Grayson Bray Morris

(This is the start of the journal.)

Glioma, Glioblastoma, Gliomatosis, Oh My

7 Nov 2006

My eldest child has a brain tumor. In fact, she has several probably cancerous areas spread throughout her brain: one very large ball in the right hemisphere, and smeary areas elsewhere. We don’t yet know exactly what she has, and making a diagnosis has turned out to be hard.

Her neurologist describes her situation as “atypical, unusual, and baffling.” Her presenting symptoms (weakness on her right side, known as hemiparesis) and initial MRIs and spinal tap led to a tentative diagnosis of multiple sclerosis in early October. When her symptoms didn’t improve after steroids and physical therapy, another MRI led to a biopsy. A week’s staining and staring at the extracted tissue came back inconclusive; now the sample is off to an expert at Johns Hopkins for further study.

From Himalayan Peak to Appalachian Slope….Maybe

8 Nov 2006

The neurosurgeons and neuropathologists discussed my daughter’s case again today:

The feelings amongst the group are that this is a high grade tumor, but the origin or type is still unknown. Everyone agrees that it has defied any usual patterns that we know of. The pathologist does not think it arose from the glia, thus it does not look like what we call a glioma, or even gliomatosis cerebri. “High grade” means that it is aggressive, in that the cells are dividing and growing out of control. This is very uncharacteristic for gliomatosis. It usually means it will be more amenable to treatment, if the cells are growing fast.

Based on this information, I’ve gone searching the ’Net again, and here are my candidates (almost entirely unfounded; I’m no doctor) for what she has:

My daughter’s prognosis is likely to be less rosy, since there is more than one tumor site and surgical removal is probably out of the question for some of them.

But there’s a lot of room between these numbers and “dead in 12 months.”

It’s Still a Mystery

15 Nov 2006

The tentative reply from Johns Hopkins is in: they, too, are unable to pinpoint what kind of brain cancer my daughter has. I had no idea this could happen. Once you have an honest-to-goodness real-live sample of tumor tissue, how can you not be able to discover what makes it tick? To lay bare all its secrets?

Clearly I am operating under mistaken assumptions, because the capable doctors at UNC Hospitals and at Johns Hopkins have done all they can, and done it well. I’m just surprised. Astonished. I had no idea. I wonder how often it happens. Is my daughter a supreme anomaly in the world of brain cancer, or is she joined by, say, 2% of her tumorous peers?

In any case, we have to decide on treatment. The tumors aren’t likely to spontaneously vanish.

Radiation and Chemotherapy

17 Nov 2006

Though a definite diagnosis has eluded us, one thing is certain: my daughter (15) has aggressive primary malignant brain tumors. Dr. Berger, the pathologist at Johns Hopkins, grades them as 4+ on a 1-4 severity scale. They are not PNETs or germ cell tumors. The doctors feel they are probably gliomas of some kind. Alas, gliomatosis cerebri is still in the running.

They will not be attempting surgical removal.

She begins 6.5 weeks of radiation therapy next Monday or Tuesday. The doctors are hopeful they won’t need to target her entire head; she may lose hair just on the top and upper sides. (I have to wonder if that’s any consolation to her . . . unless the Roman tonsure comes into vogue.)

She will also receive chemotherapy, either during or after her radiation treatment depending on her side effects. I don’t know if the chemotherapy will finish off what hair she still has. I suppose that depends on the specific cocktail she receives; my grandfather (bone marrow cancer) lost all his hair, but my father-in-law (colon cancer) lost none.

Her stepfather and I are getting flu shots today in preparation for our second trip to see her. I am by nature a reluctant vaccinee, but a little thimerosal and aluminum in my system seems a small price to pay: in exchange, I’ll know I did what I could (and what was asked of me) to protect her compromised immune system.

