He’s been a Wild Thing and a ghost from Beetlejuice, a Renaissance peasant child and he’s learning to sword fight. Grayson Kleinknight, 7, is also learning, along with his family, how to battle Acute Lymphoblastic Leukemia.
“I learned the most important move in winning,” said Grayson, referring to sword fighting. “It’s to never make the first move.”
ALL made the first move with Grayson’s March 4 diagnosis, but within a week Grayson’s 4H club, the Shingle Springers, had set up a blood drive and a donor club for Grayson with Blood Source, and the Buckeye first grader had already had three rounds of chemotherapy. On April 7, Rolling Hills Middle School Vice Principal Dustin Haley shaved his head for Grayson and the school’s students raised $2,000.
Parents, Curtis and Tristan, are overwhelmed, both by the steep learning curve of the disease and by the amazing support from family, friends and social networking. Tristan, Rolling Hills’ school nurse, handles the medical details while Curtis, a sub-contractor for PG&E, takes care of the homefront. Friends and family are trying to fill in any gaps.
Grayson, now home from the hospital, has to stay away from places with large numbers of people as his immune system is fragile. Being indoors for an active boy, especially one who loves exploring nature and collecting plants with his father, is tough, but doing schoolwork, playing with a miniature trebuchet sent by a Renaissance Faire friend and making videos with special effects on an iPad mini is helping.
Younger brother, Redden, turned 4 this month and deciding on a birthday gift to make his brother happy also occupied Grayson’s time. “He’s going to have to be the big brother now,” said Grayson, “because I’ve got leukemia.”
“We knew there was something wrong because he’s only been sick once in his life,” said Curtis. “Then, when the flu season started around Thanksgiving, he would get sick and then he’d get better and then he’d get sick and then get sick again.”
The Kleinknights took their son to Marshall Hospital and Kaiser in Roseville, but blood tests showed nothing. “Then he complained that his stomach bothered him when he was active and his legs began hurting. We were told it was growing pains, but we took him back to the hospital,” said Curtis. By chance, a lab tech noticed a blast cell in Grayson’s blood sample.
“Usually, by the time kids are diagnosed with ALL, all of their bone marrow has become cancerous and they go directly into ICU,” said Curtis. “But Grayson still has 40 percent good bone marrow, so we feel lucky.” The two-to-four-week stay in the hospital for chemo and recovery predicted by the doctors was less than one week as Grayson weathered it well.
How ALL is treated depends on a number of factors, but for now, chemotherapy is on Grayson’s road map. Whether a bone marrow transplant will be necessary is unknown at the moment, said Curtis. “We feel horrible that we didn’t catch this sooner, but the diagnosis completely floored us,” Curtis said.
After Curtis and Tristan learned that Grayson is eligible for a Make-a-Wish wish, Grayson said he only had one wish: “Peace for the world.” His wish seems entirely possible to Grayson after hearing about Batkid, whose Make-a-Wish was to be a superhero and save San Francisco.
“I’m willing to lend a helping hand or be good company, too,” said Grayson. His second wish if world peace isn’t in Make-a-Wish’s capability? “I want people to give blood to help people like me, with leukemia and cancers,” he said.
Grayson may or may not need blood right away. An April 8 blood drive collected blood and blood products such as platelets, plasma and red blood cells for Grayson and others who need it. Donors can make an appointment to donate blood products in Grayson’s name with his account number 0276 at a BloodSource location.
“We’re trying to get people to do the cheek swab and register in the Bone Marrow Registry,” said Curtis.
If you would like to make a financial donation to help with the Kleinknight’s medical expenses, an account has been set up at giveforward.com until the end of April. Follow Friends of Grayson Kleinknight on Facebook.