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Joanne - A Medical Journey

 

A courageous woman’s fight with brain cancer and the medical system.

As told by her husband, Bob Hankamp

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Discovery - June & July 1998:

Joanne is having a lot of pain in her upper shoulder and neck area. Her arm and hand are also going numb quite often. After two months of pain pills, the neurologist in Grand Rapids orders an M.R.I. of her left shoulder. The results show the mylin is gone on a section of one of her nerves. He orders another M.R.I. taken of her head to check for the possibility of Multiple Sclerosis. This MRI shows she has a tumor growing in her left frontal lobe.

September 1998:

The surgeon in Grand Rapids schedules surgery for September 28 and does no biopsy because he says it has to come out anyway. On September 28 Joanne has surgery. The doctor does a partial extraction and does no M.R.I. after surgery to evaluate the surgery. Joanne has six grand moll seizures the night of surgery. She has a cat scan and that’s all the doctors in Grand Rapids would do for the next three months.

October 3, 1998:

Joanne’s biopsy comes back malignant grade 3 so radiation and chemotherapy are ordered. The neurologist that had ordered the first M.R.I. says she has Transverse Mylitis and the radiologist says she has M.S. The radiologist relied on Ann Arbors radiologists recommendation that she receive no treatment. So for three months none of these Grand Rapids doctors do anything for a Grade 3 tumor that was only partially taken out. After our insistence for two months, another M.R.I. is taken and a head mask is made for radiation. The reason was because the large portion of residual tumor that was left after surgery had now grown into the right frontal lobe.

December 23, 1998:

Joanne has surgery to install a "port a cath" in her upper chest area because it was always difficult to find her veins. It would be much easier with all the chemo treatments coming up. This operation didn’t go well either because the IV for all the medications popped out of her arm during surgery and it turned out to be very painful.

January 1999:

Joanne comes down with a very severe case of Bronchitis which combined with radiation for thirty days made her feel terrible the whole month of January. Toward the end of January Joanne starts a 3-part chemotherapy program (CCNU), Procarbazine and Vincristine. For Joanne’s grade of tumor, this treatment did absolutely nothing to help her.

March 3, 1999:

Joanne has another M.R.I. taken and the film shows that the tumor has all grown back and larger than before. We are sent back to the same surgeon as before. He tells us that he can operate again but he tells her she only has a few months to live. He said it is tumor growth and the radiologist said it might be radiation necrosis. We decided we would look to other large cancer facilities around the country for doctors with more experience with brain cancer, mainly with the Immunal Therapy Programs.

We contacted Dr. Keith Black, a world renown brain surgeon who specializes in brain cancer at Cedars Sinai Medical Center in Los Angeles to see if he could help Joanne. He said he wanted to view the films and then he would be in touch with us. Meanwhile, I went through the proper procedures to get insurance to pay for the operation. They refused to pay because the doctor in Grand Rapids said he could do the operation. We were contacted in late March by Dr. Blacks’ office and a surgery date was set for April 1st, 1999.We took all our savings so we could pay for the operation in Los Angeles. We decided to fight the insurance company to get the money back when we came back. We felt Joanne had absolutely no chance with the doctors in Grand Rapids. As fast as this tumor was growing, I felt I had to everything I could as fast as I could.

March 30, 1999 - Departure for Los Angeles:

We met with Dr. Wouter Schevink on March 31st to tell us what procedure was going to be done on April 1st. Dr. Schevink was Dr. Blacks partner at the Maxine Duninst Cancer Institute at Cedars Sinai Medical Center in Los Angeles. He was going to do the surgery on Joanie. She also had her pre-op M.R.I.’s done. Dr. Schevink told us that Joanie had a sizable amount of residual tumor left from the surgery in Grand Rapids along with some new growth and that he would take it all out.

April 1, 1999 – Surgery:

Joanie has surgery that lasts 3 hours. Dr. Schevink comes out and says the surgery went very well. Dr. Schevink said that he took it all out except a small piece that had grown into the center of the brain. He said that could be taken out with the gamma knife radiation, and recommended it be done within ten days. A radiologist came in to talk to us about the gamma knife, but because of the very high cost of the operation we decided to wait and see if we can have insurance pay for the operation somewhere closer to home. This also turns out to be another bad decision.

