Donald’s Cancer Journey
This journey has felt like it has lasted a thousand years. We believe Donald will be healed and achieve remission (again)! This “short” blog post chronicles the key points of treatment and Donald’s subsequent relapse. All of the below information, including cost breakdown is available on our GoFundMe page.
From the beginning written in 2019:
Donald affectionately goes by “little” or “baby” D, an homage to this dad, Donald senior. Shortly after his 4th birthday (Nov 25), little D started having transient low-grade fevers in January 2020. They went away with over-the-counter meds, and he remained his cheerful self – giving no cause for alarm. Then he began waking up in the middle of the night, crying from pain. While this is not uncommon to most parents with young children, Nickell felt something inside pulling at her to see the pediatrician.
Imagine the whirlwind over the next 14 days – being passed on to new specialists, undergoing multiple scans, hearing words like “metastatic spread”—when it was only just the other day, when little D was a happy, healthy boy.
Neuroblastoma is a rare cancer – 650 children in the U.S. are diagnosed every year. Among that, about half present with advanced stage similar to Donald. And even still, a very small percentage of this group have his tumor’s rare histology. His team of medical oncologists, with over 30 years of Neuroblastoma-focused practice under their belt, recollects only 4 cases like this in their career collectively.
Today, he is an eldest brother to a 21-month-old sister Maya, and a 5-minute-younger twin brother Ephraim. Over the next few days, the family will welcome a sixth member, a baby boy or girl who is yet to be named.
He has endured 2 rounds of high-dose chemotherapy, and there’s 3 more to go…plus surgery, plus stem cell collection, plus radiation, plus immunotherapy. He handles everything with more bravery than I could ever imagine and with a lightness that perhaps only a young child can muster in the face of cancer.
Thanks to medical advances, a child with this stage of disease has a 50% rate of cure. Even several years ago, these numbers would be much lower. But 50% is not nearly high enough when it’s your son, brother, or friend.
Donald, the father, works the graveyard shift at a newspaper distribution facility. He takes care of Maya and Ephraim during the day when Nickell and little D are admitted to the hospital for chemo infusion or neutropenic fevers. The family needs a sitter on those nights.
When your body’s immune system has been obliterated by chemo, fevers are incredibly dangerous. Anytime he experiences a fever, the parents must drop everything and rush him to a hospital within the hour. Their time spent in the hospital accounts for about half of the 21-day cycle of chemotherapy. Nickell has been with her son day and night on the hospital’s humble daybed even while 7, 8, and now 9 months pregnant.
The COVID-19 pandemic also adds an unprecedented stress during what are already unimaginably difficult times. Patients undergoing chemotherapy are among the most vulnerable populations.
January 2020 Relapse:
Those who personally know the Morgans may have already heard, but Nickell and I wanted to update this entire community of some important developments in Donald’s cancer journey.
A few days ago, he relapsed. In fact, just 2 weeks before this point, Donald was declared NED (no evidence of disease). In the midst of preparing a celebratory announcement for the Gofundme page, Donald began developing symptoms of nausea, vomiting, and headaches, and doctors found a new bone met in his skull pressing onto his brain.
“It hit us harder than the diagnosis,” says Nickell, “like a gut punch.” After doing everything right—chemo, radiation, immunotherapy for almost a YEAR – this happened. Just as Donald and the family were beginning to digest the good news, their world was ripped out from underneath them yet again.
When I learned of the relapse, a lot of words came to my mind…unfair, heartbreaking, even cruel. But this family is stronger than any I know. They always pick themselves up and live out the very essence of Romans 12:12, “Be joyful in hope, patient in affliction, faithful in prayer.”
Even 5-year-old Donald is brave beyond measure – he says he’s sad to lose his hair again but understands this is what he has to do to get better.
At this point, the doctors expect about 2.5 months of a new chemotherapy regimen, with concurrent radiation to the sites of disease. This will likely be followed by immunotherapy and hopefully a vaccine trial, which take us to another several months at the least.
Due to complicated COVID inpatient restrictions, the family decided to receive outpatient treatment. Some positive points are that this allows Donald some sense of normalcy - to sleep in his own bed and play with Ephraim, his twin brother. It also allows the parents to spend quality time with Ephraim, Maya, and Ezra and manage the household.
However, outpatient treatment also means increased expenses, mainly due to frequent trips and the challenges stemming from that. On Jan 7, Donald started “phase 1” of the new treatment plan, which entails chemo and radiation. These next 2.5 months will be the most hectic, with approximately 30 trips into Manhattan, not including the unplanned rushes to the hospital whenever a neutropenic fever hits. With dad’s work schedule and 3 other siblings at home, ordering takeout will become the norm, and a babysitter will be needed almost around the clock, including overnight stays for emergencies.
Due to this, we are raising the target goal, and hope that those seeing this message can help spread the news – perhaps also donate – once more. Please know that even a small donation has a great impact.
Future updates:
I will update you all on Donald via my Instagram. I have recently added a story highlight on my profile titled SuperDonald, so you will be able to keep up with the latest updates.
Thanks for reading. Know you can always support by praying, reaching out, checking in on Donald, and also financially by clicking here.