By Jillian Risberg 

A 14-year-old boy who defeated acute lymphoblastic leukemia has partnered with his mom Mandi to give back to the community who stood by his side in his decade-long fight. 
 

Jacob Grimes is on the quiet-side, loves kid things, being with his family and new baby brother. 

But his early days were far from peaceful.   

“I think his 10-year battle was enough spotlight for him, so he tends to shy away from spotlights,” says Mandi Grimes. “He’s a normal kid, just didn’t have a normal childhood. Jake spent most of his life in hospitals.”

So Mandi and Jake launched Surviving Hope, to give back to all who helped support his 3.5 time cancer journey, ready when others need assistance. 

Struck with a sudden life-threatening or altering medical crisis that requires three+ months treatment, Surviving Hope will aid monthly household bills. 

According to Mandi, when the charity is notified of a family in need… (they are also starting a “Good Neighbor” program for child care, pet care, lawn/household duties), it will send neighborhood fliers (never discloses the diagnosis or personal information) — only that Surviving Hope is helping a neighbor. 

And Mandi hopes to recruit volunteer coordinators for meaningful events the charity plans to do annually.  

“I would love to have people’s support and want to help build this empire that doesn’t currently exist,” she says. 

Be part of a team that can send families hope, when it feels far away.

“Ever receive a hug that felt good, maybe you held on a little longer, or triggered a cry, or felt rejuvenated,” says Mandi. “Simple kindness to families swarmed with kindness can help give that same feeling.”

In the thick of Jake’s illness, Mandi’s life (relationships, financial, education) struggled.

“To be 4.5 years post transplant; Jake is healthy, my relationships are rebuilt and better than ever, we own a home, and he became a big brother March 2019,” she says. 

Their past difficulties vs today — is an inspirational story of survival. 

As a single mother, full-time college student — Mandi was denied assistance programs because medical quantified a “healthy” parent of a sick child.  

“There were many obstacles I had to go through. I started making notes in 2011 (and kept it up), that one day when I can I’m going to ‘fix’ this,” she says she survived because of the selflessness of others. “Good people that put effort into helping Jake and I. So, it was always on my mind, ‘how can I ever give back to all (those) who helped me?’”

Although she is not looking forward to other people having a medical emergency, she knows the great support she received from strangers helped. 

“Praying for Jake was all I needed to hear, and I wasn’t a religious person,” Mandi says.

And she wants to have a team ready to support people facing death.

“It’s needed (but) doesn’t exist,” says Mandi. “I often use the analogy of Red Cross is known to respond to every natural disaster; I want Surviving Hope to be at every medical crisis.”

Her son’s illness was an education for Mandi.

Those years she was in and out of college for nursing — managing Jake’s treatment and constant hospital and setbacks, she learned medical through real, hands-on circumstances. 

He was 20-months-old when they found out he had leukemia. He finished treatment days after his fifth birthday; only to relapse five weeks later, according to Mandi. He finished that treatment September 2015 and six weeks later was told his cancer returned, again. 

It was actually a virus that attacked his immune system and eye. After multiple eye surgeries, and more antiviral (toxic) therapy, he was left with permanent vision damage and partial vision loss. 

“Summer 2016 was the first time since his day one he was not on any toxic therapies,” says Mandi. “One year later Jake relapsed, a third time. We needed a bone marrow transplant.”  October 11, 2017, Jake received his only chance for a cure, an unrelated bone marrow transplant.  

“College, a demanding nursing program and anxieties of keeping Jake protected — I made my sad decision to walk away from nursing school,” she says. 

And his mother’s love never waned, she saw the young boy through the darkness.

“I NEVER left Jake,” says Mandi. “I was there for every single poke.” 

She took the mama bear role, blocked unnecessary examinations and managed medications. The two discussed how to handle procedures.

She says any time he cried, she cried. 

“I whispered in his ear how brave he was, how much I loved him. I was known to challenge a doctor or staff member if I didn’t think something was right,” Mandi says Jake’s oncologist was impressed with her mother’s intuition. “Sometimes, it even scared me how dead on I was, felt more pressure — whether I listened to my gut or fears, not knowing which one was right.”  

She struggled with PTSD after every parent’s nightmare and has no idea how she managed, admitting: “If someone told me this was my future, I would’ve crumbled and cried. But I didn’t. I cried with Jake, or in the shower so he didn’t see my breakdowns.” 

As terrible as it was, they cherish their mother-son bond, having spent more time together than most of these relationships. 

“All the hospital times we played and pranked the staff. When you go through such drastic life changes, it either makes or breaks you,” says Mandi. “It made us.”

Cancer leaves you no choice but to grieve — for your life as you know it is over.

Even after treatment, Mandi says she’s afraid. His cancer came for Jake three times. 

“I often say I don’t trust tomorrow… Jake does.  He sees and believes his cancer is behind him and hasn’t expressed concerns of the storm coming back,” she says. 

According to Mandi, there’s not much advancement on the pediatric cancer front. But immunotherapy has opened a new era in cancer treatment.

“Jake’s bone marrow transplant was a new study that removed donors T-cells. It limited a painful graft vs host disease, a serious complication of a transplant,” she says. “Jake’s transplant went smooth — introducing his new cells to his body.” 

For a decade+, Jake spent with a weakened immune system. His 2017 relapse sent them back into isolation/medical restrictions. By the time his immune system was fully recovered (graduated to survivorship) the world shut down.   

“It was hard for me to witness people who crumbled at the fear of COVID,” Mandi says 10 years fearing death she knows no-one has tomorrow promised. “So I wanted to get back out there again.”  

She and Jake were careful traveling during ‘risky’ times, and many wanted to help the boy. Companies opened early for private visits, restaurants allowed them to dine in closed areas to limit exposure.  

Mandi just had to find all the kindhearted folks and said it wasn’t hard when she explained their situation. 

They got a mental “reset” and could return to treatment with a clear head, happy memories and planning their next adventure.  

“Many times I didn’t know if my baby boy was going to make it to his next birthday,” says Mandi. 

“Hospital life was not the life I wanted for my child,” she says she had to find strength to make the best of what they had. “For this, Jake taught me to live life.”  

To learn more, visit www.survivinghope.org or contact givehope@survivinghope.org.