|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|
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".