September 25th 2008

We met with Dr Khakoo today who went over our options, which aren’t much. Cristian has been progressively getting worse since his first surgery. I cannot understand this. The doctors said the second surgery was successful and the fluids are draining, so why is Cristian getting progressively worst instead of better. My son cannot walk!!! His speech is getting worst and so are his eyes and the entire right side of his body. A while back I wrote about 2 drugs that I was excited about Panitumumab and Nimotuzumab. Both these drugs are not available right now and we cannot wait. Dr. Dunkle once told me that he would try to get Cristian on one of these 2 drugs even though Cristian wasn’t eligable since this wouldn’t be Cristian’s first trial drug. We will check with Dr. Dunkle on this possibility. In the mean time Dr. Khakoo says we can stick with Avastin and Irotecan which is what he was on before the surgery. Cristian only had small tumor growth while on Avastin and Irotecan. Cristian will have another MRI Friday in order for us to see where we are at with his tumor. Jenelle text me that at 10:30pm that Cristian started to walk on his own. The walking is like it was a few days ago, really bad, but at least he is walking. We have been giving Cristian 2 natural supplements named Trans Factor and Boswelia. Boswelia is a natural steroid and Jenelle wants to give Cristian 6 a day instead of 4 to see if that will help. Some parents give their children 8 a day. This is a natural product and won’t hurt Cristian. Cristian’s MRI is at 9:30am Friday. Please join us in prayer and that whatever is causing our little boy to have these complications will be found in the MRI. Thank you for you support! Cristian’s babysitter is doing a walk for Cristian. Visit the link to find out more information Have a chance walk – Donations

John “Gungie” Rivera
Forever Cristian’s Daddy