Here We Go Again!

This week we re-start chemotherapy.  A three week break was nice.  The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair.  She has mouth sores, and body aches.  Her skin is blotchy and pale.

I think these side affects bother ME, more than they bother Bailey.  I see my daughter transforming, it's scary.  But, she seems almost unaware of all that is happening...All that could  happen.  Maybe that's a good thing, I don't know.

The whole world of chemotherapy, is a strange one.  Anyone who has experienced any part of this world, knows what  I'm talking about.

It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops.  Your world morphs into something unrecognizable.

Life becomes all about numbers, and needles.  Good days and bad days.  High fevers and hospital stays.

Dealing with all this "stuff" is hard for even the strongest spirit.  Sometimes, I silently ask God what the point of all of this is.  Why Bailey?  Why now?  And when will we finally see the light at the end of the tunnel?

It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over.  How can I keep up?  How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?

I guess the answer is to just simply do it....and as always THRIVE ON!

Education and Neurofibromatosis

As many as 65% of children living with Neurofibromatosis have some type of learning disability. Preparing your child and the teacher is assential for a successful school year.

Aside from the physcial aspects of Neurofibromatosis, it is up to the parents to advocate for their child, in order for them to get the most out of their education.

Out of my six children, three require special services and an IEP's (Individual Education Plan) It can be quite overwhelming when school time rolls around....The meetings and planning take a lot of time, however they are vital.

The first thing that is important for the child's teacher(s) to understand is what Neurofibromatosis is, and how it affects your child. The child's specific disabilities must be addressed and acknowledged.

For our family, the three children who have been diagnosed with Neurofibromatosis have very different disabilities. What works for my 12 yr old son, does not work with my 7 yr old daughter and vice versa. My 14 yr old requires a lot to motivate her, while my 7 yr old is energized and willing to do what is asked of her.

Understanding Neurofibromatosis, can help in a major way in understanding how each child with this disorder learns in the classroom, and how you as a parent play a very important role in their success.

The Children's Tumor Foundation has created a wonderful resource for parents who have children with NF. I have printed out several copies and given this to ALL of my children's teachers. Not only was it appreciated, it has helped the teacher a get much needed understanding of this disorder. Please feel free to take a look, and print this out, for your own records.

Good Luck to ALL the families as their children go back school!