Kristy's Story...He Squeezed My Hand

Kristy just called me from the hospital to say Michael just squeezed her hand when she ask him too. She told the nurse and the nurse said she told him to squeeze her hand earlier and he did. The doctors had said any movement was just reflexes, he couldn't obey commands...but he just did.

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...MRI Results

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.

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...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.

Kristy's Story...More Twists and Turns in Our Life

Well, where do I start? I know we have a month of catching up since I last posted. I have had so much going on it is very hard to breathe much less write a story. Besides the brain cancer treatments we have some family issues that have changed our life, we hope temporarily. So I think that is where I will start.

It started mid December, one week before Christmas, with a phone call from Child Protective Services. They wanted us to take in three kids that were being removed from Michael's sister. She has six kids, three girls and three boys, and wanted us to take the girls. I won't go into the whys right now because this issue is still being looked into. Any way we ended up taking in the three girls. The ages are 16, 12, and 11. The 16 year old gave us so much trouble and attitude we had to request she move in with her grandma, Michael's mom, along with the three boys. But the other two girls are still with us. Needless to say we now have two more mouths to feed, clothe, get to school and back. homework, and the list goes on. Our time is pressed to the max.

Now to Michael. He has had a rough time the past month. The chemotherapy has finally hit him pretty hard. His blood platelets are low and making him very tired. My "never sit down husband" has had days where he just doesn't want to do anything. He just did a new blood work-up to tell us what needs to change to help him. They are talking of spacing out the days he takes the chemo instead of doing the doses in five days every few weeks.

Within the last couple weeks Michael's face has become numb and he mentioned this to his doctor Friday. The doctor is concerned and wants to do his MRI now instead of waiting another three weeks. He says the numbness is a sign the tumor could be growing again. The new MRI is scheduled for this Thursday, February 2nd. I will inform you of the results when we get them.

Lastly we heard about a new vaccine that is claiming to cure cancer!!! The story aired on TV stating Roswell Hospital in Buffalo, NY is choosing 18 to 20 people, I know not very many, to get the vaccine. I was the first one to get through to the phone number when lines opened and signed Michael up. They took some information from me and have emailed me a couple times since. They are to call me Monday for more medical information. Roswell received over a thousand calls in the first couple hours.

Enough for now. I will let you know the MRI results and if Michael gets chosen to receive the vaccine.

Kristy's Story...Another Round of Chemotherapy

Sorry we haven't been posting much lately. It has been hard to find time with the holidays and as a mail carrier during Christmas my hours working have been long.

Michael is going fine now that we know the tumor has stopped growing for now. It was really scary for a month not knowing if the radiation stopped it. The first time he had radiation the tumor stopped for a year. We now know that if it decides to start growing again it will come back quick. He has another MRI in six weeks and will continue to get them every eight weeks.

Michael goes tomorrow for another Avastin treatment then starts another round of Temadol chemotherapy pills. This schedule of Avastin will continue as long as the tumor does not start to grow.

Thanks for everyone's support and we hope you all have a very happy new year.

Kristy's Story...Good News On New MRI

Kristy and Michael have just called me from Duke Hospital. Michael had his MRI early today and then they met with Dr. Friedman to go over the results. Finally some good news, the tumor has shrank some. They cannot tell if the tumor is still alive or if it is dead cells unless they do a biopsy. Doctor Friedman does not want to do a biopsy yet, he wants more time to watch it first. Michael is to continue on the Temadol chemotherapy and the Avastin treatments then do another MRI in eight weeks.

I want to give a special thank you to my friend Debbie. If she had not been able to get us hooked up with a radiologist so quickly we may have had a different result today. With Debbie's help and the quick actions of Eric and Dr. Mansur of Washington University, may have saved Michaels' life. A million thank yous to Debbie!

Kristy's Story...Back at Duke Hospital

Michael and Kristy have safely arrived in Durham N. Carolina. They will go to Duke Hospital tomorrow, Nov. 13th, for Michaels' MRI then meet with doctors to discuss the results. This will be the first MRI since his radiation. Michael feels it has stopped growing for now so let's all hope he is right. He is usually pretty good at knowing when something is different with the tumors growth. We all hope they are told it is shrinking, or better yet, gone.