 

April 2, 1999:

Joanie has a post-op M.R.I. done. The next day she looks and feels great and is walking around the hospital. She is released from the hospital late in the afternoon and we leave for home on the 5th of April. What an unbelievable difference between the first and second surgeries.

As soon as we got home I contacted the Mayo Clinic in Minnesota about having the gamma knife radiation done right away because of the recommendation from Dr. Schevink but the clinic doctors say they want to wait for five weeks for the surgery to settle down first. Meanwhile, I find out that the tumor has been upgraded to 4 Glioblastoma Multiforme. I contacted the insurance company to tell them about the gamma knife to see if I could get it paid for because of the recommendation from the doctors. They tell me it can be done in the area at Ann Arbor. I told them they wouldn’t because they refused to do radiation on Joanie in October, 1998 because of the Transverse Mylitis problem. The insurance company said they would get back to me. During the last week of April, Joanie started having a lot of trouble with heartburn. It doesn’t matter what she eats.

May 7, 1999:

I have to take Joanie to the hospital because the heartburn is so bad. The doctors told us it was a gall bladder attack and that it had to come out right away. We told them she couldn’t have the operation right now because she had to be at the Mayo Clinic on May 10th for gamma knife radiation surgery for a brain tumor and that couldn’t wait either. The doctor gives her a prescription and puts her on a strict diet and makes an appointment for her as soon as she gets beck from the Mayo clinic. He also warns us that if it ruptures it too could kill her.

May 9, 1999: Departure to Minnesota.

We left for the Mayo Clinic for surgery that was scheduled for May 11.

May 10, 1999:

We meet with the doctors that do the gamma knife surgery and they explained the procedure to us. I asked the doctor why he waited so long with such a high grade fast growing tumor as this when the surgeon said it should come out right away and his response was; "Well he’s not a radiologist is he?" The same day the insurance company after all this time called the Clinic and said they were going to refuse to pay for the operation. Then the Clinic and hospital refused to do the gamma knife surgery unless I handed them $28,000 dollars. This they were telling to Joanie who has one of the fastest growing tumors there is. I was so mad they were lucky I didn’t go over the counter after them. They finally agreed to take a check and I would send them the rest when I got home. I would deal with the insurance company later.

May 11,1999:

Joanie has the gamma knife radiation surgery. The surgery went very well but she said the head brace was very painful. The doctor said he didn’t want another M.R.I for eight to twelve weeks. On May 12th we drove back home.

May 13th, 1999:

Joanie has an appointment with a doctor in Grand Rapids to talk about having her gall bladder removed. He said the thing is totally saturated and has to come out. He schedules surgery for May 19th.

May 19, 1999:

Joanie has gall bladder surgery. The operation goes very well but the bladder looks so bad you can barely tell what it is. The doctor said it could be caused by all the chemotherapy.

June 1999:

I filed a grievance with the insurance company over all the refused medical expenses. I had an appeals committee meeting scheduled for June 15th. After I went through my stack of notes, they agreed to help me with the medical bills. After repeated calls to Cedars Sinai we finally got the word that they had enough live tumor from Joanne’s tumor taken on April 1st to make a vaccine. That was the first good news we had heard in a long time.

June 22, 1999:

We boarded a plane and headed for Los Angeles where she was to have the skin tests to see if she was a candidate for the vaccine. Before we even got started the program director, Dr. Yu came in and told us they wouldn’t do the vaccine because the doctor in Grand Rapids said she had Transverse Mylitis and even though she didn’t now, the vaccine could cause serious side affects if it came back. So that was another big let down for us. You would think a hospital that big would do their own test. Dr. Yu sent us to a chemotherapy doctor in Los Angeles that prescribed a three-part drug program (PCV), procarbazine and vincristine and said he would call it in to the doctor in Grand Rapids.

July 1999:
By early July, Joanies memory was starting to slip a little. I contacted the Mayo Clinic because it had been eight weeks since her gamma knife and I wondered if the radiation was affecting her memory. The radiologist there said it couldn’t be because it was in an area that he didn’t radiate, so it must be new tumor growth. Yet in his report he said she had radiation around the whole area. I said I would like to have another M.R.I. taken. They tell me they can’t order one from there and the one scheduled for August 10th will be good enough.

July 10, 1999:

We have a charity golf tournament with a great turnout which helps a lot with growing bills. I can’t say enough about all our friends support throughout this whole ordeal.

