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...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...Washington University Is On The Ball

Apparently the doctors can't quit thinking about Michael...that's a good thing! They have called back today and said they have continued to review Michaels' MRI's. They now believe they can get all the tumor by using one treatment, instead of five separate treatments, with the Gamma Knife. Wouldn't that be wonderful! They still have to have new MRI's to make sure the tumor has not grown much more. Keep your fingers crossed!!

Kristy's Story...Gamma Knife

I have just received some new dates involving the Gamma Knife. Monday, October 24th, Michael will have another MRI. Tuesday the 25th he will fitted for the Gamma Knife helmet. The helmet is actually screwed into his head on the treatment day and attached to the Gamma Knife machine. It is to hold his head perfectly still while receiving treatment. Then Tuesday November 1st will be his first treatment.

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.

Kristy's Story...Still Waiting on Doctors Decision

A large team of doctors from Washington University are meeting right now on Michaels' case. The meeting didn't start until 5:00 p.m. St. Louis time. We don't know if we will hear back from them tonight or tomorrow. Duke Hospital did call back today and said the Gamma Knife would be alright to do but no surgery. They want Michael on the Cancer pills and have the Gamma Knife or radiation this week. They are worried about how fast the tumor is growing.

Let's hope the process, whatever it will be, can start soon.

Kristy's Story...Call From Dr. Friedman

I called Dr. Friedman, the surgeon from Duke Hospital, to find out why so much of the tumor was not removed when we were told only micro cells remained. He called me back Friday afternoon. He said he did not see that much (about an inch of tumor was left) but knew he could not remove any more. Dr. Friedman said the tumor was growing into the brain at that section and removing it would cause Michael permanent damage.

I informed Dr. Friedman of what was going on here with seeking radiation and chemotherapy treatments. I told him the radiologist at Siteman Cancer Center is considering using the Gamma Knife or another surgery to remove more of the tumor and also put Michael on chemo pills. He recommended no more surgery at this time and no Gamma Knife. He wants Michael to have regular radiation treatments and start chemo immediately.

Now we have to wait until Monday to find out what the doctors recommend from Siteman and compare the two. If we get two totally different recommendations how do we choose???

Kristy's Story...Meeting With Radiation Oncologist

Never go into anything with real high hopes. It is better to be a little optimistic than put all your hopes into a new medical treatment. I am not saying what we heard today is all bad but we still did not get the "yes, we can cure you" answer we were hoping for, maybe Monday.

We had our appointment with Dr. Mansur, a radiation oncologist. Dr. Mansur does Gamma Knife radiation treatments to treat brain tumors. First we were with Dr. Mansur's nurse. She did the usual blood pressure, Michaels was a little high, and temperature. Then she pulled out a folder with Gamma Knife information. She went over the information and explained how the Gamma Knife works.

The Gamma Knife is a machine that delivers a very precise beam of radiation. It can have up to 192 beams of radiation focusing on a tumor in the brain. It is usually a one time treatment, unlike the standard radiation treatments which can go on for weeks. A helmet is actually screwed into your head. After the helmet is on you are taken to get some detailed MRI's. The doctors then analyze the MRI information and set the Gamma Knife's 192 beams to focus on the tumor only. This usually takes a couple hours for the doctors to set up. Once the machine is programmed and ready the helmet on your head is attached to the machine. You will not be able to move your head during the procedure but the rest of your body can be moved. They said most people listen to music or sleep through the process. Once the Gamma Knife is done the helmet is removed and you are finished. The whole process usually lasts 4 to 5 hours.

Next a resident doctor came in and talked with us. He went over some medical history then again explained the Gamma Knife. He thought Michael would be a good candidate for the procedure. But also mentioned surgery may be another possibility along with some chemotherapy. Shortly later Dr. Mansur came in and gave Michael a series of test. The test were to check his strength and coordination. He was amazed how well he did after having three brain surgeries.

Dr. Mansur then gave us his opinion. He first said Michael's tumor was a very critical one because of it's location, so close to the brain stem. He then stated he thought another surgery may be the best solution but needed to run his case by some neurosurgeons. Michael said he did not want another surgery, three have failed already. We wanted to know if the Gamma Knife would work. He said it was a good possibility but would like to meet with several specialist in a board meeting to discuss all options before deciding. He said he wanted the most aggressive treatment to cure the cancer, not just slow it down. He then went on to tell us the Gamma Knife, as with brain surgery, was not without risk. With the tumor so close to the brain stem the radiation may do some permanent damage.

So Dr. Mansur set up the board meeting for Monday with all the top specialist from Washington University and Siteman Cancer Center. We left there not sure what to think. All we can do is wait for their recommendations and hope surgery is not a part of it. We are hoping they say the "cure" is to do the Gamma Knife along with chemotherapy.

Another long weekend of waiting...talk to you Monday

Kristy's Story...Radiation is a Possibility

Eric from Siteman Cancer Center called me a short time ago and said he met with some radiologist/oncologist today about Michael's case. He said they all agreed that Dr. Friedman could have got all of the tumor because it is not touching the brain stem. They do not know why he didn't so Eric needs Kristy to have Dr. Friedman send his surgery notes to him. 

He also said it looks like they can do the gamma knife or radiation on Michael.