Craniospinal and New Chemo Drugs

18 Nov 2006

The written report from Johns Hopkins arrived yesterday. My daughter’s tumors have the radiologic signature of gliomatosis cerebri, but Johns Hopkins felt it could also be supratentorial PNET. The good news is that some people do survive s-PNET. Pretty much no one survives gliomatosis cerebri.

My daughter’s treatment plan has thus changed to follow the s-PNET protocol. She will receive 2 weeks of radiation to the primary tumor site and full craniospinal radiation for the next 4 weeks. (So long to enough hair for even the Roman tonsure.) Her quality of life will be dismal during that time; craniospinal radiation causes anorexia, nausea, vomiting, sore throat, and swallowing issues. But the radiologist says this is her best shot treatment-wise.

Chemotherapy will start after Thanksgiving. She will receive Vincristine instead of Temodar (the choice before the Johns Hopkins report arrived).

My husband and I spoke directly with the radiologist last night. He was very straight up about my daughter’s prognosis. I really appreciated that. I’ve read enough to know she has little chance of surviving long. It’s comforting to hear her doctor confirm that: it’s so hard not knowing. Reading doom and gloom, but hoping you’re reading the wrong things. Unsure whether to be as frightened and sad as you are. Unable to come to terms with her disease, because you aren’t sure you have the right information.

Quality of Life and Hard Decisions

20 Nov 2006

My daughter has four parents. Her father and I divorced when she was 2. We are both remarried to wonderful people who love her. She lived with her stepfather and me until she was 12, moving with us from the US to the Netherlands when she was 10, then returned to the US to live with her father and stepmother.

Her life hasn’t been an easy one. She has a diagnosis of Asperger syndrome and a tentative diagnosis of borderline. She is a very difficult person, through no fault of her own. Some circuit never got connected for her, something didn’t develop as it should; we don’t know exactly what happened. But she has worn out the people who most love her, and burned a lot of bridges behind her.

Now this. It seems unreal. How can so much misfortune strike a single life?

She’s 15. At that age, you’re old enough to understand death. You’re mature enough to hear the truth about what’s happening to you, and what your odds are. And I believe you have the fundamental right to decide what your treatment will be.

But our daughter is only 15 physically and mentally. Emotionally, she’s closer to 3. We four parents feel she might never fully understand her situation. She has the right to hear the truth. But can we be sure she truly understands the decision she’s making? If we proceed with the craniospinal radiation and chemotherapy, her life will be a living hell. She will want to stop, will probably beg us ceaselessly to make it stop. But does she really want to stop, to give up and accept death sooner rather than later?

We parents have been asking ourselves and each other if treatment is even the right path. Her prognosis is dismal. Are a few extra months wired to the gills in a hospital, with a pulse but not much else, worth the torture? Is that truly better than spending half as long in full possession of your mind and body, perhaps even out in the sunshine eating ice cream and feeling like a person instead of a disease?

After surgery removed the entire cancerous section of his colon, my father-in-law had preventive radiation and chemotherapy. Compared to what my daughter will get, it was baby stuff. He didn’t get sick; he didn’t lose his hair. He certainly didn’t lose half his IQ, become infertile, and end up with a broken metabolism. He was just very tired. And he knew that he was almost certainly going to live out the rest of his natural lifespan.

He told us last night that despite its relative mildness, he had a very hard time summoning the will to keep doing his treatment. His arms burned like the devil for days after each chemo session. Even now, a year later, he has residual problems in his hands and feet.

And his treatment was a fraction of what my daughter will endure.

My father put it well: it sounds like a treatment you might survive but wish you hadn’t. And for what gain? 14 months of constant hell instead of 3 months of gradual decline? Those are the statistics. It doesn’t sound too hard to me. But here’s the kicker: can we be certain she won’t be one of the miracles her doctors have treated, like the boy who beat the odds and is now a medical resident? Or the woman who beat the odds 23 years ago and is still going strong? Who knows; my daughter’s miracle may even include closing the circuit, completing the development of whatever went wrong. She might be healthier than before. Who can say?

