Caitlyn started her new treatment yesterday. It is a drug that is new to the country only two other children in the US are on it and she is the first at CMH to have it,It is called Nimotuzamab. It is from Germany and Japan. In a study of 40 children in Germany a few of them showed stable or shrinking of the tumor. There is a child in Texas that has been on it for 8 weeks and just had her MRI and it showed stable. The other child is in NY and she has only been on it for 3 weeks so we don't know yet. But Jason, my husband is the one that found this and brought it to our doctors attention who is a great doctor. But why did he not know of this. I guess they see so much and don't get excited over every little trial because they don't often prove to save many lives. However with our persistence of getting this drug our doctor worked very hard with many legal and federal sources to get this drug administered here at Children's.
This was part of our reason for the long wait between drugs. She has not been on anything for 5 weeks now. There was nothing really out there that showed any promise. We are hoping for the best with this one. We are dealing with a lot of symptoms now and I just hope that the drug is able to catch up and stop the progression of this cancer and it's symptoms.
Caitlyn did not attend school this week and has not really been back to school since spring break. The changes that we have seen in her do not make me feel comfortable about leaving her alone. Her balance is way off. Her vision is double. And her personality has really changed more of a digression. I can't really blame her. I can't imagine how it must feel to not be able to walk, seeing double and pressure in your head. I think it would make anyone act a little off.
I thank God every day for her friends and mine for understanding all of this, it is not easy to endure. We have been blessed with so many friends and family that continue to amaze me with ways to make Caitlyn and us feel special and make the most of every moment. Our school and Church has shown so much support and love that it is truly overwhelming.