I will let you know the results tomorrow evening.

Pam

Kristy's Story...Michael Is Doing His Second Round of Chemo

Monday Michael went back to the Siteman Cancer Center for his second intravenous Avastin treatment. Things went well this time, everyone was on schedule so it didn't take as long this time. He has also started his second round of chemo pills, Temadol. He started them Tuesday and will take six pills a day for five days again. Last time they made him sick so let's all hope he is better this time.

I would like to thank everyone that has made a donation through this blog. I can't tell you how much it has helped us. Here is a huge thank you to Max and Judy, Debbie, Dennis, Steve, Kristina, Frank, Peggy, Laura, Tom and Amanda, and Kim. We hope to see all of you at the benefit Saturday night. For more information on the benefit please click on Benefit in the menu. Thank you, Kristy

Kristy's Story...Just Our Luck

Michael was ready to go for his fourth radiation treatment when the phone rang. It was Eric from the Siteman Cancer Center saying the radiation machine (Gamma Knife) is broke. So they had to reschedule for this Friday morning, if the repair is finished. He will also see his chemo doctor Friday because he was approved for the Avastin drug. He will get that injection after the radiation Friday and every two weeks thereafter.

Michael has had some issues with his treatment but nothing serious. Mainly getting dizzy and/or sick to his stomach. He lost two of his Temadol chemo pills due to being sick. He takes two at a time three times a day for five days. Then he goes off the pills for three weeks then another five days on. His prescription is for eighteen months, sounds like a long time to be on chemo...but if it works we'll take it.

Kristy's Story...Spoke With Dr. Burzynski Patients

We decided to look more into Dr. Burzynski's clinic. Most of the information seems very good. As a matter of fact it sounded so good we decided to look up some of his patients and try to call them. We were actually able to reach two of them and had long conversations with both. We were very impressed with their outcome and decided if more treatment is needed after his radiation and chemotherapy we would head to Houston and meet Dr. Burzenski. They both highly recommended his treatment.

As of right now Michael has had two radiation treatments and is scheduled for three more. This coming Monday, then Wednesday, and the final one the following Monday. He started the chemo pills Temadol Thursday evening. And last we are still waiting on insurance approval for another drug, Avastin. The following is a little information on the Avastin drug:


May 6, 2009 -- The FDA has approved the drug Avastin to treat a type of brain cancer called glioblastoma that progresses despite treatment with other therapies.
Genentech, the company that makes Avastin, announced the FDA's approval, calling Avastin the first new treatment for glioblastoma in more than a decade.
According to Genentech, the FDA based its approval on two clinical trials that together included more than 200 glioblastoma patients. Between 20% and 26% of patients showed a tumor response to Avastin that typically lasted for about four months.
Genentech notes that no information is available from clinical trials showing that Avastin eased disease-related symptoms or increased survival among glioblastoma patients.
Avastin inhibits a protein called VEGF (vascular endothelial growth factor) to curb the growth of new blood vessels that supply blood to tumors.

We will keep you informed on Michaels' progress.

Kristy's Story...Has Anyone Been Treated by Dr. Burzynski?

I have been following the recent stories on Dr. Burzynski and his fight for FDA approval. If anyone has been treated by Dr. Burzynski or know of someone treated by him please contact me. We had contacted his clinic when Michael was first diagnosed but was shocked at the high cost of the treatment. That was when we turned to Duke University and Dr. Friedman.

Now, with all that has happened the past five weeks with Michael, we may want to take a second look at Dr. Burzynski. We hear he is a hoax but I have never see any evidence of a hoax. So if there is anyone that has gone to Dr. Burzynski's clinic for treatment could you please let us know about how the treatment worked, or didn't work.

