First post

I guess I should back up...... At some point towards the end of 2002, we noticed that Shaylee's left eye was protruding a bit more then her right eye. Beings as she'd be diagniosed with Neurofirbromatosis when she was about 6months old we knew we needed to have her seen right away. She was due for her check up anyway, so we mentioned it to the doctor, who commented that they hadn't noticed it - until we said something. Appointments were made with the pediatric opthimologist and for cranial MRI focusing on the orbits (that means they wanted to look at her head, especially the eyes).

The MRI was in December. December 31st about 2:30 pm we got the call from the doctor. There was a tumor. It completely surrounded the left optic nerve (the nerve that sends the signals to the brain), involving the chiasm (where the right and left nerve cross as they enter the brain) and "looks like it might be involving the right optic nerve as well". It was all I could do to finish the phone call. But you know what? God was taking care of us even then, he'd placed special people around us. Our regular pediatrician was out on maternity leave, and the boys old pediatrician who'd retired was covering. So Dr B was the one we'd seen and who called with the results of the MRI. His neice has NF, so he KNOWS first hand what was involved. He called and schedualed all the appoitnments we needed himself, so we wouldnt' have to deal with things. Personally, I think Dr B was an angel placed by God to help us through those first terrifying moments and days.

What a way to start a new year, doctors appointments with doctors who had scary titles such as "oncologist". We had our first meeting with the doctors up at the clinic. Again amazing people. They showed us the MRI films and explained what they showed, what they'd mean for Shaylee. After talking with them, it was decided we'd "watch and wait" for a while. Based on the opthimologists exam they didn't think it was affecting her eye sight at that point, and they'd prefer to wait a bit, to see if the tumor was growing. We'd have a repeat MRI in two months, and then review. ....

Two months later, the tumor has grown a bit, but we'll watch and wait abit more.....repeat.

Nine months after that, the tumor continues to grow - but now the opthimologist feels it IS impacting her vision and the decision is made to start chemo. I honestly don't know the words to tell you the fear of that. The uncertainty...IS it the right choice?? Do we have the right to choose something that could, downline give her secondary cancer? Something that could cause her to have fertility problems? Not to mention a host of other possible side effects. But what if we choose NOT to? Minimum, she'll loose vision in her left eye (questionable even then what quality of vision she had), possibly loose vision in both eyes, and if not treated who KNOWS where else in her brain this tumor will extend to. Surgery is NOT an option because of the location......Chemo is the most logical positive option. Its a version of hell knowing your going to be poisoning your child in effort to save them.

The port for recieving chemo was placed on August 20th. Here is our first posting to the caringbridge site that we created to share with friends and family.

~*~*~*~
Tuesday, August 26, 2003 9:41AM PDT
Well, thoguht this might be slightly easier way to keep in touch with so many of our online friends. Shaylee had the surgery to place the port last wednesday. UGH! Took an hour longer than they'd thought, they had some trouble accessing the vein they'd wanted to use and ended up using the one in her neck instead. She did really really well all things considered. HOWEVER, we will NOT be giving her tylenol w/ codeine again! Oh my word!! YUCK, I do not like how it affects her at all. She was scared of EVERYTHING and having visual "disturbances" (read Seeing things not there) and was angry about everything. It was not fun for anyone. She didn't seem to be in pain really so we stopped taking it and our SWEET Shaylee was back the next day. WHEW!She's healing well. Her bruise is getting better. The steri-strips are starting to curl up, so they'll be off in a matter of days. She's a bit shy about it, doesn't like people looking at it, although she did let me help wash it off last night in her bath. Shaylee continues to amaze me with her spirit and her openess to go see all the doctors etc. She's an amazing child!

~*~*~*~*~