July 16, 1999:

Joanie starts another round of chemotherapy drugs, a three part series of drugs. Up until now, the chemo drugs haven’t made her feel bad at all. But they also haven’t done anything to stop the tumor from growing. The doctors still refuse to try anything else, or send her to someplace where she might get some help.

July 26, 1999:

I called the Mayo Clinic to tell them that Joanies confusion and memory loss is getting worse. They recommend I get a prescription for Decadron (used for brain swelling) from the chemotherapy doctor. The doctor orders another M.R.I. taken.

August 3, 1999:

Joanne has another M.R.I. taken of the head. I had extra copies made because I’m continually sending them to doctors around the country who are involved with the Immunal Therapy Programs with the hope that somebody might be willing to try to help Joanie. After looking at Joanies’ films, I knew I had to find somebody fast because of the severe edema (brain swelling) that was caused either by more tumor growth or radiation necrosis. That was really starting to affect her. I contacted Cedars Sinai again and talked to the doctor who did her second surgery. He told me he wouldn’t do any more surgery nor would he recommend any more because of the area of the brain the tumor was in could cause serious brain damage if it was operated on.

I then contacted the UCLA Medical Center who also had an Immunal Therapy Program. I talked to a Dr. Trejo and explained what the problem was and what had been done the past year. He told me they would like to see all her films from the beginning in 1998 and they would contact us after they examined the films. So I sent them all out there airmail the same day. Not once did any of the doctors in Grand Rapids contact us and tell us the results of the films taken August 3rd.

Mid-August, 1999:

Joanie was starting to favor her left side, her arm and leg which we would find out later was from the mass developing in her right frontal lobe. She would have periods during August and September where her legs would just give out and then she would be fine again. Dr. Trejo at UCLA Medical Center called me after their medical staff had examined all her films and he also told me that she had a large Butterfly Glioma and they would not do surgery either because of the area it was located. He recommended that we try a new drug that had just been approved that summer call Temodal Temozolomide. He said the three-drug chemotherapy program she was on now was doing her absolutely no good at all. He said he would contact her chemotherapy doctor and have her start the new program as soon as possible. The down side was it was targeted more for Anaplastic Astrocytoma grade 3 than it was for the more severe Glioblastoma Multiforme grade 4 that Joanie had.

The doctor at Mayo Clinic called after he got the copies of Joanies August 3rd M.R.I. and said the brain swelling was being caused by extensive tumor growth and he recommended she stay on the 3 chemotherapy drugs which we all knew wasn’t doing a damn thing to help her. Why wouldn’t a radiologist even consider that maybe all the problems were being caused by radiation necrosis?

September 1999:

During the month of September I also contacted the Cleveland Clinic and Massachusetts General, both of which told me they couldn’t do anything with the Immunal Therapy Program unless they extracted the tumor tissue themselves. I was trying to have a vaccine made from the tumor tissue that was taken out at Cedars Sinai in Los Angeles. By the end of September, Joanie was starting to have a lot of small seizures which the doctors in Grand Rapids called "tremors".

While surfing the Internet for doctors, I came across Dr. Roy Baynes. He is the head of the Bone Marrow Transplant and Immunal Therapy Program at the Barbara Ann Karmanos Cancer Institute at Harper Hospital in Detroit, Michigan. This place is two hours away and none of the doctors in Grand Rapids ever told us about it. I contacted Dr. Baynes and he gave me the number of Dr. Andrew Sloan, a surgeon who specializes in brain tumors. I called him right away. He wanted to know what was happening to Joanie and what had been done. He also specializes in gamma knife radio surgery. He knew what I was talking about. I told him what all the other doctors had said and he told me just because some doctors won’t operate doesn’t mean others won’t. that’s all I had to hear. I made an appointment to see Dr. Sloan on October 11th.

October 3, 1999:

Joanie’s seizures were getting much worse and almost non-stop so I took her to the hospital. Her Dilantin (seizure control medicine) level was way too low so they put her on IV’s of large doses of Dilantin and Deladron to bring her brain swelling down and her Dilantin level up where it should be. She was in the hospital for eight days. During that time the surgeon that did her first surgery came in and said he couldn’t do any more for her nor would he refer her to anybody such as Dr. Sloan that might be able to help her. This surgeon also called Sloan’s office later and said to just "let her go".

