The Elf on the Shelf scene at the Bohbrink household resembled a classroom: Santa teaching, with the Elf and Nativity characters gathered around a list of four lessons.
“Jesus is the reason for Christmas,” the list read. Also, “be kind,” “listen to mom and dad,” and “know that you are loved.”
The last lesson is one that even mom and dad, Jenise and Brent, are working on, too.
Since learning of Jenise’s cancer diagnosis in late summer, the outpouring of love they’ve experienced has been overwhelming.
[sc:text-divider text-divider-title=”Story continues below gallery” ]“I don’t like that attention. It’s very hard to take that,” Jenise said.
“Everybody keeps telling me on the flip side, ‘Jenise, you’re the one that gives to people. … How does that make you feel, being the giver? We want to help you. You’ve got to suck it up, let people do for you.’”
Jenise, 37, is the kind of friend who sends notes just to say she’s thinking about you. She’s always asking how she can help, even when she has plenty of work on her own shoulders.
She volunteers with the Brown County Literacy Coalition and its Dolly Parton Imagination Library free-book program. She teaches Sunday School at Nashville United Methodist Church and helps with the Brown County Weekend Backpacks food program. A former Purdue Extension educator, she now works part-time as a development and program assistant for grant-making organization, the Brown County Community Foundation.
“She’s just a special, special person, older and wiser than her years, in a very positive, complimentary way,” said church friend Jan Greenlee.
“I just think it’s so cool that us 60-year-olds are seeing her as a role model when she’s half our age.”
For four months, Jenise has been fighting a “rare and aggressive” form of non-Hodgkin’s lymphoma of which there are only about 100 known cases.
Cancer wasn’t a diagnosis she or her doctors expected back in February when she complained about red, hard spots on her legs, like bug bites. When the family went to Florida for spring break, the spots turned bright red, like a sunburn.
A dermatologist prescribed her a steroid, which made the spots disappear. But when the medicine left her body, they came back, which prompted a biopsy.
The first diagnosis was lupus, in which the body attacks its own tissues and organs. But blood work didn’t confirm that. Instead, she was told she might have Lyme disease and was put on a different medicine. Then, two days later, doctors ordered another biopsy and more blood work.
The results deadline in early August came and went. Finally, the office called on the Friday of Labor Day weekend. She needed to come in to hear this diagnosis, and it might be a good idea if she brought someone with her. Jenise and Brent were there within a half-hour.
“She said, ‘You have primary cutaneous gamma-delta T-cell lymphoma,’ like, blurted it all out. … She said, ‘I’ve only ever seen this in my clinicals. I’m not comfortable treating this, so I need to send you to a specialist in Martinsville.’
“Brent and I are staring at the write-up they give you, like, ‘You know what lymphoma is?’ ‘No.’ Literally, I’d heard of it, but I don’t know what that is.
“She came back in and said, ‘Do you have any questions for us?’ and I’m like, ‘Yeah, what’s lymphoma?’ And then she said, ‘You have a rare and aggressive cancer.’ I kept going, ‘OK. OK. So what does this mean? What do we do next?’”
This cancer isn’t genetic and it isn’t environmental, Jenise said. The oncologist told her there’s nothing she could have done differently; it just happened to be how those cells in her body came together and stuck.
Even though it’s a lymphoma, the cancer is not in her entire lymphatic system. It was caught at Stage 1, so it’s only affected some lymph nodes in her legs, Jenise said.
It couldn’t have been detected in her earlier blood tests because it doesn’t show up that way, she said. It sticks to the cutaneous layer of the skin above the muscle.
“My first thought was, ‘It’s on my leg; let’s cut it off,” Jenise said.
Yet, it’s not a skin cancer either, like melanoma, Brent said. That meant it couldn’t be cut out.
The dermatologist referred them to oncologist Dr. Danielle Doyle at IU Health Morgan in Martinsville. In the meantime, they were told not to Google this diagnosis.
“We made it out to the car and I was in front of the garden Googling it, sitting in the car Googling it,” Jenise said.
“It was a quiet ride back.”
There isn’t a lot of research on this particular type of cancer or methods of treating it, and every person, every case is different, Jenise said. For a planner like her, this was “terrifying.”
“I know several times we’d ask each other, ‘What are you thinking?’ and we couldn’t answer,” Brent said.
They decided to keep it quiet — not even telling their children, Averi, a kindergartner, and Owen, a preschooler — until after their birthday parties on Sept. 22. Plus, there was so much going on that month — the community foundation’s 25th anniversary gala and the children’s book program benefit golf outing, both of which Jenise was heavily into planning, and a surprise 40th birthday party for Brent as well.
“I have said since the start of the year, September is going to be awful. … Now it’s just like 150 times worse,” Jenise said.
The first visit with the oncologist the following week altered her plans again. Chemotherapy would start on Sept. 17. She’d have six rounds, three weeks apart.
They sat Averi and Owen down on the floor, “and we just straight-up told them, ‘Mommy has cancer. But, you know what? We’re going to trust in God, and he’s going to get us through this, and we’re going to get Mommy all the medicine that I need, and we’re going to get Mommy taken care of and we’re going to beat this,’” Jenise said. “’This is just going to be a bump in the road. Things aren’t going to change much. We’re going to keep things as normal as possible, but we’re going to get Mommy what she needs.’
