Meagan was treated for a type of brainstem tumor called a Pontine Glioma . Treatment options for this type of tumor were limited. Because of its location, surgical options were unavailable and there was no clearly beneficial chemotherapy regimen. On this page, her treatments are listed in chronological order from diagnosis to June 21, 2004.

Diagnosis

In January of 2003, Meagan showed signs which seemed to indicate she had labyrinthitis, which is essentially an ear/sinus infection. She had some trouble hearing and difficulty with her balance. Her pediatrician recommended an antibiotic. When this didn't make a difference in her symptoms and when her balance and ability to walk got considerably worse, he recommended an MRI (Magnetic Resonance Imaging) brainscan. On Sunday February 23 we had the MRI done first thing in the morning. The MRI took about an hour and while it wasn't painful, the noise and strangeness of the process were unsettling.

First thing in the morning on Monday February 24, a radiologist looked at Meagan's films from the MRI. Unfortunately, the scans clearly showed a malignant tumor on her pons, which is a part of the brain stem. The tumor at that time was 5.5 centimeters tall, 5 centimeters deep, and 4.5 centimeters wide. The radiologist called her pediatrician at 9:35 in the morning. He immediately called us and began coordinating the process of having Meagan admitted to the hospital for evaluation.

Hospitalization

Initially, we came into the pediatric emergency room. Emma, Meagan's sister, stayed with a friend from school and her parents. The three of us (Meagan, Jon, and Julie) were in shock. We met with a team of doctors, including oncologists, radiologists, ER docs, and a stream of residents. Fortunately, the University of Michigan has a separate pediatric emergency room with private rooms for the more serious cases. Most of that day was a blur, but we looked at films, talked to doctors, and set up an intravenous line.

After initial consultations, Meagan was admitted to the pediatric hematology/oncology ward. There, we met with even more doctors. In the evening, her pediatrician visited us to check in. Julie Dybdahl, who would become the family spokesperson in the following weeks, visited with us. A pediatric oncologist explained some of the treatment options. Meagan started the intravenous steroids that night. Julie picked up Emma and Jon spent the night at the hospital. None of us got much sleep that night.

On Tuesday, Meagan had visits from her friends Emma and Kelsey. This buoyed her spirits on a very tough day. The girls played card games and talked and with a long sleeved shirt over her IV hookup, Meagan managed to mostly forget it was there. The parents talked about next steps.

In the afternoon, she had a swallow test done. In this test, a person swallows a variety of different foods and liquids. Each substance is infused with barium and an x-ray video camera captures images of the person swallowing. Unfortunately, the swallow test showed that Meagan was unable to correctly swallow thin liquids. Each time she swallowed, a small amount of liquid would be aspirated (breathed into her lungs). For two weeks, she was unable to drink liquids such as water, juice, or milk. Shortly before her birthday, she passed a subsequent swallow test and was able to return to a full range of food and drink.

Tuesday afternoon, Meagan was released from the hospital and we returned home.

Initial treatment

Meagan's initial treatment after diagnosis was high dose steroids. The purpose of the steroids is to shrink the swelling surrounding the tumor. The steroids may also have some limited effect in shrinking the tumor itself. Her two day stay at the hospital included Decadron given intravenously. Since then, she's been taking Decadron pills. Early on, she had to take quite a lot of it, which resulted in joint aches, acne, mood swings, and an enormous appetite. As the radiation treatments began to work, she was able to reduce her steroid dose, which reduced these symptoms.

Radiation treatment

Beginning in March, Meagan underwent six weeks of radiation treatment, five days per week. On her first visit, Meagan had a fiberglass mask made. It fit very tightly over her face and was solid mesh other than eye holes and a mouth hole. When she went in for treatment, she lay face up on a motorized table. The mask was placed over her face, then secured to the table with wing nuts so that Meagan couldn't move her head. The table was adjusted so that it was in exactly the same place for each treatment. The radiation machine was not a tunnel like an MRI; instead it had a large arm with a radiation head on it. The arm rotated to direct beams exactly where they needed to go. The beams themselves were six convergent x-ray beams. Two from each side and two from on top. Each beam was relatively weak, but the point at which they crossed was very intense. Because of the high radiation, Meagan needed to be by herself in the room during the actual treatment. Technicians controlled the machine from an adjacent room, monitoring her by closed circuit television.

