Typically most people will not choose to become bald; however, Soosan Hall of Norge has done just that. Soosan will shave her head, go bald for kid’s cancer, “shaving the way to conquer kids’ cancer.” on April 7 at Colonial Heritage at a fundraiser to support the St. Baldrick’s Foundation.
St. Baldick’s website defines the group as a “volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives.” Some supporters of St. Baldrick’s volunteer to have their heads shaved to stand in solidarity with the kids being treated for cancer. Along with this, those who are getting their heads shaven ask friends and the community to make a donation “on my head.” Each participant has a goal, and the fundraiser event itself has an overall goal.
Soosan’s 2-year-old daughter Jesse Grace was recently diagnosed with cancer and has lost her hair from chemo treatments.
“When I told Jesse I was going to shave my head she asked why,” says Soosan, adding that she explained to Jesse that way they could grow their hair back together. Jesse seemed to like the idea, but when her dad asked if he should shave his beard, she told him no…that “he wouldn’t be daddy anymore,” if he did that.
Cancer…Stage 3 high risk neuroblastoma, a devastating diagnosis for the parents of such a young, vivacious child. What began with a fever in late September snowballed into a journey no parent would want to see their child take.
It was September 29 and Jesse Grace woke with a temperature of 103.9. At first the pediatrician thought it might be an ear infection, even though she’d had tubes in her ears, but after weeks of flip-flopping back and forth with fever, pain, various symptoms and multiple tests, it became obvious it was much more. But what?
“She was my little bruiser,” says Soosan, explaining how Jesse was the type of child who could run into a wall and bounce off, laughing. “She was born this way for a reason … she’s going to come out of this…I want her to live a normal life.”
With five rounds of chemo already under Jesse’s belt, she has one more round to go and then radiation. She will also have a month’s stay at Children’s Hospital of King’s Daughter around April.
Despite the surgeries, tests, needles, doctors, nurses and hospital stays, Jesse holds her own and actually enjoys going to the clinic and loves to help with sending off her blood tubes. She calls her IV bag “Red Fred” and the blood pressure cup that hugs her little arm “Harry.”
“She has no idea of the enormity of it all,” says Soosan. “Her hair is missing, but she jumps, climbs and runs around like a normal kid…if it happened to any of our kids, Jesse is the only one tough enough to handle it.”
Mike still gets choked up when he talks about the night he had to leave Jesse at CHKD. Soosan was staying, but he had to return home to be with their other daughter Christine, who is only 20 months older than Jesse.
“I can remember when I was getting ready to leave the hospital for the first time, after we found out Jesse had cancer…I didn’t want to leave. She took her hand and put it on my cheek and said, ‘Daddy, I’m going to be ok.’”
And that is what Soosan and Mike hope for: that Jesse Grace will be okay, that she will have a normal life at some point, that all children with cancer will be cured. But for now this is Jesse’s new form of normalcy. She still enjoys watching the original Scooby Doo cartoons as well as Dora the Explorer. She loves being read to, especially stories from the Berenstain Bears. One of her favorite things to do when at CHKD is playing with the big dollhouse. “She’s a free spirit,” explains her mom.
Unfortunately, though, with Jesse being at the stage 3 level, it’s quite a battle not only for Jesse, but for the medical community as well as there is still so much they don’t know about this form of cancer; monies for research are desperately needed. Soosan explains that if they can catch this cancer at stage 1 or even 2, survival rates are much higher than 3 or 4, when they typically discover it. This is one of the reasons Soosan along with friend Heather Harmon are working on the upcoming fundraiser for the St. Baldrick’s Foundation.
Thus far 12 people – including five women – have signed up to have their heads shaved on April 7 from 5 to 8 p.m. at Colonial Heritage. Click here for more info on the event. http://www.stbaldricks.org/events/mypage/eventid/5989/eventyear/2011. Soosan says “shaving my head is nothing compared to what Jesse is going through.”
The fundraising event will include Soosan telling her familiy’s story along with Jesse’s doctor being on hand to answer questions about cancer. Local barbers and hair stylists will donate their time and expertise in support of St. Baldrick’s. The event’s fundraising goal is $5,000. Donations can be made online or by calling 888-899-BALD or by emailing Heather at firstname.lastname@example.org.
You can also read a blog Soosan writes chronicling Jesse’s journey along with updates by clicking here.
Jesse Grace’s dad shared a story about when he first read Soosan’s blog. He’s not really a computer person and hadn’t read the blog, he said, but one day at work found himself telling a co-worker about what his wife was doing. So he pulled up the blog and within minutes he and his co-worker sat there reading it, as Mike was struck by his wife’s words.
“I didn’t realize she had done all of this,” he said, with his voice cracking, adding “all the nights she was on the computer…” Mike admits this is Soosan’s way of coping, saying “She’s been strong for both of us.” Mike says he tends to outwardly show his emotions more, though most wouldn’t expect the bearded, tattooed, Harley riding man to get all choked up like he does.