Kristy's Story...Back at Duke Hospital

I have been putting off writing this but it is time I caught everyone up on Michael's condition. He met with his doctor from Washington University last Friday. He is the doctor that put him on a medication to help diagnose if Michael had a stroke or a new tumor is causing his recent physical problems. The following is his conclusions:

Michael has had a stroke. But the doctor doesn't know what caused it. It could be from his original tumor or a new one, his chemo medicines, or radiation fall off. If it was from his tumor there is no reversing his symptoms. If from the chemo or radiation the brain can relearn what has been lost. He would not be as he was before the stroke but much better than he is now. Right now he has little use of his legs and only partial use of his left hand and arm. He lost his vision in his left eye and his speech is very hard to understand. The doctor wants him to go to Duke next week and see if they can determine what caused the stroke.

 

Michael and Kristy left last night for Duke and safely arrived there at 8:00 p.m. My Kristy is one tough lady and determined to save her man. She has done everything in her power to help Michael and his recent physical problems have made her even stronger. When I dropped them off at Lambert airport she had Michael in his wheel chair, a backpack and duffel bag on her back, and a mission in her eyes. If there is something out there to help him she will find it.

 

They have a busy schedule this week starting tonight with a CAT scan. He is also scheduled for another MRI and a PET scan. Then meetings with several doctors to go over all the results starting on Wednesday. This trip could possibly include another surgery to get a biopsy of the new tumor, if they determine in fact it is a tumor. They have a long week ahead of them and hope to get some answers as to what is going on in Michael's brain.

I will update you when we get some results back.

Pam (Kristy's mom)

Kristy's Story...Michael's New Challenge

As you all know by the last post Michael had an MRI that revealed a new enhancement. The enhancement is in the pons area of his brain, a critical area that controls your coordination and communication between your brain and spinal cord. The "enhancement" is still not diagnosed. We have Duke University saying it is a new cancerous tumor and Washington University saying they believe it to be inflammation. If it is inflammation it could be caused by a few things including Michael has had a stroke, the radiation fall-off, or maybe just because he has a brain tumor.

Michael had the numbing of his face which prompted the MRI. Since the MRI he has lost all coordination and can not walk by himself without falling. He lost the use of his arms and could not feed himself. He has a hard time swallowing food or drink. He slurred his speech and was very hard to understand. He lost his vision in his left eye and wears a patch over it to help with his sight coordination. All the symptoms he has are symptoms of a problem in the pons area of the brain.

So we have Michael struggling to gain his normal body functions back and two of the top medical universities in the country with totally different opinions on what the "enhancement" is and how to treat it.

First Duke, as stated they believe it to be another tumor and want to get a biopsy of it. With a biopsy, if it is a tumor, they could possibly have a vaccine to treat it. The vaccine availability would depend on the tumors cancer grade.

Washington U wants to treat for inflammation. They would put him on anti-inflammatory pills and see if Michael has any improvement. If there is no improvement then Michael could go on to Duke for the biopsy.

We went with the Washington U suggestion and Michael started the anti-inflammatory pills last Friday night. After three days he is starting to show some improvements. His speech has improved somewhat and he was able to feed himself today. He will stay on the pills all week and see his doctor again Friday for an evaluation. We will let you know the outcome.

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

Kristy's Story...Our Good News is Always Followed by Bad

Why can't we have some good news without it being followed by bad? Michaels' doctor from Duke called yesterday to give us the report on the recent MRI. The tumor had shrank some more, good news, but...there is a new tumor, very bad news. The doctor was not 100% sure it is a new tumor, it could be radiation damage, but he believes it is a tumor. It is on a critical part of the brain and Michael would become paralyzed if they try to remove it or even try to get a sample of it to find out if it is the same type tumor.

They are going to change his Temadol chemo medicine to a new drug then do another MRI in about four weeks. They are hoping to find out exactly what the new enhancement is, tumor or radiation damage. Michaels' recent symptoms of numbness in the face and left side of his body are related to problems associated with damage to this part of the brain.

About the same time we found out about the new tumor we heard from Roswell on getting the brain cancer vaccine, Michael was not chosen to receive it. We then contacted the Burzynski clinic in Houston and was told they are only taking children at this time.  We just can't catch a desperately needed break.