During radiation treatments, Meagan had music playing, a blanket, and a pillow which was signed by many of her friends. These things helped her to focus on healing and make the treatments more tolerable. Meagan reports that the radiation treatments didn't hurt, but felt like a vibration. She had some spot hair loss where the beams entered and exited but didn't lose a great deal of hair due to radiation.

Meagan responded very well to this treatment. She was able to walk better, had less of a headache, and she had less double vision. We were very heartened by these improvements.

Meagan completed radiation treatments on April 22, 2003. This picture was taken on her last day of radiation. The mask was used to properly align her head so that the radiation had the maximum effect on the tumor and the minimum effect on other structures. To celebrate completing radiation, Julie and the girls joined Jon in Chicago. After daily appointments for six weeks, it was good to have a few days without any appointments at all.

Complementary treatments

We also pursued several complementary treatments. Meagan took multivitamins and antioxidants to combat the damage to healthy tissue done by the radiation. To help fight the tumor, she took Bromelaine and Maitake, along with cerebellum compus, a homeopathic remedy, and a pill which is a mixture of grape leaves, strawberry leaves and ant parts. She took a lot of pills.

Meagan visited a chi gung healer a few times a week, which helped her to feel better and to have more energy. He also recommended rotating her bed 90 degrees. Jon was skeptical, but it did seem to help her sleep.

Meagan also took a homoeopathic preparation of mistletoe called Iscador. In Europe, this has been a common treatment for cancer for several decades. We worked with Dr. Quentin McMullen at the Community Supported Anthroposophical Medicine clinic for this treatment.

We found the visualization tapes created by Belleruth Naperstak to be helpful. Meagan uses visualization to help her relax and concentrate on helping her body to heal.

Second MRI

On Tuesday, May 20 Meagan had her second MRI. The MRI was at 6:30 in the morning. Meagan reported that it went much more smoothly than the first MRI had. This was probably due to three factors: Meagan felt better physically, knew what to expect, and had a nicer MRI technician. Meagan had a shot of contrast dye to improve the quality of the scans taken by the MRI. She then spent about 40 minutes inside the MRI tube, getting pictures taken. Julie was just outside the tube, holding onto Meagan's feet and giving her signals so that Meagan would know when the pictures were being taken and she needed to be still.

At 10:00 the same morning, we met with Meagan's oncologist to see the scans. While the MRI is inconclusive and open to interpretation, there appeared to be quite a bit of improvement: The swelling around the tumor was gone and the pons was smaller, indicating a reduction in tumor size or possibly even that the tumor was gone. We had hoped that the MRI would give us a more conclusive indication that the tumor was completely eradicated, but still this was a very good result. Meagan's oncologist says that the effectiveness of the radiation treatment was among the best that she had seen.

Visit to Dana Farber Cancer Institute

On June 30, Meagan and Jon visited Dana Farber Cancer Institute, which is affiliated with Harvard University and is located in Boston. We sought a second opinion from the team there, hoping that there would be treatments available there which were not available in Michigan. Unfortunately, while there are experimental studies being run, none of them seemed to be a clear advantage at this time. We had hoped that a study would come along which would be of benefit. As of July 2003 Meagan was in very good shape so there we saw no immediate benefit in taking part in the available studies.

September 2003 Update

Meagan and family had a wonderful summer 2003, filled with travel, family, and all of the normal things people do. As of late September 2003, Meagan had essentially none of the symptoms which led to her diagnosis. She attended high school, rode her bike, and was very much her usual self. We were grateful for the blessing of this time together and hoped that it would last a long, long time.

Re-onset of symptoms

Unfortunately, Meagan began to have symptoms again in January of 2004. At first, they were minor and we weren't sure if we were really seeing symptoms again. But gradually it became clear that the headaches and minor balance problems signaled the onset of recurring symptoms. On January 30, we had a third MRI done. Analysis at the University of Michigan hospital indicated probable tumor regrowth, with some chance that what was seen on the MRI film was residual radiation damage.

In February and March, Meagan began taking an oral chemotherapy drug, Temodar. In conjunction with steroids and with the alternative medications Meagan has been taking, her headaches went away. Other symptoms got somewhat worse; these included difficulty walking, changes in vision, and a gradual decline in the ability to use her right hand and leg. Meagan was still going to school full time and her spirits were basically good. We were deeply concerned by the recurrance of symptoms, but kept uphope as best we could.