The chemotherapy doctor came in and told Joanies family and I to just take her home and make her comfortable because there was nothing anybody could do for her. I said I had no intention of doing that because as soon as she was well enough to leave the hospital, I was taking her to see Dr. Sloan at Harper’s Hospital in Detroit. He said he would OK that. I later found out it was because the West Michigan Cancer and Hematology Center had been working with the Karmanos Institute in Detroit on chemotherapy programs.

October 11, 1999:

Joanie left the hospital and on October 12th we left for Detroit to see Dr. Sloan. He said she looked remarkably well for all she had been through. The first thing he did was send her down for an M.R.I. to see if he could tell the extent of tumor growth and radiation damage. Dr. Sloan scheduled surgery for October 22nd. She had contracted a urinary tract infection somewhere along the line and Dr. Sloan said that would have to be taken care of first, along with a physical and blood tests. These were done and we left for home.

October 14, 1999:

Physical therapists from Grand Rapids came over and put her through some tests and she was doing great. They said they would be back after she returned home from her next surgery on October 22.

October 17, 1999:

Joanies seizures were beginning to start up again. Milder at first but increasing in intensity. I called Dr. Sloan to see what I should do. He said take her to the hospital and have her Dilantin level checked. I did that and her levels were okay. Dr. Sloan advised the doctors to increase her dosage a little and see if it helped at all. It did at first but by the next night, her seizures were getting much worse.

October 19, 1999:

I called Dr. Sloan’s office to see if we could bring her to the hospital early because her urinary tract infection wasn’t any better and her seizures were getting worse. They advised me to bring her in the next day.

October 20, 1999:

I put a bed and a wheel chair in our van so Joanie could lie down on all our trips. Joanie wasn’t feeling very wall at all. A combination of the seizures and the infection were wearing her down. Her sister and I helped her into the van and I left for Detroit. When I got there Joanie was almost unconscious. I carried her into a wheelchair and took her into emergency. The doctors put her into a bed right away. By now, she was completely unconscious. Several doctors came in to look at her and then Dr. Sloan came in to look at her. He pinched her to get a response, then asked me what happened to her. I told him these are the "tremors" that the Grand Rapids doctors diagnosed. He said those aren’t tremors, they’re seizures. He asked me how much Dilantin she was on and I told him what the Grand Rapids doctors prescribed. He said she should have been on four times as much.

October 21, 1999:

Joanie didn’t get to move out of the emergency room until the next day because the hospital was full. She was still only semi-responsive when they moved her to her room. She was only there a short time when they moved her up to Neuro ICU because the nurses on the main floor really didn’t know what to do for her. The nurses in Neuro ICU dealt with these types of conditions all the time. First, they had to get rid of the urinary tract infection before surgery.

October 22, 1999:

Joanie was taken down early for an M.R.I. which the doctors told me showed a massive growth in the right frontal lobe that had to come out right away. The surgery was scheduled for eight hours which was three times longer than her other two surgeries and much more complicated. The surgery started at 10:00 a.m. and Dr. Sloan came out to talk to me and Joanie’s two sisters about 6:30 p.m. He said he had good and bad news. First the good news. The massive growth in her right frontal lobe that was causing all the problems was all radiation necrosis with no signs of any malignant tumor growth, the bad news was he had to stop cutting because it had progressed to her motor skills level. He said that was good because the damage that was done by the gamma knife by Mayo Clinic in May might be controlled and stopped by several treatments of Hyperbaric Oxygen.

In the next week at the hospital, Joanie recovered very rapidly, much better than the doctors expected. After two days in Neuro ICU Joanie was moved to a regular room in the hospital. For the next couple of days she improved very rapidly with the help of speech and physical therapists.

October 28, 1999:

The doctors told us Joanie could go home the next day but they wanted us to go talk to the doctor in the burn unit who also ran the Hyperbaric Oxygen chamber. The doctor went over the complete procedure with us and told us that Joanie would have to spend 1&1/2 hours a day, five days per week for thirty days and be evaluated by myself to see if I noticed any changes and go from there with more treatments. This was another case where I wound up having to go through the insurance companies grievance procedures and appeals committee meeting to get this paid for.

November 4, 1999:

We drove back and forth to Detroit every day until a chamber opened up in Grand Rapids. We did this for over twenty days. From what I could see, it looked like it was working very well.