Kristy's Story...Michael's Tumor Will Never Be Gone

Once again Michael and Kristy were hit with another bomb. First they met with the surgeon and radiologist yesterday to be fit with a mouth plate he needs to wear for the radiation treatment tomorrow. They were told because Michael has had radiology before there is a up to a 10% chance of some permanent damage. Fallout from the radiation could go into his brain over time. they won't know the full effects for months after the treatment. Also this treatment will be the final time Michael could ever have radiation.

Then they met with the chemo-therapist for some more bad news. Their doctor said no one has ever been cured from his type of tumor. There are treatments to slow down the tumor, such as the radiation and chemo, but he will always fight this tumor. Michael will start the chemo tomorrow when he does his first radiation treatment.

Besides this on-going treatment Michael and Kristy are searching for clinical trials. Maybe there is a cure but no one knows it yet...let's hope.

If anyone has gone through this same brain tumor fight, or knows of someone who has, please tell us what you tried, especially if a treatment worked...we are getting desperate. Even if the treatment was unconventional, food to eat for a special diet, pills or drinks from a health store, went to another country for treatment, or any other knowledge you can pass along to us.

Kristy's Story...Washington University and Dr. Friedman Agree on Treatment

Dr. Friedman from Duke Hospital phoned over the weekend to say he was in agreement with the treatment plan Washington U doctors decided to try on Michael. Michael and Kristy are at Siteman Cancer Center today to get a mouth plate fitted for the first of five radiation treatments scheduled for Wednesday. After they finish with the mouth plate they will be meeting with a chemo-therapist to get started with the Temadol chemo pills.

Kristy's Story...New Treatments to Start Next Week

We aren't sure where, Washington University or Duke University, but new treatments will start next week. Michael has an appointment Monday at Washington U to be fitted for a mouth plate. He has to wear it for the radiation treatment scheduled for Wednesday. He also has an appointment with a chemo-therapist Monday to get him started on Temadol chemo pills. But all this depends on what Duke U comes up with.

The recent MRI and all records from Washington U have been sent to Dr. Friedman at Duke. He called today to say he has received everything and will be working on a plan tomorrow. Once we know Duke's plan we can make our decision. Duke may want us to go on with the treatment with Washington U.

I will let you know what decision we make.

Kristy's Story...Life Goes From Bad to Worse

Shane had a new MRI done Monday. Yesterday Michael and Kristy went to Siteman Cancer Center to get him prepared for the Gamma Knife procedure. I had the kids here so they stopped to pick them up after their appointment. I knew as soon as I saw them there was big trouble. They both looked like they had been crying and Kristy could hardly walk. Michael's tumor had grown so big they can't do the Gamma Knife. It is close to the size it was when Dr. Friedman removed it less than a month ago. The Washington University doctor said he has never seen a tumor grow that fast. He then told Michael he was not going to survive and there was nothing that could be done.

But Eric, the first person we met with at Washington University, was also in the room with them and as they were leaving he stopped them. He said there was one other option, he could use an extension to the Gamma Knife. There are only four in the country and he has one of them. It is a radiation treatment with the precision and strength between regular radiation and the Gamma Knife. The radiation treatment would have to be done over several days by sectioning the tumor off into smaller sections. He wants to see them on the 31st to go over his radiation plan and start Shane on chemotherapy.

In the mean time they have calls in to Dr. Friedman at Duke. They want his opinion and maybe even the possibility of removing it again. We should have an answer from him soon. Pam (Kristy's mom)

Kristy's Story...Brain Cancer Benefit for Michael Shane Thomas

Kristy and Michael are at Siteman Cancer Center right now. Michael is scheduled for his MRI's tonight. His first one is the spinal and the second is for the brain tumor. I wanted to take this time to tell everyone about a Brain Cancer Benefit for Shane Thomas. Most of Michael's family and friends call him Shane, Michael is his first name but he prefers to be called Shane.

Please read the following and if you can make it we would love to have you. There is a $10 cover, live music, 50/50 drawings, lottery tree, $2 bottle beer, and food at a reasonable cost. The benefit will be held December 3rd from 7:00 to 12:00 at 3594 Carol Park Road, House Springs, MO.