The MRI results came in Saturday. Both tumors have grown and merged together. Washington U says there is nothing more they can do for him. We are waiting to see if Duke has a magic card up their sleeve.
Sunday, April 8, 2012
Thursday, April 5, 2012
Kristy's Story...Michael is Slowly Improving
Well it has been a long 25 days since my last post on March 11th. We have been a little busy to say the least! Me with Kristy and Michaels kids and Kristy with staying at the hospital day and night to help take care of Michael. But I have some time now to catch everyone up on Michaels current condition.
Michael has had a rough road to climb the past month but he is doing it, with Kristy's encouragement. His lungs have been his biggest hurdle to get through. A week ago the RSV infection in his lungs was finally gone. Since then he has gone from the ventilator to having a treach put in to help him breathe. Since he no longer has a big tube down his throat he can communicate, if you can read lips. Reading lips is a lot harder than you would think and he gets frustrated when we don't understand him. He won't be able to speak until the treach is capped off and he is breathing on his own.
The past several days they are turning his air from the treach off and having him attempt to breathe himself. They started the first day with one hour on his own, then they went to two, then four, and now he is doing close to 8 hours, twice a day. Maybe a few more days then he can be totally on his own.
The next hurdle is getting his body back to at least where it was before all this started. With having the stroke and being in bed for a month he has lost all his muscles. Yesterday a physical therapist started working with him to gain some strength back. He was moved to a new section of Barnes yesterday called the PIC to work more with him on physical improvements.
Along with the physical therapy they are going to start concentrating on what got him in this situation in the first place...his brain tumor. Right next door to where he is in the hospital now is the cancer section. Michael will have an MRI today to see what the tumor has been doing this past month. Then they will decide if he can handle more chemo or if something else can be done.
For those that visit Michael in the hospital his new room is in the North section. Park in the North garage on Park View Street. Take the elevator to the 3rd floor for the bridge to the hospital. Look for the Shoneburg elevators and go to the eighth floor. I don't have a room number yet so you will need to ask for it.
I will update again soon.
Pam
Michael has had a rough road to climb the past month but he is doing it, with Kristy's encouragement. His lungs have been his biggest hurdle to get through. A week ago the RSV infection in his lungs was finally gone. Since then he has gone from the ventilator to having a treach put in to help him breathe. Since he no longer has a big tube down his throat he can communicate, if you can read lips. Reading lips is a lot harder than you would think and he gets frustrated when we don't understand him. He won't be able to speak until the treach is capped off and he is breathing on his own.
The past several days they are turning his air from the treach off and having him attempt to breathe himself. They started the first day with one hour on his own, then they went to two, then four, and now he is doing close to 8 hours, twice a day. Maybe a few more days then he can be totally on his own.
The next hurdle is getting his body back to at least where it was before all this started. With having the stroke and being in bed for a month he has lost all his muscles. Yesterday a physical therapist started working with him to gain some strength back. He was moved to a new section of Barnes yesterday called the PIC to work more with him on physical improvements.
Along with the physical therapy they are going to start concentrating on what got him in this situation in the first place...his brain tumor. Right next door to where he is in the hospital now is the cancer section. Michael will have an MRI today to see what the tumor has been doing this past month. Then they will decide if he can handle more chemo or if something else can be done.
For those that visit Michael in the hospital his new room is in the North section. Park in the North garage on Park View Street. Take the elevator to the 3rd floor for the bridge to the hospital. Look for the Shoneburg elevators and go to the eighth floor. I don't have a room number yet so you will need to ask for it.
I will update again soon.
Pam
Sunday, March 11, 2012
Kristy's Story...Heart Attack, Another Stroke, Miracle
This has been one heck of a week! Last Tuesday, March 6th, on Michaels youngest sons birthday Michael had a massive heart attack. Kristy came home from work around 1:30 in the afternoon and found Michael barely breathing and his eyes rolled back in his head. She immediately called 911. The ambulance arrived and had to resuscitate him, his heart had stopped. He was rushed to the hospital and arrived barely alive. He couldn't breathe on his own and needed two heart pumps to keep his heart going. He stayed at this hospital long enough to get him stable then they sent him by ambulance to Washington U / Barnes Jewish Hospital, a larger and more equipped to handle his serious condition hospital.
He arrived around midnight and they worked on him for hours just to get him somewhat stable. A heart specialist came in to talk with us and said he was in very serious condition and was not expected to survive. But his heart did not show any blocked arteries or other defects that would cause a heart attack. They needed to figure out what caused it. At this point his heart was only functioning at 10%.
The next couple days they worked on finding what caused the heart attack. They found he has an infection called RSV. An infection normally found in infants, not grown men. With all the medicines Michael is on the infectious disease doctors had to find out if the only medicine that would get rid of RSV could be used to help Michael. Luckily it was and treatment was soon started. He is still getting the medicine for RSV.
Michael slowly started to improve over the next couple days. His heart was up to 50% so one of the pumps was attempted to be removed. Shortly after starting the procedure his heart stopped and they had to shock him back again. The following day they were successful in removing the pump so things were looking up.