“(Averi) crawled in my lap and whispered in my ear, ‘Mommy, are you going to die?’ And we just said, ‘God’s got this. God’s going to take care of this.’”
That weekend, they drove to Danville and Fort Wayne to tell each of their families in person.
The same week, Jenise told her co-workers. She couldn’t handle the projects she’d worked so hard on because she didn’t know what her treatment would demand of her.
“It was hard for me. That’s been one of the biggest things I’ve learned through this is giving things up. … As much as I like to have control of things, I’ve just had to let them go. I’ve had to allow other people to do things. … I hated giving up.”
What she saw as “giving up” became opportunities for other people to give back.
Quite honestly, managing all those offers of help was a challenge, especially at the beginning. “They were taking 10 steps ahead before we were. It’s like, we need to be the ones taking the first steps,” Brent said.
One of their goals throughout treatment was to keep life as normal as possible for the kids, and having a steady stream of people in and out of their home wasn’t going to do that. Plus, they didn’t need anything, Jenise said. She’d only asked anyone for prayers.
Discreetly, in October, Nashville United Methodist put together a “love basket” holding small gifts of encouragement for everyone in the family, which they could open as needed. The one stipulation was that Jenise couldn’t write any thank-you notes, as she is prone to do.
“I’m still opening gifts,” she said.
People have been eager to help because of the kind of person Jenise is, Greenlee said.
She first became aware of Jenise when Jenise was heading up to communion one Sunday “and she just handed me her baby, and she didn’t even come back for it,” Greenlee said. “… Just that kind of trust, ‘Here, here’s my most precious possession,’ it was such a caring thing to do.”
When their pastor celebrated a birthday, the goal was to do something nice for someone else involving the number 60, like donate $60 to a charity. Even though she was working and taking care of two young children, Jenise chose to send 60 personalized notes to people, which her kids helped make, Greenlee said.
She still has hers on her bulletin board: “Sending you a smile to brighten your day.” “And I thought I was the only one who got one, but she had done 60 of those. How sweet is that?” she said.
Three or four other cards now come in the mail for Jenise every day, some from people she’s never met, from around the country. One woman writes her poetry daily, Brent said.
Whenever either of them needs a break in their schedule, their employers are quick to provide it. Brent is an Indiana conservation officer.
“We’ve made it work,” Jenise said, comparing going through treatment to kind of like having a newborn baby. Sometimes, she has to push through and get things done, and other times, she knows she needs to stop and take a nap.
Other than the fatigue — and losing her hair, which was hard — cancer hasn’t been hugely visible in their lives or the kids’, the couple said.
When her hair started falling out after her first chemo treatment, Jenise chose to shave it all off, and she wanted the kids to be part of it. Averi refused.
“She had the hardest time with it, a little girl seeing her mommy have to shave her head, losing her hair, so that was hard to see. And neither of them like to see me with my bald head,” Jenise said.
She received a free wig and other resources through the IU Health Olcott Center. Greenlee, a fellow cancer survivor, offered her another wig, plus some help getting her other wig to fit and look the way she wanted it to.
“Once you announce you have cancer, it’s like those who have experienced it know exactly how to help you and what you need,” Jenise said.
Another fellow survivor reached out to say she wasn’t going to treat her any differently; if she needed something, anything, from her, just tell her and she was there.
“That was huge,” Brent said, of simple messages like that. “It lets you know you’re supporting her, but that you’re not overwhelming her with other things and wants and needs.”
“Now that I’m on this side of it, I want to do the same thing that she did,” Jenise said.
Jenise has kept friends and family updated through posts on a blog. On Nov. 20, she announced the best news yet. A PET scan, which shows “hot spots” of cancer in her body, came back almost completely clear.
“It took awhile for that to set in,” she said.
Her last round of chemo will be Dec. 31. After that, she might undergo a stem cell transfusion in an effort to clear any remaining cancer cells from her body which might not show up in a PET scan.
If she’s approved for that treatment, she’d undergo daily injections which would kick her own stem cells into her bloodstream, then be hospitalized for about three weeks while a machine cleans them from her blood, fresh stem cells are inserted, and her immune system is brought back up. It’s not known if that treatment will work, but it would be one more thing she could do to kick cancer forever.
From the very beginning, when they told the kids she was going to beat it, “I don’t want to sound cliche, but I had a peace with it, like, God gave me the peace I needed. I was OK with it. I was scared, I was worried, but I knew that I was going to be OK,” she said.
In the warm glow of their Christmas tree, she snuggles Averi, then tickles Owen, to shoot a family photo the way the kids suggested: Without her hat on and without a wig, with Brent’s equally hairless head beside hers.
“God, thank you for another beautiful day in keeping us safe and healthy,” she prayed over dinner that night, “and please watch over those who need your healing touch and your loving hug.”
“I’m not battling it,” Jenise says about her cancer. “I’m beating it. … Like, there’s no battle. It doesn’t have a chance.”
