John was our firstborn. He lived a short but full life from June 2011-October 2018. He died painfully because a childhood cancer called neuroblastoma is relentless. He died peacefully because God is good.
When John arrived in our lives, we didn’t have smartphones or wifi. We had each other. John was born via C-section on June 2, 2011, and he didn’t start latching on his mama’s breast consistently until mid-December 2011. On paper, it doesn’t look like much; however, those six months nearly crushed me. Meanwhile, those six months also reinvigorated my faith in God above faith in myself. John taught me time and time again that the grace of God is sufficient.
John was a very good son and friend to me during his first three years of life. We lived far from familiar in Hamtramck, Michigan aka “The World in Two Square Miles.” Hamtramck was our DREAM neighborhood as it’s exceptionally diverse. John helped me meet and befriend women and children from a myriad of cultures and backgrounds with his sweet and charming presence. Hamtramck was also cold and host to some wicked growing pains through which God faithfully consoled us. Because of who John was, my toddler also comforted me like a loving Father. I am always grateful for our hard and holy Hamtramck season.
Michigan was the birthplace of Benjamin and the Beam brotherhood. In June of 2014, 
our John became a big brother. Nothing could’ve prepared us for the way these boys grew to love each other. The highest motivator for my own prayers for John’s healing was Ben. The chief beneficiary of John’s uttermost healing is Ben – our hearts are forever tethered to Heaven, thus, of Heaven, we daily speak.
We decided that it was time to move back to Georgia (our home and current state) in July 2014 due to the d-word (according to most millennials): debt. We now know that the Holy Spirit was leading us nearer to a stronger support system as a cancer diagnosis loomed just beyond our sight.
John thrived as a Pre-K student during the 2015-16 school year. It ought to be said that he was brilliant. John adored reading and he read early and voraciously. He was also passionate about science. He loved anything having to do with animals (zoology) and dinosaurs/prehistoric creatures (paleontology). He hoped to pursue a career in one of the aforementioned fields.
John was initially diagnosed with stage IV high-risk neuroblastoma on June 24, 2016, following an extended mystery illness affecting his GI function. He was misdiagnosed before losing the ability to walk on his own. John’s primary tumor was first clearly seen on his left adrenal gland via MRI on June 20, 2016. Follow-up scans and testing revealed neuroblastoma metastasized throughout the bone marrow.
John immediately began his first round of induction chemo on Diagnosis Day. Four more rounds of chemotherapy (“miniaturizer”) followed (one per month July-Oct 2016). John lost all of his hair and he was the cutest bald male in the history of ever.
John’s tumor resection surgery was performed on October 3, 2016. It was a complete success! Praise God! While he was largely immobile in the PICU, I heard murmurings of a hurricane headed for the Georgia coast. Hurricane Matthew skirted by our beautiful city on Friday, October 7 while we four Beams were holed up in a hospital room at Memorial. I always say, “I’ll do anything for a good story.” The hurricane in the hospital story was a little much for even me.
John endured two stem cell transplants: the first on November 30, 2016, the latter on January 25, 2017. To hear the words ‘stem cell transplant’ uttered prettily all in a row does not give credit enough to the two months of our lives that we spent with John at Children’s Healthcare of Atlanta. We learned a new word thanks to the high-dose chemo preceding transplant: mucositis, the painful ulceration of mucous membranes along the digestive tract (read: ulcers from end to end). It was torture for our son, our hero. His transplant team pinned on him a fitting descriptor: not only is he tenacious, John is also “stoic.”
As John’s counts recovered following transplant, he received 20 days’ worth of radiation therapy to the site of his primary tumor. No one likes to radiate a child. After all, radiation stunts their growth and often causes secondary cancers later in life. However, there’s a 50% chance of relapse for neuroblastoma babes without it, so radiate we did! This was John’s favorite treatment because he received sedation (sleepy meds) prior to his short session each day. Children either love or hate sedation. For John, it was the feeling of fighting back sleep and succumbing to it that he loved. Go figure. John fought sleep every night of his short life.