Second hospitalization

On Saturday March 27, Meagan had to be admitted to the hospital for the first time since her initial diagnosis. She had been fighting off a cold for a week, along with facing deteriorating symptoms. On the 27th, her condition became worse, with a fever of over 102 and a reduced ability to swallow. Fortunately, IV antibiotics and steroids were able to get the fever under control and return some of her ability to swallow. Meagan was hospitalized for four days, returning home after meeting with an assortment of healthcare professionals. Her oral chemotherapy regimen was changed from Temodar to VP 16. Meagan missed quite a bit of school in the process of fighting off the cold and being in the hospital. Friends, family, and lots of doctor and therapy visits kept her busy during her time at the hospital.

Home again

Meagan was released from the hospital on March 31. The month of April was a swirl of treatment visits from home health care nurses, occupational and physical therapy, massage, art therapy, Reiki, and others. Family and friends visited as well, supporting Meagan and keeping us all occupied.

Meagan needed a walker or wheelchair to get around and lost most use of her right hand and arm. That made many previously-routine tasks a challenge. She was in school one or two periods per day and got out of the house nearly every day. We found a new appreciation for the importance of barrier free spaces.

Meagan took the oral chemo drugs VP16 and Tamoxifen, along with the steroid Decadron to reduce swelling around the tumor and Zantac for her stomach. It's a lot of pills.

Friends brought us meals, which was an enormous help. The appointments and juggling work schedules for Jon and Julie left little time to run the household.

Meagan's spirits were good for the most part. Spring was here and the natural beauty around us was inspiring. It gave us hope.

May 28, 2004 update

Unfortunately, Meagan's condition continued to slowly worsen. Her balance was worse than it was, with her right side weaker and less usable. Double vision caused her to need to wear an eye patch. Her speech was thicker and somewhat harder to understand. And her swallowing, though still functional, became more difficult. Meagan continued to take VP16, Tamoxifen, and Decadron. She began taking Poly ICLC as soon as we received FDA clearance for her to do so. Her tolerance of the chemo drugs was good, though she has lost a certain amount of hair. We did not give up hope by any means, though these were difficult times.

June 18: Third hospitalization

Meagan's condition continued to deteriorate in May and June. While the chemo drugs she was taking didn't make her very sick, they didn't seem to reverse the growth of the tumor, based on her worsening symptoms.

Heading into mid June, Meagan had increasing difficulty swallowing. At first, she was okay as long as she didn't drink thin liquids. But gradually the range of things she could swallow got less and less. We began to discuss options such as a feeding tube to help her get nutrients in the event that she lost the ability to swallow completely.

On June 18, Meagan began to have difficulty breathing. Her lips turned blue and she was feeling pretty badly, so she was taken to the hospital by ambulance. A chest x-ray in the emergency room indicated fluid in her lungs. We decided as a family that we wanted to fight this, so Meagan had a tube put in to suction the fluid and to help her breathe. She was admitted to the intensive care unit so that she could continue to have a breathing machine as she continued to fight the pneumonia and possible infection. By the morning of June 19, her fever was reduced, her blood pressure (which had been low) was relatively normal, and a chest x ray indicated that her lungs had cleared quite a bit.

In the afternoon of June 19, Meagan was able to communicate a little through finger spelling. The first thing she wanted to know was what time it was, as she had been sedated since the previous afternoon. The next thing she spelled out was B-O-R-E-D. It was a big relief to have her be comfortable enough that boredom was the problem she wanted to communicate.

As of June 19, our hope was to get rid of the pneumonia which brought Meagan to the hospital, figure out how to keep it from recurring, and get her home again. It wasunclear how long that would take to accomplish, but we had hoped it would be only be a couple of days.

Unfortunately, on June 20 it became clear that Meagan would not be able to breathe without a ventilator. The tumor had taken too much of her ability to draw an effective breath. This was an unexpected, very serious setback. Realizing that she would not be able to go home or even to leave the intensive care unit, Meagan began to prepare herself for turning the ventilator off, which she realized would result in her death. We talked (through fingerspelling) about what kind of service she would like to have and we hurriedly arranged for a few visitors.

On the afternoon of June 21, the ventilator was turned off. Meagan lost consciousness very quickly. Her body struggled to go on for a few hours, but it was clear that she was gone. At 8:35 in the evening, Meagan passed from this life.

At some point, I may be able to write more about her final days, but for now this page will not be updated further. Please see the services page for information about her burial and memorial service.

Last updated July 7, 2004.