Saturday, September 18, 2010

Googling Glioblastoma

The day we returned to Arkansas Children's Hospital to have the sutures removed after Hannah's brain surgery, 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." After hearing what all that treatment would involve, we left there that day, and went to eat at Firehouse Subs in Little of Hannah's favorite places.

We ate in kind of a daze, not even tasting our food, discussing what we had just heard. The three of us 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 Ted Kennedy is getting it, 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 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 at this point. After absorbing that devastating news for a few minutes, we left his office and headed home. As we drove home, 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.

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."

"Well," I thought, "Everybody knows Wikipedia is not a dependable source of information" 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. Almost 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 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.

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 young people 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 got 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 a peace that passed all understanding even in the midst of excruciatingly difficult circumstances. He's pretty awesome like that!

I'm not sure why I felt prompted to share all of this tonight. It's definitely back in the "heavy post" category. But maybe God can use it to help someone who's going through a life-threatening illness with a loved one. It's not fact, it's very, very hard...but God will be faithful to see you through it. Trust Him.


Kelley's Kids said...

Your post are always so amazing to read. Thank you so much for sharing that. It's so hard to give it all over to God, but you did, and one day you will be with your beautiful daughter again.

You really are an amazing person, Kelley

Anonymous said...

I lost my daughter, aged 19 on 14th December 2010, 11 months after her first surgery for glioblastoma. I think it's great for you that you have so much faith in God, but I'm afraid mine has been severly tested after losing my Mom, my sister then my only child with 2 years!

NanaLew said...

I found your post to be most interesting and informative. I'm so sorry and I understand what we are up against a bit more as we face the battle against GBM with my 30 yr old nephew. I appreciate what you said about Fear rising up, then how we can settle back on the foundational truth that our loved one's days were numbered long before birth. GBM does not dictate their life span, God and His infinite love and mercy do.

Jill Sullivan said...

I'm so sorry to hear that your nephew has been diagnosed with GBM, NanaLew. Such a difficult disease to battle. But you are so right ... Our days are ordained before we were ever born, and God is sovereign. He knows the end from the beginning, and in His loving mercy, He always does what is right. Thank you for confirming that fact again! ~Jill