Things get a little murky following radiation. In May 2017 (following John’s cleanest scans to date), John’s platelets were consistently and critically low, and we simply could not proceed with treatment at such a dangerously low level. With a whole host of oncologists scratching their heads, our nurse navigator deduced that John may need another bag of stem cells and that John may have a GI bleed. She was correct on both accounts!
On June 2, 2017 (John’s sixth birthday), we received the lesser and very treatable diagnosis of H. Pylori. Normal people get H. Pylori (the bacteria causing stomach ulcers), but immunocompromised individuals contract this bacteria at a higher frequency. On June 8, 2017, John got another stem cell transfusion, and his body spent the next six weeks recovering from the bloody mess that the combo of cancer and GI bleeding left inside. Have I mentioned that John is our hero?!
July 2017 was the month John got back on track with the immunotherapy phase of treatment. Immunotherapy is a terrifying (for cancer itself and for cancer parents) and groundbreaking treatment option for our kids that revs up their own immune systems to fight medicinally flagged proteins on the cancer cells. It requires admission to PICU for individualized monitoring as reactions to the drug (“antibody”) can compromise our kids quickly. Since neuroblastoma is a cancer involving baby nerve cells, an attack on said cells can be quite painful. For this reason, John called his antibody drug, “Titanoboa,” named after a prehistoric constricting snake. He felt that he was the one being squeezed.
Christmas Day 2017 was John’s last day of protocol treatment. He appeared to be feeling fine, except he had the flu as well as a sinus infection he couldn’t seem to shake. Ben also contracted the flu, and we spent a blissful (and snowy) holiday break at home reading and FINALLY potty training Ben. We had already decided that John would stay home from school for a couple of weeks to attempt to heal his body, tired as it was from influenza and other infections. The break from school proved necessary.
On January 8, 2018, I took John to his pediatrician for her to look at his swollen cheek. We were hopeful that this sudden facial ballooning was a sinusitis side effect rather than cancer. Our hopes were dashed. The pediatrician sent John straight to the hospital for an x-ray, and on the evening of January 8 became our second Diagnosis Day: Recurrent neuroblastoma, our nightmare.
John began almost immediately receiving compassionate radiation to his mandible (jawbone), as the growing tumor quickly became quite painful. Our family consulted three very different institutions to take charge of John’s care, and we ultimately decided to travel to CHOA for a promising treatment called MIBG therapy.
Meanwhile (back in Savannah), we were able to complete two rounds of a new chemo combo coupled with radiation that proved ineffective. Therefore, in March 2018, following John’s Make-A-Wish trip to San Diego, we completed our first round of MIBG therapy. The amount of disease in John’s body declined dramatically! Praise God! We quickly decided to complete the second round of MIBG therapy in May 2018. The results following this round were less exciting, but John’s disease was stable.
In July 2018, skilled interventional radiologists took a sample of bony disease from John’s femur for genetic testing. They also did a standard bone marrow aspirate to determine the percentage of marrow involvement. This testing was meant to help us make a more educated decision about clinical trials, however, John’s bony disease did not show any helpful genetic mutations.
Because John’s liver enzymes were elevated, he did not qualify for any trials. We decided to pursue a round of conventional chemotherapy to act as a bridge between trials. Unfortunately, John’s little body was tired and the chemo did more harm than good. August of 2018 was a month spent mostly inpatient trying to recover from a wicked skin infection due to chemo.
John’s counts never fully recovered from his final round of chemotherapy and his neuroblastoma exploded, which prompted a lengthy hospital stay for pain management and palliative radiation to his right leg during September of 2018. Our son then transitioned to Hospice care and we savored/survived his final month of life at home.
John died on October 17, 2018. He was tenacious in spirit and in hope until his final breath. We could not be more proud of him.
Thank you for reading our son’s story. We remember him and honor his 28-month battle with neuroblastoma in this space. We love you, John.