Friday, October 17, 2008

Un-diagnosis, treatment and more...

Today I went to discuss the un-diagnosis and treatment plan with the neuro-oncologist at Sloan.

First off, I have to say, I really like this Dr. He is so kind, talks to you like you are a human being and is to the point but not harsh about things. I really like that he talks to me like I am not an idiot like some Drs do.

Second, I have never been so overloaded with information in my life. It was like a 2 hour long session of fast talking and information gathering and head spinning. I was glad my mom was there so that I could bounce things off of her on the way home. I have about 5 pages of notes so I am going to give you the 'Reader's Digest' version of things. So, here is the upshot. They have no idea what kind of tumor this is. I asked if they could tell if the nodule in the spine or the coating on the spine was the primary tumor and they can't even tell that. Apparently 3-5% of children's central nervous system tumors are unclassifiable but they usually have something in common with each other. Mike's doesn't fall into that category. He is a rarity of rarities it seems. So, after that part of the conversation the Dr said that he feels that since Mike's eye has not gone back to the normal state and that he seems to be favoring his left side when he walks and does things that chemo is the only way to go at the moment. Radiation is out since the tumor is spread out so much over the spine, CSF and brain and surgery is out for the same reason. So, chemo it is. They will use a low dose of chemo once a week for about a year. There will be a combination of 2 medications administered via iv/medi-port every week. Hopefully, God willing, this will all be able to be done on an outpatient basis and barring any issues he will not be an inpatient during the course of treatment. I am waiting for the call from the hospital to let me know the date that they schedule the surgery to put in the port. We have to go back to the hospital on Monday for an audiogram and speech therapy eval and a nutritionist consult. Then we go on Tuesday also for an ophthalmology appointment, physical therapy appointment and occupational therapy appointment. I will keep you all posted on all of those appointments.

The Dr did say that while high-grade malignancy tumors have their obvious issues, low-grade tumors have their issues as well. It seems that the low-grade tumors have a tendency to come back later on in life even after the treatments done now. So it looks like we will have MRIs done every 3 months during treatment and for the next couple of years after treatment is done. Then we will see how things are progressing and do MRIs as often as necessary after that.

So, I guess that's the 'Reader's Digest' version. I need to send a HUGE thank you to my friend Lisa... the appointment today went so much easier with your amazing idea!! I brought of the the gifts and the Dr gave it to him... it was wonderful! I can't ever thank you enough for being so sweet!

And I want to thank you all so much for reading and keeping us in your thoughts and prayers. We appreciate them more than you know! It seems like this is only the beginning of a very long journey for us so please continue to keep those good thoughts and prayers coming.



DysFUNctional Mom said...

Thanks for updating. I'm praying for the best, and for your strength; I can't imagine having to deal with this happening to such a little one.