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...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...Surgeon Meeting Cancelled

The surgeon had to cancel our meeting tomorrow and he has not rescheduled yet. We did get a meeting set-up with the radiologist on Thursday. I will inform everyone what is going to take place Thursday evening.

Michael is still doing good since the surgery. He still has terrible headaches and must stay on his medicine.

Kristy's Story...Hospital Stay After Surgery

Kristy and Michael have met with Dr. Friedman this morning. Dr. Friedman wants Michael to stay close to the hospital until next Wednesday. Michael is doing good but he wants the pathology report back on the tumor he removed before they return home. Depending on the pathology report there may be other treatments needed, such as chemo. He said Michael will be able to leave the hospital and check into a hotel until he is released. That will be later today or tomorrow.

Michael is walking but very slowly. He will still need a lot of help after leaving the hospital. He is having headaches but thinks it is from the surgery, not the tumor. They have him on some pretty strong pain medicine right now. He has been unable to sleep since the surgery, nurses in and out at all hours, so maybe a quiet hotel room will help.

Kristy and Michael are still very nervous about this whole ordeal. They were hoping for a definite answer to the question "Is the tumor and cancer gone?" Because of the possibility of micro cancer cells they don't have the answer they want to hear. The doctor is doing another MRI as I write this to see if anything shows up.

I will update this story again soon.

Kristy's Story...Day After Surgery

Michael is doing great and already messing with the nurses. He feels better than he has in some time now and wants to get out of bed and move around. He will be released from ICU soon and put in a private room. Dr. Friedman has stopped by briefly to check on him but has not sat down to talk with him and Kristy yet. They really like Dr. Friedman, not only is he a great surgeon but a super nice man.

Kristy will update me after they talk with the doctor more.

Kristy's Story...Surgery is Over

This has been a very long day for Michael and Kristy. Surgery was originally set for 10:00 a.m., then it was changed to 12:30, but the doctor came in a little later and said the tumor has grown even more since he checked it three weeks ago. So the surgery ended up not starting until 3:30. It lasted only three hours and Kristy is still waiting to see Michael. He was given a strong pain killer and they want him to take his time waking up. It is now 9:30 in North Carolina.

Kristy and Michael said Dr. Friedman has been wonderful and very supportive. He says he is almost positive he got all of the tumor but there could be some micro cells. He will give them more information tomorrow when Michael is awake. Then I will pass the information on to all of you.

Kristy's Story...Night Before Surgery

Kristy and Michael are at Duke Hospital tonight. Michael had his pre-op test done, including another MRI, and he is ready for surgery tomorrow. His surgery is scheduled for 10:00 a.m. Eastern time.

I keep the boys on their regular schedules while mom and dad are gone. And they have busy schedules! One gets dropped off at school at 7:15, the other at 8:15, and the schools are about a half hour apart. Then the oldest gets picked up at 2:15 and an hour later I pick up the youngest. They have a couple hours to eat and do homework then we go to football or baseball practice or a football or baseball game. We get back home around 8:30, one hits the showers then the other the tub, they talk with mom and dad, then off to bed around 9:30. Up at 6:00 a.m. and start all over again!

So sometime tomorrow, as soon as I know something and have the time to write, I will let everyone know how the surgery went.

Kristy's Story...Traveling to Duke Hospital

Hi,

My name is Pam and I am Kristy's mom. Kristy and Michael, along with Michaels' parents, are now at the St. Louis airport. Their flight to Raleigh/Durham departs at 6:30 and arrives in North Carolina around 9:30 Eastern time, 8:30 p.m. Central time. They dropped their boys off here at 4:00 before leaving. I spoil them a little while mom and dad are gone, no I try to spoil them all the time. The past two years has been especially hard on the twelve year old. He is old enough to understand what is going on while the 5 year old just knows dad has to see the doctor again. Right now they are playing Play Station and looking forward to ice cream soon. They really miss mom and dad and worry about their dad.


Tomorrow Michael will check in at Duke Hospital for pre-op tests. Kristy won't leave him the whole time he is in the hospital. He just scoots over in the bed and she stays right next to him. Kristy's sister Stacey will join them tomorrow night. She wants to be there for Kristy during Michaels' surgery Wednesday.

Micheal has been very sick the past couple days. His dizziness has been worse and he has been stumbling a lot. His coordination has been really bad. Last night he was up most of the night sick to his stomach. Once his tumor starts to grow his symptoms rapidly increase. We all hope the symptoms will disappear after the surgery.


If there is anything Kristy wants me to say tomorrow I will post it for her.

