Googling Glioblastoma

This post is #106 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

The day we returned to Arkansas Children's Hospital to have the sutures removed after Hannah's brain surgery in February 2008, we were told that her tumor was a Grade IV Glioblastoma Multiforme. My brain immediately started whirring; mentally spelling out g-l-i-o-b-l-a-s-t-o-m-a, fully intending to google it the second we got home. Then the doctor's voice brought me back to that little treatment room ... he was saying, "Now, don't go home and google glioblastoma. You won't like what you read about it ... and besides, what you read won't apply to Hannah anyway. Most people who get glioblastomas are older and the prognosis is not good. She's young and healthy, and with treatment, I think she's got a good chance of cure."

Our family made several decisions that day, the biggest of which was that we were going to place Hannah in God's hands and fully trust Him in this situation. One small part of that larger commitment was to follow the doctor's advice and not google glioblastoma. I studiously avoided any information about glioblastoma cancer. When Ted Kennedy was diagnosed with glioblastoma about a month later, I put my fingers in my ears and sang, "La la la la la la la" every time they talked about it on the news. Well, not literally, but you know what I mean! I did listen to the Ted Kennedy stuff enough to know that he was on the exact same treatment protocol (surgery, radiation, Temodar) as Hannah was ... and I figured, if that's what Ted Kennedy is getting, it must be the best treatment available. So I felt good about the treatment she was getting.

Over time, it almost became a source of pride for me. I had so much faith that God had everything under control, I didn't need to know anything about glioblastoma. And things were going so well. Hannah had completed her radiation treatments, she'd had several clear MRIs, she was dealing well with the oral chemo drug. Actually, I was kind of afraid that if I did google it, what I saw might shake my faith ... so I resolutely continued my glioblastoma google fast.

Then, in September of 2008, seven months after our first meeting with that doctor, we met with him again. This time, he gave us the news that Hannah's cancer had returned, in the form of multiple tumors on her brainstem and spine. With tears in his eyes, he explained that Hannah had less than a five percent chance of survival with this recurrence.  As we drove home from that appointment, I decided it was time to google, and shortly after we arrived, I sat down at my computer.

Here's what I read on Wikipedia:

"Glioblastoma Multiforme (GBM) is the most common and most aggressive type of primary brain tumor in humans. Despite being the most prevalent form of primary brain tumor, GBM's occur in only 2-3 cases per 100,000 people in Europe and North America.

Glioblastoma has a very poor prognosis, despite treatment consisting of craniotomy with surgical resection (removal) of as much of the tumor as possible, followed by concurrent or sequential chemo therapy, radiation therapy, and symptomatic care with corticosteroids. Other than the brainstem gliomas, it has the worst prognosis of any CNS (Central Nervous System) malignancy.

It is very difficult to treat glioblastoma due to several complicating factors:

* The tumor cells are very resistant to conventional therapies
* The brain is susceptible to damage due to conventional therapy.
* Many drugs cannot cross the blood-brain barrier to act on the tumor.

Common symptoms of the disease include seizure, nausea, headache; the single most prevalent symptom is progressive memory loss, personality changes & neurological deficit.

Symptomatic therapy:
Supportive treatment focuses on relieving symptoms and improving the patient's neurological function. The primary supportive agents are anticonvulsants and corticosteroids.

* Historically, around 90% of patients with glioblastoma underwent anticonvulsant treatment, although only about 40% of the patients required this treatment. Recently, it has been recommended that neurosurgeons not administer anticonvulsants until a seizure occurs.

* Corticosteroids, usually dexamethasone given 4 to 10 mg every 4 to six hours, can reduce edema (swelling), diminishing mass effect and lowering intracranial pressure, with a decrease in headache or drowsiness.

Prognosis:
The median survival time from the time of diagnosis without treatment is 3 months, but with treatment survival of 12-24 months is common. Death is usually due to cerebral edema (brain swelling) or increased cranial pressure."

Not too encouraging.  "Well," I thought, "Everybody knows Wikipedia is not a dependable source of information" .... so I searched and searched and searched for something else, something positive about glioblastoma multiforme. You know what? There is nothing positive about glioblastoma multiforme! So I searched for treatment options and treatment centers. Basically all of the major cancer treatment centers were using the same protocol our doctor had recommended for recurrence ... additional radiation treatments (tomotherapy this time) and an Avastin/Irinotecan chemotherapy combination, along with steroids to keep brain swelling under control. Then I looked at the cure rates for these centers, and I found that there were no cures. Treatment generally extended patient's lives, but no one survived long term.

I continued my search for something a little more positive.  Eventually I found a site called "Young Adults Surviving Glioblastoma", and I thought, "Finally...Something encouraging!" And it was encouraging, at first. The home page was full of pictures of vibrant, smiling, healthy-looking young adults in a variety of settings ... riding bikes, climbing mountains, or surrounded by friends and family. I read their stories and rejoiced in how well they were all doing. And I thought, "That will be Hannah. We can put her on this website someday." Then I clicked on another page on that same site, and my hopes came crashing down. This page was full of obituaries ... for all of those healthy-looking young people I had just been reading about.

When I finally stood up from the computer, my world had been completely rocked. For several days, I was shaken to the core. For the first time, I understood that Hannah had been diagnosed with what is basically a terminal cancer. What does a mom do with this kind of information?

Gradually, I came to the realization that nothing had really changed. Sure, I had more knowledge about what we were dealing with, and it wasn't good, but that didn't change the fact that God was in control. It didn't matter what the research showed; it didn't matter what the cure rates were; it didn't matter that there were so many obituaries on that website ... Hannah's life was securely in God's hands, and He knew the number of days He had planned for her. And no matter what her future might be, my job as her mom was to trust Him ... the One who loved her even more than I did. And when I released her back into His hands, the peace returned.  It wasn't easy, and it wasn't a one-time deal. I had to consciously choose to trust Him, often many times a day, with what was happening in our lives. And He was faithful ... giving a peace that passed all understanding even in the midst of excruciatingly difficult circumstances.  For that I will always be grateful.