I get asked a lot of questions, and I don't always know how to answer them. Here are some of the most common questions I hear and my best attempts to answer them....
What kind of cancer does Logan have?
He doesn't. Or at least we don't think he does. Tumors associated with NF are typically benign tumors. While there is always a risk of malignant tumors to develop, this is not usually the case for NF tumors. In order to test to see if Logan's tumors are malignant, he would have to go through a dangerous biopsy surgery to remove and test a piece of the tumor. The risks associated with this surgery far outweigh the likelihood of malignancy. For this reason, the doctors are confident in assuming, given no other reason to believe otherwise, that they are benign.
If his tumors are benign, why bother to treat?
Even though his tumors are not cancer, they still pose a great danger to him. The location of the tumors puts Logan at risk for going blind, having seizures, impacting his ability to walk, blocking the drainage of fluid from his brain, etc.
Does he have any other tumors?
The short answer... we don't know. Tumors associated with NF come in different shapes, sizes and locations. They form on nerves, so frankly, they could be anywhere in his body. Logan has a few tumors growing on the surface of his skin, but beyond that, we have had no indication of tumors elsewhere. Typically, doctors will not go looking for NF tumors in the body unless they have reason to believe that they are there. Some people with NF live with tumors throughout their body, without even knowing they are there because they cause no problems. So, until we have reason to believe there might be something else in there and we go tumor hunting, we just don't know.
How much time do you spend at the hospital?
Our current chemo plan has Logan going in every other week (way better than the previous every week schedule). These appointments average about 7 hours. In addition, he has additional appointments with the neuro-opthamologist every 3 months and an MRI every 3 months. If nothing else goes wrong, we get to enjoy the rest of our time at home and school. Should Logan get a fever or need to go to the emergency room for any particular reason, we are back for two more days (per occurrence) at around 4 hours each.
What can I do to help?
This is probably the questions I hear the most. I have always been so touched by the amazing outpouring of support we have seen and I have been very grateful for everything we have received. The truth is, there is a lot you can do to help, but it does not need to be directed toward us or Logan. There are a lot of kids in much worse circumstances than Logan and they need support too. Not just kids with medical issues. Kids who don't have homes, clothes, foods. It doesn't matter what it is. I would love to say everyone should support NF research (check out links to the right if you are interested in supporting NF research), but really, just support something. Find a cause that touches you, and make a difference. Donate clothes, toys, food. Call your local children's hospital and ask about volunteering some time to play with kids who are probably scared and need a new friend. Don't have time, give money to a good cause. Be it Autism, cancer, diabetes, NF or any of the other innumerable causes. Just do something.
How do you do it?
Ok, I lied, this is the one I hear the most. I can't really take credit for "doing" anything. Logan is the one who "does" it all. I'm sure if he could type (or spell anything other than "C-A-T" or have the attention span long enough to sit and write this stuff) he would be the one sharing his story. He does all the hard stuff. He gets the shots, he gets sick, he feels the fear. The amazing thing about Logan is that I don't know how he does it. He just does. Believe me, if I could "do it" for him, I would in a heartbeat, but I can't. I'll have to settle for sitting beside him and watching in amazement.
Have a question? I'll do my best to answer it.