Another Day

AA & His Buddy Bob The Builder Say "Good Night"

AA was supposed to have two procedures (mediport removal & central line placement) today but he did not. This morning we were told by Dr. G that the infection was being controlled by the antibiotics and it had not grown back since the 18^th, so no surgery is needed for now.

Last night AA had a procedure called a Shunt Tap. This is a procedure performed by the neuro-surgery department to see if his shunt is working. It was done because there was a concern that he may be having increased pressure in his brain. Michelle had to leave the room because she could not take hearing AA’s cries, I don’t blame her.  The neuro-surge team put a needle into AA’s shunt which is access through his head. He was not happy and his screams were heard on the other side of the floor. I had to stay to help him be as calm as possible and get the procedure done without him causing the Dr. to injure him since it was not done under anesthesia. After all was done, his inter-cranial pressure was within norm for his age. They took three samples of his CSF (Cerebral Spinal Fluid) and we are still awaiting those results.

Seeing our once vibrant boy starting to wilt away is totally gut wrenching. It is living a tortured existence.  He is having his eyes roll back possibly caused by nerve damage due to the cancer growth in his brain and has not had a bowel movement since last Tuesday. We did give him some Miralax yesterday and some today, hopefully it starts to work soon.

Got some bad news today as well. Yesterday's CT scan showed that the cancer is growing further in his brain. This is the first time that a CT scan has shown growth. We are worried and scared because we do not want our AA to be in any pain or discomfort if this is the route that God wants AA to take.

AA also had a blood transfusion today and some potassium and magnesium given yesterday. Things seem to get worse day by day but we have faith that God is watching over us all. In regards to his eating he has been eating everything in sight. He basically is eating nonstop, everything from croissants, mozzarella sticks, quesadillas, chicken broth, chicken, chicken nuggets, french fries...We are now told that we are going home tomorrow and we will have to administer antibiotics at home. We hope that is the case as we are all ready to get out of here. We will give more updates as we get them.

On the positive side of life, we were notified that the genetic testing performed on AA determined that his cancer was a matter of “Bad Luck” and not the case of Michelle or I giving him this disease. This also means that we do not have the gene for this cancer and are free to give AA as many brothers and sisters as we can handle without worrying that we can cause any of our future children to experience what AA has gone/is going through. Finally, some good news!

Roi & Michelle