My 6 Year Old Son Keeps Going To The Toilet What Happens to a Person Who Is Dying From Glioblastoma Multiform

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What Happens to a Person Who Is Dying From Glioblastoma Multiform

If you have recently found out that you, a family member, or a friend has been diagnosed with glioblastoma mediforme (gbm), you are more than likely wondering, “What is going to happen?” Of course, this is just one of many thoughts that go through your mind. How do I know this? Because I was with my brother when he was diagnosed.

He didn’t survive, but he was able to get treatment that allowed him 6 years with his family before moving to gbm.

We found the tumor after he had a stroke in 1994. He was alone with his three children – 6, 2½, and 1 – when it happened. Her 6-year-old ran to a neighbor and told them something was wrong with her father. Tests at the hospital revealed he had a tumor – that’s all we understood. The doctor said we would have to put a “hatch” in my brother’s skull so they could cut the tumor – but be able to repeat the procedure many times. Why would they repeat the procedure? Because it means taking out a tumor at the same time; then when it came back, the doctors would attack my brother’s brain again and take out some more of the tumor.

Not satisfied with that!

Doing what I do best, I researched everything I could find out – I reached out to medical experts to find the names of the best doctors near us. My brother and I traveled to NYC to consult a Neurologist on Park Avenue. He was, apparently, famous for his understanding of brain tumors. At the end of the visit, he suggested that my brother be in order, as he only had a few months to live. He told us that the tumor was cancerous and that surgery would not solve the problem.

A friend of my mother’s had a nephew who was a neurologist in Boston. We sent him my brother’s MRIs, x-rays, and test results. He immediately called and said that the Neurosurgeon in Boston could help my brother. We made an appointment and met the doctor. What a difference!

This doctor explained everything so clearly. It offered hope, but no promise of a perfect life.

So what happened next?

Kim, my brother, was scheduled for surgery; but first he had to go through a series of MRI’s (fast MRI’s) which gave the doctor information to create a 3D image of my brother’s brain so he could prepare for surgery. During surgery, Kim had to stay awake so the doctor could ask questions. Kim had to identify pictures and words and answer questions during the surgery so that the doctor could determine if he was removing tissue (removal) too close to functional areas. his brain.

He ended up shaving his entire head, because the few hairs that were left just looked out of place. The rest of his head had scars that his 2½-year-old daughter said looked like baseballs. (I’m sure she was referring to the stitch on the ball – there was a stitch similar to Kim’s skull.) Among the risks involved in this operation were:

  • Infection: The patient could get an infection in the wound or a deeper infection from exposure in the hospital
  • Bleeding: This could be a superficial bruise or a deeper pool of blood
  • Loss of smell or cerebrospinal fluid leaking through the nose if the doctor uses an anterior approach to remove the tumor
  • Damage to the cranial nerves resulting in facial paralysis, vision loss, or double vision
  • The need for transfusion during or after the procedure
  • Weakness, numbness, slurred speech or paralysis (stroke-like symptoms)
  • Epilepsy, which may require medication (this happened to my brother)
  • Surgery may not cure this condition and further treatment may be required
  • Coma or death

This was just the beginning – but that surgery gave Kim another six years with his children. In the meantime, he underwent aggressive radiation twice a week and chemotherapy through a combination of IVs and pills. He was very sick from the treatment (vomiting, nausea, fatigue), but he continued to work. It was not an easy task at all; he was a floor sander, lifting 300-pound tools up several flights of stairs. It was during one of these climbs about three years after the resection that he got an incredible headache – the worst he had ever suffered.

The local emergency room revealed he had suffered a brain aneurysm – this is when a weak area in an artery that supplies blood to the brain collapses. However, when one of these aneurysms ruptures, it causes hemorrhage that can cause further brain damage or even death. The doctor explained that the only reason my brother didn’t die from this hemorrhage was because the resection of the tumor had left a cavity or hole in his brain that allowed the blood to pool. He also explained that the radiation is a possible cause of his weakening.

It took him several months to recover from this. But when he recovered, he went back to work and raised his three children alone. This is when things really started to go downhill. The doctors were on high doses of steroids to reduce inflammation and on Depakote to prevent epileptic seizures.

Here are some of the side effects he suffered:

  • Insomnia
  • Increased appetite and ability to gain weight
  • Personality changes (from moodiness to psychosis)
  • Muscle loss (especially in the thighs, which bear the patient’s weight when he gets up, sits, and walks)
  • Bloated appearance (painful abdomen, cushingoid swelling of the face, and sometimes a hump in the neck)
  • Accumulation of fluid in the extremities
  • Possible steroid-induced diabetes

Unfortunately my brother did developed diabetes and had insulin shots and blood sugar tests several times a day – that was one of my jobs. He had been a very athletic and active man (for example, he got up at 4:00 a.m. to pull lobster pots (200 pots) as a hobby before work; then he would sand and renovating floors all day; after work he would ride either his bike or his mountain bike for 20 to 30 miles; and finally, he would clean the house and take care of his three children). It was really hard to get sober and gain almost 100 pounds.

It worked fine – but it was slower, more coordinated, and his speech was garbled. He had MRIs every three months for two years and then every six months for the next four years. In the Fall of 2000, just a few months after a regularly scheduled MRI that was clear, Kim’s speech worsened and he started getting headaches again. We went to the hospital and broke what they told us.

The tumor was not only back, but it was the worst type of tumor – the fastest growing and inoperable. The tumor had suddenly grown like fingers spread across his brain.

Kim quickly lost the ability to walk, talk, feed herself, or use the bathroom. He lost all honor at this time. He had to be fed, diapered, and bedridden. It went on like this for about six months. He did not want to give up his independence and tried to walk, but fell on the floor. He had been 6’2″ and 160 pounds before the cancer; after all the medications, treatments, and a quiet lifestyle, he was still 6’2″, but 260 pounds. Trying to pick it up was difficult – in fact, impossible. My parents were in their 70s and would try to raise him – it took the three of us getting him back to bed many nights. It was exhausting, but absolutely heartbreaking.

Kim stayed in my home until he died. I will never forget the volunteers who came to my home just to sit with my brother – reading, talking, or telling stories – anything that allows the family to get a little break from the constant care. Their willingness to serve kept us from feeling alone and allowed us to go to the store without worrying.

The hospice finally came in and checked on him. He had difficulty communicating. His breathing was so laboured, it was rarely clear, that he was in pain. The Hospice staff gave him morphine to ease the pain and he stopped fighting for life just one day later, March 16, 2001. He was 49 years old.

I hope this information helps even one person understand what families dealing with a gbm diagnosis can be.

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