work wonders on Logan. You will all be in my thoughts this next year and in the future. xoxo Sarah (the photographer)

  3. hi Megan, i have had Logan and all of his family in my prayers and you all Aunt Deb