Evan Wolfe has the bluest eyes, the color of sapphires or a summer lake and, if she could, his mother would never stop gazing into them.
If she could just see them.
If he could just see her.
Evan, his mother says, is like a sleeping baby, eyes always closed, never crying. He is nearly 10 months old, blind, deaf, his body rigid, his skull ribbed with a shunt to alleviate the pressure from a pressing, predatory brain tumor.
It was Evan’s eyes that told Stacy and Jesse Wolfe of Albuquerque in August that something was wrong with him, the son they tried so hard to have, the baby they endured months of fertility treatments for.
Evan’s right eye seemed to veer off, independent of the other. By the time they got in to see a physician, the left eye was veering off as well.
His soft baby skull had grown hard, full, filled with what an ultrasound determined was a significant mass, a tumor more than an inch across, huge in a baby’s head.
Evan
Further testing revealed that the mass was a pineoblastoma, an extremely rare and aggressive tumor lodged near the center of Evan’s tiny brain – too dangerous to be excised surgically, too delicate to be zapped with radiation treatments, given Evan’s young age.
Chemotherapy did little more than prolong the inevitable.
Which was death.
“We were told he had a couple of weeks to live,” his mother said.
But she was not willing to accept that. Deep in her mother’s heart, she knew she could not simply give up. She knew he could, he must, live.
“I cried at first,” she said. “And then I started researching.”
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Help for Evan • Benefit concert 8 p.m.-closing Friday, Launchpad, 618 Central SW, with Rage Against Martin Sheen, Mexican Violence (ex One More Round), 66 Guns, InTOXICated. Must be 21+. • Donations may be made at any Wells Fargo bank to “The Evan Wolfe Foundation in Albuquerque, NM.” Must use complete title as there are other unrelated Evan Wolfe funds. • Donations also being accepted at www.fundly.com/evanwolfe • Read more about Evan at evan011911 on www.caringbridge.com. |
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Talking to Stacy Wolfe, a 33-year-old bookkeeper, is like speaking to a scientist well-versed in oncology, clinical trials and mortality rates.
“I took care of Evan during the day,” she said. “I researched all night.”
She didn’t have time to waste.
What she found was disheartening. In the studies she read on brain tumors in children, none of the patients with her son’s type of tumor survived.
And then she found Baby Sophia, a girl in New York diagnosed in 1996 with a pineoblastoma who was successfully treated at the Burzynski Clinic, a cutting-edge but controversial experimental cancer-treatment center in Houston that promotes the use of antineoplastons, or ANP, derivatives of peptides and amino acids that founder Dr. Stanislaw Burzynski claims act as molecular switches to turn off cancer cells.
Sophia, Wolfe learned, was the only patient with pineoblastoma ever treated by the Burzynski Clinic. She was also the only patient with pineoblastoma treated anywhere, as far as Wolfe could tell, who survived.
Sophia is now 15.
The Wolfes took Evan to Houston on Sept. 5 and were accepted into the Food and Drug Administration-approved ANP clinical trial at the clinic two weeks later. Evan received his first treatment Sept. 16, the ANP injected through a tube in his chest.
Almost immediately, there were complications. Surgeons inserted a shunt in his skull to relieve the pressure from fluids building in his brain. A nasogastric tube was threaded into his nose after he stopped eating enough on his own.
For a while, he stopped breathing on his own.
“Doom and death were seeping in under the door of my mind’s eye. I broke down and started crying, really crying,” Wolfe wrote in her journal. “Suddenly, two words came to mind: Have hope. I thought of those two words and decided that was exactly what I was going to do. I was going to have hope.”
That hope is what has pulled her along on this treacherous journey with her son, through the moment when they realized Evan could no longer see, could no longer hear, no longer cried. Hope has sustained her through the setbacks, the rising potassium levels and falling hemoglobin counts, the harrowing return to Albuquerque, the substantial medical bills, not covered by insurance, that have surpassed $42,000.
Hope is what she holds on to when she looks at the MRI image of the tumor, which is growing. Hope is what she clings to since physicians told her and her husband last week that the treatment does not appear to be working and that they need to start considering “other options.”
Hope gets her by when she cannot see Evan’s beautiful blue eyes smiling back at her.
And here is her request: That you all have hope, too. That you send prayers or positive thoughts to her son, especially every day at 4 p.m. – a random choice – in a concentrated nudge to the universe to save her son.
“I refuse to lose hope,” she said. “In my gut, I feel like he’s going to be OK. I just want people to give him a chance.”
Deep in her mother’s heart, she can still see a miracle.
UpFront is a daily front-page news and opinion column. Comment directly to Joline Gutierrez Krueger at 823-3603, jkrueger@abqjournal.com or follow her on Twitter @jolinegkg. Go to www.abqjournal.com/letters/new to submit a letter to the editor.
— This article appeared on page A1 of the Albuquerque Journal
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