Childhood cancer is the leading cause of death by disease for children in the U.S.1 In September, we pause to acknowledge Childhood Cancer Awareness Month and offer our prayers and comfort to the families affected by this condition.
Pediatric cancer is a whole-family diagnosis. The Gunawans are members of the Mission Network family, and their journey is in our minds and hearts.
Martin shares his story in the hope that it may bring others comfort.
My son, Caleb (then age four), had frequent fevers in early February 2017. Doctors originally thought that Caleb had strep throat or a virus that had been prevalent that winter, causing fevers for more than a week. An antibiotic cured the strep throat, but the fevers continued, and Caleb began to experience severe pain in his back.
Following an X-ray at Goshen (Indiana) Hospital on Feb. 27, Caleb was called back for a computed tomography (CT) scan on his back. A CT scan uses several X-ray images and computer processing to create cross sectional images of the bones, blood vessels and soft tissues.
The following day, our family learned the source of Caleb's back pain: a tumor in the adrenal gland above his right kidney. The adrenal gland makes steroid hormones, adrenaline and noradrenaline. These hormones help control heart rate, blood pressure and other important body functions.
After examinations at Riley Hospital for Children in Indianapolis, Indiana, Caleb was diagnosed with stage 4 neuroblastoma, a rare childhood cancer that starts in immature nerve cells. The term "neuro" refers to nerves, and "blastoma" refers to a tumor of immature or developing cells.
During the next six months, he underwent six rounds of chemotherapy treatment at the Memorial Sloan Kettering (MSK) Cancer Center in New York, New York, to stop or slow the growth of the cancer cells.
The journey through pediatric cancer is not fair. We have often missed life's precious celebrations with family and friends, like those on Christmas Day, New Year's Eve, Thanksgiving and the first day of school.
In this journey, God has been everything for my wife, me and our three children, even through the hardest news and experiences. I can't explain it, but there is a very tiny peace in my heart and a very small voice that says, "Caleb is going to be OK."
Caleb was declared to have "no evidence of disease" (NED) in early March 2018. The term NED is often used with cancer when there is no physical evidence of the disease upon examination or in imaging tests after treatment. No evidence of disease means the same thing as complete remission or complete response. It does not, however, mean that a cancer is cured.
The day after Christmas 2018, we learned Caleb had relapsed. A team of doctors found neuroblastoma cells localized on the back of his skull. Caleb had to do more chemotherapy, radiation and immunotherapy. There is no protocol for relapse and treatments are much more intense.
Joshua 1:9 (NASB) is our stronghold, which has carried us through these past few years: "Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the LORD your God is with you wherever you go."
Later, he was again declared NED, but he relapsed for the second time in December 2019. From the meta-iodobenzylguanidine (MIBG) scans, doctors found a new spot in the skull bone, about an inch below the first relapse spot. Just like the first relapse, there was no protocol to use. It was up to MSK's team of doctors to decide what treatment we would try. Only by the power of God, Caleb continued to defy the odds and respond well to the different treatments.
In August, Caleb was given an IV for blood work and an MIBG scan to continue monitoring his health. MIBG is a nuclear scan test that uses injected radioactive material and a special scanner to locate or confirm the presence of neuroblastoma. Thank the Lord that Caleb, again, is considered NED. He is scheduled for his fifth neuroblastoma vaccine shot this month. Our prayer is that God will continually use Caleb's life for God's work.
"It is only because of God that I can be here, standing in front of you. My strength only comes from God." — Caleb Gunawan, during a worship service at College Mennonite Church in Goshen, Indiana.
Caleb told me, "I wanna be an MRI or MIBG technician because it is so cool that they get to see the inside of your body. I also want to make a MIBG scan, where you can cross your legs, turn your head — where you can move your body!"
Now, at the age of 10, he has undergone countless procedures, chemotherapy, surgeries, radiation and immunotherapy treatments.
These past six years, our family has endured some of the worst experiences that a family could have, but we have also found happiness and blessings. Our daughter was born while Caleb was in one of his chemo regimens, and she has been a joy to our family. We have been able to celebrate many birthdays. And we have known the love and support of God, friends, family, colleagues and strangers. There have been a lot of instances in which, even in the midst of sorrow, God picks us up.
Yesterday is in the past, tomorrow is not guaranteed and today is present. Always remember ... "Be strong and courageous! ... for the Lord your God is with you wherever you go" (Joshua 1:9 NASB).
You can read Caleb's full story and updates here: Caleb | CaringBridge and follow on Facebook
1 Children's Cancer Research Fund (childrenscancer.org)