4 Month Old Still Waking Every 2 Hours At Night 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 most likely wondering, “What will happen?” Of course, this is only one of many thoughts that will run through your mind. How do I know this? Because I was with my brother when he was diagnosed.

He did not survive, but he was able to find treatment that allowed him 6 years with his family before he succumbed to gbm.

We discovered the tumor after she suffered a seizure in 1994. She was home alone with her three children – 6, 2½, and 1 – when it happened. His 6-year-old son ran to a neighbor and told them something was wrong with his father. Tests at the hospital revealed that he had a tumor – that’s all we understand. The doctor said we needed to make a “cut” in my brother’s skull so they could excise the tumor – but they could repeat the procedure often. Why would they repeat the procedure? Because removing a tumor means removing a small portion of the tumor at a time; Then, as it returns, the doctors would invade my brother’s brain again and take a little more of the tumor.

Don’t settle for that!

Doing what I do best, I researched everything I could find – I reached out to medical contacts to get the names of the best doctors near us. My brother and I traveled to New York City to see a neurologist on Park Avenue. He was, apparently, quite renowned for his understanding of brain tumors. At the end of the visit, he recommended that my brother put his affairs in order, because he only had a matter of months to live. He told us that the tumor was cancerous and surgery would not solve the problem.

A friend of my mother had a nephew who was a neurologist in Boston. We sent my brother’s MRI, x-rays, and test results to him. 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 clearly. He offered hope, but he did not promise a perfect life.

So what happened next?

My brother Kim was scheduled for surgery; but before he had to go through a series of MRIs (fast MRIs) that provided information for the doctor to create a 3D image of my brother’s brain so he could prepare for surgery. During the operation, Kim had to stay awake so the doctor could ask questions. Kim had to identify pictures and words and answer questions throughout the surgery so the doctor could determine if he was resecting (removing) tissue too close to functional areas of her brain.

He ended up shaving his entire head, because the little amount of hair left just looked out of place. The rest of his head was scarred that his 2 ½-year-old daughter described as like a baseball. (I’m sure he was referring to the stitching on the bump – Kim’s skull had similar stitching.) Risks of this surgery include:

  • Infection: The patient can get an infection from the wound or a deeper infection from exposure in the hospital
  • Bleeding: This could be superficial bruising or a deeper blood collection
  • Loss of smell or cerebrospinal fluid leaking from the nose if the doctor uses an anterior approach to remove the tumor.
  • Damage to the cranial nerves causing facial numbness, loss of vision, or double vision
  • Need for a blood 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 needed
  • Coma or death

This was just the beginning – but this operation allowed Kim another six years with her children. In the meantime, he underwent aggressive twice-weekly radiation and chemotherapy through a combination of IVs and pills. He was incredibly sick from the treatment (vomiting, nausea, fatigue), but he continued to work. It was not easy work either; it was a floor sander, lifting 300-pound machines up several flights of stairs. It was during one of these rides about three years after the resection that he got an incredible headache – the worst he had ever experienced.

The local emergency room said he had suffered a brain aneurysm – this is when a weak area in an artery that supplies blood to the brain swells. However, when one of these aneurysms ruptures, it causes a hemorrhage that leads to 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 left a cavity or hole in his brain that allowed blood to pool. He further explained that a possible reason the artery weakened was from the radiation.

It took him months to recover from that. But when he recovered, he returned to work and raised his three children alone. This is when things started to really go downhill for him. Doctors put him on high doses of steroids to reduce swelling and on Depakote to prevent epileptic seizures.

Here are some of the side effects he endured:

  • Insomnia
  • Increased appetite and potential for weight gain
  • Personality changes (ranging from mood swings to psychosis)
  • Muscle loss (particularly in the thighs, which bear the patient’s weight when standing, sitting, and walking)
  • Bloated appearance (distended abdomen, cushingoid swelling of the face, and sometimes a hump in the neck)
  • Fluid pools in the extremities
  • Potential for steroid diabetes

Unfortunately my brother did developed diabetes and was given insulin shots and blood sugar tests several times a day – that was one of my jobs. He was a very athletic and active person (for example, he would get up at 4:00 a.m. to peel lobsters (200 skins) as a hobby before work; then he sanded and refinished floors all day; after his work would ride. either her commute or mountain bike for 20 to 30 miles; and finally, she would clean the house and take care of her three children). He really struggled in becoming sedentary and gained almost 100 pounds.

It functioned okay – but it was slower, less coordinated, and its 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 months after a regularly scheduled MRI that came back clear, Kim’s speech worsened and he began to get headaches again. We went to the hospital and what they told us broke us.

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

Kim rapidly lost the ability to walk, talk, feed herself or use the toilet. He lost all dignity at this point. He had to eat, put diapers, and were on bed. He survived like this for about six months. He did not want to give up his independence and would try to walk, but he fell to the ground. He was 6’2″ and 160 pounds before the cancer; after all the medications, treatments, and sedentary lifestyle, he was still 6’2″, but 260 pounds. Trying to choose him was difficult – in fact, impossible. My parents were in their 70s and would try to take him – it took three of us to get him back to bed many nights. It was exhausting, but absolutely heartbreaking.

Kim lived in my house until she died. I will never forget the volunteers who came to my house just to sit with my brother – read, talk, or tell stories – anything to allow the family to have a break from the constant care. Their willingness to serve kept us from feeling alone and allowed us to go to the store without worry.

Hospice came in at the end and controlled it. He had difficulty communicating. His breath was so labored, he was rarely sane, and he was in pain. Hospice workers gave him morphine to ease the pain and he stopped fighting to live 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 experience.

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