We met with Dr.Khakoo and she went over the same options as given to Jenelle on Monday by Dr. Dunkle. We decided to hold off on giving Cristian anything until Tuesday October 7th, which is when we find out if Panitumumab will become available, if Panitumumab doesn’t become available on Tuesday October 7th we will go with Etoposide or Valproic Acid and Derivatives.
Jenelle took Cristian to see Dr.Dunkle and discuss the options that are available. The options are Etoposide or Valproic Acid and Derivatives. Etoposide is a chemotherapy drug and Valproic Acid and Dervatives is a medicine that is used to prevent or treat seizures.
Cristian slept a lot. He has been sleeping more than usual. His friend KC came to visit him. They played with Cristian’s Thomas battery operated trains and watched tv. I took Cristian home in the evening. Cristian is still not himself.
Today has been one of the scariest days in my life thus far. I picked up Cristian this afternoon and once he was in the car he told me he had a bad headache and was dizzy. He said he informed Jenelle when he woke up.
Today Cristian had the MRI. The MRI isn’t showing Tumor growth so Dr Dunkle thinks there must be something happening internally. We are going to meet Monday and decide how we will proceed.
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.
I took Cristian to Ray. Ray prayed for Cristian along with another woman and myself. Ray also gave me oil which mysteriously flows from a painting of Mary and her mother, Saint Anne. Many people credit this oil in healings. Ray also gave me rosaries for Cristian. I felt good when I left.
Cristian had therapy at the hospital today and afterwards Dr Khakoo saw him and called me and expressed her concerns. We will meet Thursday to further discuss the options available for Cristian.
I picked up Cristian today to take him to a Reiki appointment. I have been in touch with a Master Reiki woman in Long Island and we decided to start Monday. If anyone knows about Dylan a 6 year old boy with Pontine Glioma just like Cristian. Dylan was diagnosed January 22nd,2004, when he was 18 months old. Dylan was diagnosed with 9 to 15 months to live.
Today Dr.Khakoo Saw Cristian. They did a cat scan. The scan showed that the ventricles are smaller which means the shunt is working. Cristian’s eyes and his walking are really bad and the doctors need to figure out why is Cristian getting worst neurologically yet the shunt is working.