Kristy's Story...MRI Results

Around noon today a group of Shane's doctors called us in for the MRI results. They had one screen with his MRI from 10 days ago and another with todays. There was obviously a big difference. The tumor in the pons area, the newest one, has almost doubled in size. It was not fluid putting pressure on his brain-it is the tumor. The doctors say there is nothing else to do for him. We ask for surgery, they said it would kill him, we ask for chemo, they said no time for it to work, then we ask for radiation, they said he has already had more than he should have had. They said Michael was in a coma and has no brain activity.

Needless to say it broke our hearts, especially Kristy, Kyle, and his mom. We spent a few hours crying then started questioning the doctors answers. Why not surgery? He will die without it so why not try? It has been successfully done before but poses a very high risk of permanent damage. He may end up with his "thinking" part of his brain but in a wheel chair on a ventilator for the rest of his life. Would Michael want this?

Chemo is out. the tumor is growing way to fast for it to help. But why not radiation? Maybe a few low dose zaps of radiation would stop and possibly shrink the tumor. So we requested a meeting with a radiologist to go over the possibilities. Kristy also wants to talk to the doctors at Duke Hospital for their opinion and advice.

Tomorrow will be a very rough day. In our hearts we know the answers, we just don't want to accept them.

Kristy's Story...Long Week for Michael

Well there was no magical cure for Michael this week. Since the MRI he has progressed...backwards. He quit breathing on his own and we lost all response from him. He was slowly slipping into a coma. The doctors could not figure out why the change in him came on so fast. They stopped all his pain medicines hoping it was them putting him in the trance-like state. But that still did not bring him around.

Yesterday around noon they did a CT Scan and discovered he had swelling in his brain. They needed to do surgery immediately to relieve the fluid causing pressure. If the surgery was not done he would die shortly but the surgery could also kill him. The ICU cleared his room and did the surgery right there. Michael made it through the surgery but the drain was not working. The surgeon had to make some adjustments but finally had it draining. He was immediately showing signs of improvement.

But that didn't last long. It quit draining and Michael was slipping backwards once again. At 3:00 am they had to do another surgery on the other side of his brain to try and drain more fluid. The surgery went good and the second drain was working. Michael started immediately showing sign of improvement once again.

It is now 6:30 am and Michael is scheduled for another MRI shortly. The doctors hope to find out what is putting pressure on the brain stem.

I will update the blog as soon as possible. Pam

Kristy's Story...More Information on New Tumor

Here is an article on the new tumor found in the pons area of the brain. Michael will be treated with a drug called VC16 in place of the Temadol. If there are survivors of this type of brain tumor we need to hear from you.

Clinical Features and Symptoms

Pontine brain stem tumors affect the cranial nerves, causing symptoms related to the nerves that supply the muscles of the eye and face, and muscles involved in swallowing. These symptoms include double vision, inability to close the eyelids completely, dropping one side of the face, and difficulty chewing and swallowing. The tumor also affects the "long tracks" of the brain, with resultant weakness of the arms or legs and difficulty with speech and walking. Symptoms usually worsen rapidly because the tumor is rapidly growing.
Tumors arising in the midbrain usually affect only the nerves supplying the eye muscles. They also block the flow of cerebrospinal fluid in the brain, causing increased pressure with headaches and vomiting. Tumors involving the medulla usually cause swallowing problems and weakness of the arms and legs.

Survival Rates

Pontine Gliomas - The patients' symptoms often improve dramatically during or after six weeks of irradiation. Unfortunately, problems usually recur after six to nine months, and progress rapidly. Survival past 12 to 14 months is uncommon, and new approaches to treating these tumors are urgently needed.
Midbrain/Medullary Gliomas - With the use of radiation therapy, these patients often to well. Long-term survival ranges from 65 to 90 percent for brain stem tumors that arise from the midbrain or medulla.

Treatment Strategies

Surgery is not generally possible because these tumors (especially pontine gliomas) are widely spread within the brain stem and can not be removed. Surgery may be possible in the few patients where the tumor is very localized.
Radiation therapy has been the main treatment approach