Kristy’s Story…Living a Nightmare

Our 12 year old rides four wheelers and dirt bikes. Last weekend we were watching our son ride his dirt bike out our window. The bike died on him and we watched as he tried to kick start it himself. My husband looked at me and said “If I die then how would you be able to start it back up for him.” I just said “Honey everything is going to be ok.”  That broke my heart so much. I just love and need him so much. He doesn’t say things like that often but the worry about another surgery is getting to him. He is afraid of not knowing his family when he wakes up.

It is like we have been living a horrible nightmare for the past two years. There has not been a day I don’t worry about Michael. I am a mail carrier and while delivering the mail I think about him and cry. The surgery at Duke next week has to help…we need to wake up from this nightmare.

Kristy's Story...Physical Problems from Brain Tumors

One of Michael's biggest worries is not being able to play with and teach his boys. He worries he won't be able to do the things his boys love to do. They love to ride four-wheelers, dirt bikes, play baseball, football, and anything that keeps them active.  He was lucky after the first surgery to not have any side effects from the surgery. As I stated before the second surgery left him with a shaky left hand. He can't grasp anything with his left hand now. But that he considers minor compared to what could have been affected. 


Since the tumor has recently started to grow again he is having coordination problems. He gets dizzy and can't make his motions do as his brain wants them to do. Here is an example: Michael is one of the coaches for our 12 year olds baseball team. At our sons last ball game he was throwing the ball up in the air and hitting it to the kids. But he was having trouble coordinating the ball to the bat, this had not happened before. Another coach noticed and helped him out by taking over for him. He is hoping that his next surgery will correct this and not make it worse.


One week from today is his surgery date...I will keep everyone updated.

Kristy's Story...Waiting For the Third Brain Surgery

We arrived home on a Wednesday afternoon and waited for the doctor to call. Monday morning, September 12^th, Dr. Friedman called and said he has scheduled the surgery for the 28th of this month.  We are flying back to Duke on Monday the 26th of September. They are going to admit him on the 27th and surgery is the 28th. We will be there for at least a week. Dr. Friedman expects Michael will be a couple days in the hospital after the surgery then we must stay close to the hospital for another MRI before coming home.

We believe we have found the best care for Michael. We have heard and read that Dr. Friedman is the best brain surgeon in the world. He was the surgeon that did Ted Kennedys surgery. We feel so blessed to be here and believe Dr. Friedman can help Michael. We know we made the best choice in choosing Duke to help us.

 

I will continue to give updates on what is going on in Michaels life then after Michaels surgery I will keep everyone posted on the outcome….to be continued

Kristy's Story...Brain Cancer Treatment at Duke University

I immediately contacted them and they were so supportive and gave us hope. We had a sample of his tumor and his latest MRI sent to Duke. Dr. Friedman looked at the information and said he doesn't need another surgery but would like for Michael to come out for some test. We flew out to Duke for the first time in January 2011. Michael had an MRI that next day we met with the doctor. He told us that the tumor had not grown since the MRI in St. Louis.  He wanted us to fly back every 8 weeks for MRI’s to watch its growth.

We made several trips to Duke, every 8 weeks, like told. All the MRI’s since the first trip had shown no growth until this last on. Michael knew his headaches were different and thought that his tumor had grown. So we called Duke and they wanted us there as soon as possible. We took off and drove to Duke for another MRI. My husband was right, the tumor had grown. The doctor said Michael would need another surgery. So we drove back home, we wanted to see our boys, and waited for the surgeon to call...to be continued tomorrow

Kristy's Story...The Brain Tumor Grew Back

The following day I got a call from the doctor while I was at work and he said that the tumor has grown back.  We scheduled another appointment to meet with him right away. The only thing he could think of to do was another surgery. So April of 2010 was to be his second brain surgery. This time Dr. Coppens told us that he would have a high tech MRI machine in the surgery room to check his progress and the surgery would take about 14 hours, which it did.  The doctor came in and talked to me after the surgery and said again that he thinks he removed all of the tumor but it had changed to a grade 2 astrocytoma.

  

Michael had to stay in the hospital for a week before coming home.  This second surgery was much harder on him. The surgery made his left hand shake when he grips anything. His employer had to let him go because you can’t do construction work with a shaky hand.  And his employer could not have him back to work without a full medical release. He did ask for a full release so he could work but the doctors said no.

Two months later we had to go back for another MRI and an appointment with the surgeon to go over the MRI.  Dr. Coppens came in our room and said the tumor is back again and he is going to refer him to an oncologist in SLU hospital. We didn't know what to think or say all we could do was cry on the way home.  But we agreed to meet with the oncologist....to be continued tomorrow