Honored Kid

Jacob N.

Age 5
Jacob N. Kid Photo

Location

Olivette, MO, US

Diagnosis

Acute lymphoblastic leukemia (ALL)

Date of Diagnosis

January 2017

Status

Cancer free

Treated At

St. Louis Children's Hospital

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My Story

I just couldn't kick the fever. For two weeks it was the same story: Get a fever...go to the doctor...be told it's a virus (or ear infection)...get some medicine...be OK...get off the medicine...get a fever...rinse and repeat. Then on Monday, January 30, we were in the doctor's office and about to leave with another prescription when my parents asked if the doctor could look at my stomach because it looked larger than normal. It turned out that my spleen was enlarged, but everyone thought it was likely mono, which we all thought was bad, but still something we could manage. An ultrasound that morning confirmed the enlarged spleen and also an enlarged liver. All we needed were the blood test results to confirm it. That afternoon, we got the call. My white blood cell count was way off. It's likely leukemia. We need everyone to come to the hospital. And like that, everything changed forever. Fast forward to today and I can't remember what life was like before I was diagnosed with ALL. There have definitely been some difficult days...50 nights in the hospital...13 lumbar punctures...being stuck in my hospital room for a month because of a virus I couldn't shake...4 weekends wearing a catheter...steroid rage...extreme weight gain...learning how to walk again...getting pulled from daycare...missing my classmates...and losing my hair after Labor Day. But there have been some good moments as well...the overwhelming love and support from friends and family...a crazy number of stuffed animals...getting to know so many wonderful nurses and doctors who are there for me day and night...watching fireworks from the hospital window on July 4...hour after hour of Mickey Mouse Clubhouse while in my hospital crib...my parents and grandparents always being there for me and loving me so much that they'd cry several times each day I was there in February...welcoming my baby sister on Labor Day (my mom found out five days before I was diagnosed)...being told I was in remission. I know I have a long way to go as I'm (fingers crossed) entering maintenance in a few weeks. I've then got almost three years of monthly visits, two dozen lumbar punctures, more steroids and countless oral meds before I'm officially cancer free. But as tough as this road has been for me and my parents, it pales in comparison to what I've seen so many of my friends in the hospital have had to go through. Some have been there for months, some are waiting for bone marrow transplants, some will never be the same again, and one friend didn't make it. In other words, no child or parent should have to go through this. Every patient and every parent I've met goes through an incredibly painful emotional rollercoaster. While I have every intention of beating this, I know it's made a permanent impact on my family, both good and bad. That's why I'm proud of my dad for joining the St. Baldrick's team this month. He told me from the start that once my hair would go, his would go too. He wants to make sure I realize that it's OK to be different, because he, my mom, my sister, my grandparents, my family and my friends, are all in this together no matter what. And we want to do everything possible so that one day, cancer will never be a concern for any child or parent again.

The Childhood Cancer Ripple Effect

Who's Honoring Me

Help kids take childhood back from cancer — support lifesaving cancer research today.

Children who are fighting or have fought cancer inspire others to be part of the Foundation's mission — to support the most promising research to find cures for childhood cancers and give survivors long and healthy lives.

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