November 12, 1999:

Joanie had her two-week post-op exam with Dr. Sloan in Detroit. He said he couldn’t believe how good she looked and was walking. On the downside, he also said the pathologist had found some tumor tissue mixed in with the mass of radiation necrosis, when at first they didn’t think there was any at all. He said they were making a vaccine from the tissue for Joanie. He said to stay on the Hyperbaric Oxygen treatments for now.

November 30, 1999:

We met with Dr. Roy Baynes at the Wertz Clinical Cancer Research Center at Harper Hospital in Detroit. He explained the whole process of the Immunal Therapy Program to us. Then the nurse set up a schedule for Joanie.

December 1, 1999:

Joanie had her one-month post-op M.R.I. done to get ready for her vaccine program.

December 3, 1999:

Dr. Sloan calls me after viewing the M.R.I. and tells me to stop all the Hyperbaric Oxygen treatments because he can’t be sure if the oxygen is stopping the necrosis or feeding the cancer.

December 6, 1999:

We left for Detroit for Joanie’s first round of vaccine treatments which would be for five days in a row. Joanie handled the treatments very well with the exception of the four injections that she had every day. They gave her a reaction in her back that lasted for about a half-hour. She did this for five days and they had a week off.

December 20, 1999:

We left again for Detroit for Joanie’s second round of treatments. These treatments are very expensive and are not covered by insurance. She also had a skin test this time along with the injections.

December 22, 1999:

The nurse calls us and says that according to the spot on her arm, the skin test was reacting the way it was supposed to. She was still having reactions every day in her back to the shots. She was scheduled to start her next vaccine treatments on the 3rd of January 2000.

December 28, 1999:

Joanie was a little confused but that was understandable with all the major surgeries and drugs and the personal hell she had been through the last year and a half. Joanie looked good and was feeling good so we got together with her two sisters and their husbands and went out for dinner that night.

December 29, 1999:

We woke up around 7:00 a.m. Joanie said she felt good but wanted to sleep for a while yet. I told I’d get her up in a couple of hours. I went in to wake her up at 9:00 a.m. and she wasn’t breathing. After calling 911, I did CPR until the ambulance personnel arrived, but I got no response at all. I felt like someone had torn my heart out. Emergency personnel worked on Joanie for another ˝ hour before they said there was nothing more they could do.

The doctors in Grand Rapids didn’t want to do an autopsy, writing her death off to complications from a Glioblastoma Multiforme. They had no interest in finding why she had died, or that it might help somebody in the future with this very serious form of brain cancer. When we first went to these doctors over a year earlier, they had no idea what to do for her.

The City of Grand Rapids now has a new Medical Research Center funded by the VanAndel family. It is my hope that they will take a bigger interest in cases like Joanies and will be more critical of the qualifications of the surgeons they have extracting these tumors. I took Joanie to Detroit Harper for an autopsy and after a four-month autopsy of her brain, it showed she had died from a heart attack. There was virtually no sign of the cancer she was fighting, but there was extensive damage from all the radiation (necrosis).

With a fast growing high-grade tumor like Joanies that could double in size in a matter of a few weeks, we searched the country from coast to coast for medical facilities with doctors and Immunal Therapy vaccines that may be able to do something to help save Joanies life. With very little time to waste and absolutely no help from the doctors in Grand Rapids, we found Dr. Andrew Sloan and Dr. Roy Baynes at the Karmanos Cancer Institute in Detroit, Michigan through the Internet. Dr. Sloan is a leading brain surgeon who also specialized in gamma knife radio surgery and Dr. Baynes who I the head of the Bone Marrow Transplant unit at the Wertz Clinical Cancer Center at the Barbara Ann Karmanos Cancer Institute in Detroit.

I have no doubt at all that had I any help at all in finding these doctors at the onset of Joanie’s cancer, she would be alive today. The patients family has to find the medical facilities for them and the Internet is your greatest asset. The HMO’s will force you to use their doctors regardless of the condition of the patients or what the patient and family think of the qualifications of the doctor. These are very serious life-threatening tumors and you have every right to seek out the best available physicians and treatments that you choose regardless of what these HMO’s tell you to do. GET MORE THAN ONE OPINION!

I’m dedicating this story to Joanie Hankamp. My wife, best friend, my son’s mother and the most courageous person I have ever met and who I will love forever. Also to her sisters’ Jerilyn and Janet to whom I will never be able to say thanks enough for all their help.