The bad news for the week...

Today did not bring the good news we wanted.


I will be short because I am tired and we just returned from a 3 mile walk in the dark, and in the rain, to a CVS to get an antibiotic for Gavin so he will be able to be at the hospital with Jacob.

Dr. Asthagiri said that Jacob's brain tumors have for the most part stayed the same. Both VS's have grown a few millimeters, but they weren't the main cause for concern right now. We did talk about cyber knife and the type of radiation they do for the VS's at NIH. I will have to listen to the recording to get the name. He said that it is time for us to decide if we want to do radiation on the right VS because too much past 3 cm and radiation is no longer an option...

One of Jacob's ependomomyas inside the spine has grown, but the spinal fluid is still flowing around it well.

Dr. A said it is time to do surgery to remove the C7 schwannoma. He said, because it has continued to grow and hasn't taken a break like NF2 tumors do sometimes, that it isn't "if" but rahter "when" it will become a problem. It could cause complete paralysis. He doesn't think that waiting and watching is a good choice anymore. He said recovery is better when a patient goes into surgery healthy, but he knows having no symptoms makes the decision to have surgery harder. Not to mention a surgery that could do harm. We have to pick the lesser of the two evils. He said he thinks when Jacob heals from the adrenal surgery Monday, he should prepare to have the spinal surgery. Jacob will come back in three months for a MRI and we'll go from there... unless he has problems and needs to be seen earlier. This will probably keep Jacob from being able to try RAD001 or Rapamycin. Dr. Asthagiri is going to talk to Dr. Smith.

Next, we went to Jacob's pre-surgical appointment and review of Jacob's CT scan. Jacob's adrenal bed mass has doubled in size in the last five months and now has "tentacles" and is wrapping around the vena cava nerve. It is now around 12 cm large (it was around 6 cm last appointment). This really complicates the surgery. Dr. Kebebew doesn't think the surgery will be laparscopic now since the tumor has gotten so big and has stretched out into other areas. Dr. Asthagiri will be there for when they are in the spinal area (for guidance if needed). He will also make sure Jacob's positioning is safe considering his spinal tumors. Being asleep and not being able to move, or say that something is hurting you for many hours can be dangerous with spinal tumors. He said the surgery could be anywhere from four to eight hours. The recovery will be longer with an open surgery as well. I guess the pain management is harder and it takes longer for the intestines to wake back up. They have to move the liver and small intestines to get to the area where the tumor is. They still do not think the adrenal gland is attached. They have no idea why this tumor has grown so fast over the last five months. Jacob asked for photos of the tumor and they said they will update me during surgery to let me know how Jacob is doing.

He will be admitted Sunday at 3:00 pm and surgery, last I was told, is at 10:00 am on Monday. I signed a gazillion consents today. They will be testing and doing research on the tumor. I also had to sign permission for a blood transfusion and one will be prepared for Jacob on Sunday if he needs it Monday.

Jacob is still having the tumor on the top of his foot removed as well.

This is so much more than we expected.

Please continue to pray. Dear God, please hear our prayers!