All we have are the odds. And the odds are grim.

Relief, and a Thrill of Hope

21 Nov 2006

Last night we four parents had a conference call with our daughter’s primary doctor. My husband and I had prepared a slew of questions:

As it turned out, my need for answers vanished two minutes into the call: my daughter wants to fight for her life. Yes, she understands her odds; yes, she understands how ill she will become. She understands that even then, she may still die. And yet she wants to fight.

It no longer matters whether treatment is horrible, side effects are permanent, the outlook barely changes. She wants to do it. She is prepared to endure the nastiness. She chooses to fight for the miracle, the 5%, the lucky break.

The immense relief that suffused me upon hearing this surprised me. I hadn’t realized how heavily making this decision for her weighed on me—on all of us. But what surprised me more was the hope. I still know she’s unlikely to make it—her doctor said her chances are much less than 50-50, and her tumor is “very worrisome”—yet I’m buoyed by her choice.

Suspense

22 Nov 2006

I’m desperate to know how my daughter’s first radiation session went yesterday. How does she feel?

We called last night as usual (midnight our time, to catch her at 6 PM her time) but didn’t reach her. We texted (“how did it go? We love you and we’re thinking of you”) but haven’t heard back.

It’s far too early to call her now; we’ll wait another four hours or so.

Resolution, Part I

22 Nov 2006

I got a stranger on the phone when I called my daughter this afternoon. I must have the wrong number, he said; they were admitted last night.

We finally got hold of my ex-husband. Our daughter has been moved to a new room on the oncology floor. He said the radiation session was quick and painless. Through the holiday weekend she’ll be getting tumor-area-only radiation; full craniospinal will begin next week. Chemotherapy begins next week too.

She wasn’t in when we called just now; probably at physical therapy. Her second radiation session will be around 3 PM East Coast time.

Resolution, Part II

23 Nov 2006

We spoke with our daughter last night around 6 PM her time. She sounded tired and a little down. She wasn’t sure how many radiation treatments she’d already had (two), but they were short and they didn’t hurt. She’s not in any pain; she doesn’t feel sick.

Yet, she said. She doesn’t feel sick yet. So she hasn’t forgotten what she’s facing.

We’ll be there in four more days. I wish we were there now.

Another Valley

23 Nov 2006

valley 2 a : a low, gloomy, or fearsome place or situation «the valley of the shadow of death»

We got another middle-of-the-night call last night, this one at a respectable 6:15 AM our time. My ex-husband and his wife had just spent two hours calming our daughter. Her panicky evening calls to them are becoming frequent. The day ends and her visitors leave; she has several hours to get through before her sleep medication arrives. Distractionless hours, full of time to think.

They called because they see her declining. Her memory is slightly worse; she doesn’t remember things they’ve already told her or her radiation session yesterday. She’s having occasional trouble finding her words, which frightens her. She couldn’t remember how to spell excited and exhausted in a text to a friend. She’s noticed changes in her breathing.

None of this is a surprise; she is seven weeks into this—eleven if you count the month before she had her first MRI, when we thought she’d just pulled a knee ligament—and she’s had no tumor-specific treatment before Tuesday. Those are alarming numbers if she has gliomatosis cerebri:

Without therapy, patients with GBMs uniformly die within 3 months.

I can’t find statistics for how alarming they are if she has s-PNET.

I wish we were there now.

Sinead O’Connor

26 Nov 2006

My daughter wants to shave her head. She plans to do it today. Her father surmises it’s one thing she can control in a pretty helpless situation.

She’s going to donate her hair to a program that makes wigs for children who’ve lost theirs. I wonder if she could get her own hair back as a wig. Somehow this idea amuses me.

We’re flying out at 1 PM today. We hope to make the drive from DC to NC in time to see her before her operation tomorrow morning: she’s getting a permanent IV for the chemo.