But things are never easy for Michael. That evening after all his family and friends went home, except for Kristy and Sue, (Michaels mom,) Michael had a stroke. Neurologist worked all night on him and reported the next morning that he was most likely brain dead. They could get no response from him. They also reported he had sepsis. Sepsis is a serious medical condition caused by an overwhelming immune response to infection. Chemicals released into the blood to fight infection trigger widespread inflammation. Inflammation may result in organ damage. Blood clotting during sepsis reduces blood flow to limbs and internal organs, depriving them of nutrients and oxygen. In severe cases, one or more organs fail. In the worst cases, infection leads to a life-threatening drop in blood pressure, called septic shock. This can quickly lead to the failure of several organs -- lungs, kidneys, and liver -- causing death. Devastating news for Michaels family.
Kristy was told they were going to give him 2 days to improve but gave her very little hope. They wanted her to be prepared to "pull the plug" if they did not see any improvement. She prepared their oldest son Kyle and the rest of his family. Kyles heart was broke. For two days family tried to get a response from him but had no luck until... Kyle once again went to his room. Kyle bent down and yelled "Dad" into his ear and Michael opened his eyes nice and wide, he heard his son.
All Michaels family and friends were gathered in the waiting room Saturday. It was a sad, tearful day fearing the worst. Early evening the doctor came to get Kristy for her decision. He took her to a private room where she told him what happened with Kyle. He said it may have been a coincidence but if she wanted another day she could have it. She didn't want just one more day she wants the rest of her life with Michael. Doctors gave Michael only had a .5% chance of coming back. Kristy will take any % she can get.
Michaels miracle...When family arrived Sunday morning Kristy was all smiles! We hadn't seen her smile in a very long time. Through the night Michael gave many signs that he was far from brain dead! He would open his eyes for Kristy and squeeze her hand. She told his doctor and he gave Michael some commands. Michael could raise his arm and wiggle his toes when told. Throughout today he was responding, even with an attempt to talk (he can't with the respirator) and a smile. Life was good today.
Michael still has a long way to go but I believe him and Kristy will once again climb this hurdle.
He arrived around midnight and they worked on him for hours just to get him somewhat stable. A heart specialist came in to talk with us and said he was in very serious condition and was not expected to survive. But his heart did not show any blocked arteries or other defects that would cause a heart attack. They needed to figure out what caused it. At this point his heart was only functioning at 10%.
The next couple days they worked on finding what caused the heart attack. They found he has an infection called RSV. An infection normally found in infants, not grown men. With all the medicines Michael is on the infectious disease doctors had to find out if the only medicine that would get rid of RSV could be used to help Michael. Luckily it was and treatment was soon started. He is still getting the medicine for RSV.
Michael slowly started to improve over the next couple days. His heart was up to 50% so one of the pumps was attempted to be removed. Shortly after starting the procedure his heart stopped and they had to shock him back again. The following day they were successful in removing the pump so things were looking up.
But things are never easy for Michael. That evening after all his family and friends went home, except for Kristy and Sue, (Michaels mom,) Michael had a stroke. Neurologist worked all night on him and reported the next morning that he was most likely brain dead. They could get no response from him. They also reported he had sepsis. Sepsis is a serious medical condition caused by an overwhelming immune response to infection. Chemicals released into the blood to fight infection trigger widespread inflammation. Inflammation may result in organ damage. Blood clotting during sepsis reduces blood flow to limbs and internal organs, depriving them of nutrients and oxygen. In severe cases, one or more organs fail. In the worst cases, infection leads to a life-threatening drop in blood pressure, called septic shock. This can quickly lead to the failure of several organs -- lungs, kidneys, and liver -- causing death. Devastating news for Michaels family.
Kristy was told they were going to give him 2 days to improve but gave her very little hope. They wanted her to be prepared to "pull the plug" if they did not see any improvement. She prepared their oldest son Kyle and the rest of his family. Kyles heart was broke. For two days family tried to get a response from him but had no luck until... Kyle once again went to his room. Kyle bent down and yelled "Dad" into his ear and Michael opened his eyes nice and wide, he heard his son.
All Michaels family and friends were gathered in the waiting room Saturday. It was a sad, tearful day fearing the worst. Early evening the doctor came to get Kristy for her decision. He took her to a private room where she told him what happened with Kyle. He said it may have been a coincidence but if she wanted another day she could have it. She didn't want just one more day she wants the rest of her life with Michael. Doctors gave Michael only had a .5% chance of coming back. Kristy will take any % she can get.
Michaels miracle...When family arrived Sunday morning Kristy was all smiles! We hadn't seen her smile in a very long time. Through the night Michael gave many signs that he was far from brain dead! He would open his eyes for Kristy and squeeze her hand. She told his doctor and he gave Michael some commands. Michael could raise his arm and wiggle his toes when told. Throughout today he was responding, even with an attempt to talk (he can't with the respirator) and a smile. Life was good today.
Michael still has a long way to go but I believe him and Kristy will once again climb this hurdle.
Thursday, March 1, 2012
Kristy's Story...Definitely a New Tumor
After several days of testing at Duke the doctors have determined it is definitely a tumor in the pons area of the brain. It has grown since Michael's last MRI and now covers the entire area. Duke is giving Michael a dose of chemo today then they will be coming back home soon.
I am hoping the Burzynski clinic has some quick answers as to whether they can now help him.
I am hoping the Burzynski clinic has some quick answers as to whether they can now help him.
Monday, February 27, 2012
Monday, February 20, 2012
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.
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.
Tuesday, February 7, 2012
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.
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.
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.
Radiation therapy has been the main treatment approach
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
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