Kristy's Story

My Husband Has Brain Cancer

Hi, My name is Kristy and Michael is my husband.  We are from a small town near St. Louis, Missouri. I need to tell my story about how our lives changed when Michael was diagnosed with brain cancer. We married young, each of us only nineteen, but it worked for us. We are hard working parents of two boys and they are the loves of our lives. After nine years of marriage we had just bought our first home. A week later our lives changed forever.

In September 2009 my husband Michael started getting bad headaches. Michael worked in construction and in the mornings when he went to put on his boots he would just break into sweats.  He was starting to get sick at work so he knew something was wrong.  

In October 2009 he made an appointment with his primary doctor, Dr. Miles.  Her office was located in the St. Johns Medical building, near St. Johns Hospital.  We told her that Michael was having headaches and feeling sick and we thought he needed an MRI but she didn't agree. Dr. Miles said Michael needed to start physical therapy, but we knew that wasn’t the problem.  We kept telling her, for a month, that he needs an MRI.  Finally I told her if she doesn't set him up with an MRI then we were going to change doctors.  She finally agreed.  

Michaels MRI was set for November 13, 2009, which was Friday the 13th.  On our way home from the MRI, around 7:00 that night,  we got a call from Dr. Miles saying that Michael has a golf ball size brain tumor in his cerebellum.  She wanted us to go to St. Johns Hospital right away and we did.  We were so scared at this time, not only does he have a brain tumor but we have 2 boys, ages 10 and 3, and we were only 30 years old.

Michaels First Surgery

We got to the hospital that night but the surgeon didn't come in to see us until the next morning.  The Doctor told us that he looked at the MRI and thinks he can remove his tumor but only gave us about a 50% chance of my husband making it through the surgery. He then told us that we could get a second opinion.  We looked at one another and said that is exactly what we wanted to do.

  

We called around and we both agreed he needed to go to Saint Louis University hospital. He was transferred by ambulance to SLU that Saturday. When we arrived at the hospital it was over the weekend so we didn't even meet the surgeon until that Monday morning. Dr. Coppens came into his room and said I can remove this tumor! We were so thrilled to hear that. Surgery was set up for the following day.

The next day his surgery only took 4 hours and when I got to see him afterwards he was fine.  Sitting up and talking. Dr. Coppens talked to us and said that he thinks he got it all and that it was a grade 1 astrocytoma tumor, which was benign.  We were excited and thought we had just beaten the odds. Until four months later when Michael was checked with another MRI. After the MRI we were sent home thinking all was well, except Michael was still getting headaches.

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.

Brain Cancer Radiation Treatments

We met with the oncologist and Michael spent the summer going through 30 treatments of radiation which made him tired and nauseated.  Dr. Walz was his oncologist and he told us that he won't do another MRI until a month or so after the radiation treatments ended. The month passed after radiation and an MRI was scheduled.  After the MRI we went home and the next day Dr. Walz calls and talks to my husband while I was at work. He told him that the radiation did not work and there was nothing else he could do.

Now we had no clue what to do but to contact the surgeon and see if he could remove it again.  He told us he could but was worried because the tumor was so close to the brainstem.  But we didn’t know what else to do so we had another surgery scheduled again.

But I knew that this wasn't the answer. If the first two surgeries didn’t work why would this one be different? So I started looking for another plan.  I jumped on the internet and researched many places that dealt with his type of tumor. I searched for clinical trials. I read any information I could get my hands on if it dealt with brain tumors. Then I found the place I believed to be the best, Duke University in North Carolina.

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.

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 Kennedy's 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. After Michael's surgery I will keep everyone posted on the outcome….to be continued

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 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.

More Bad News

Kristy and Michael met with the doctors today to discuss Michaels tumor. The surgery did not get all of the tumor and they found out why today. The remaining tumor is about one inch in size and on a critical part of the brain. If they remove it it will cause permanent damage.

The doctors say the tumor is growing fast. They want Michael to start radiation if the radiologist thinks he can do it without causing other damage. If he can't do radiology then Michael will start chemotherapy immediately. They need a treatment started this week because of the rapid growth of the tumor. The treatment, whether radiation or chemo, will be back here in st. Louis because of the length of time required for both treatments.

Michael and Kristy are on their way home now and should be here late tonight. They will return to Duke Hospital in 8 weeks to check his progress on whatever treatment Michael starts.

Please follow the posts starting in October 2011 to continue with Kristy's Story.