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

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.

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...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...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...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...Starting New Treatment

The resident doctor working with Dr. Mansur from the Siteman Cancer Center and Barnes Hospital just called me to go over what was discussed in the meeting Monday night.  I was hoping that my husband was going to be able to have regular radiation but it looks like that since he has had radiation before that he won't be able to do it again. The doctors all agreed on the Gamma Knife. Usually the Gamma Knife is only 1 treatment but they are going to section his tumor off and do it 5 different times. That way they can watch how Michael handles the radiation. They also said they want Michael to have a MRI of his spine. The reason for the spine MRI I do not know yet.

When my husband gets finished with the Gamma Knife they are going to put him on the chemotherapy pill Temadol.  All of this will be starting really soon, we hope this week. Hopefully, with all of this treatment, it will take care of the tumor for good. His kids and I need him for the rest of our lives.