August 21, 2014 – December 18, 2020
Diagnosed: October 31, 2019
“There are some who bring a light so bright to the world, that even after they are gone,
their light remains.”
Hudson Thomas Sands was born August 21st, 2014, and was diagnosed with DIPG on October 31st, 2019, at 5 years old. He was healed in heaven on December 18th, 2020, at the age of 6.
Hudson fought tirelessly for 14 months (414 days!), beating his 9-12 month terminal prognosis with grit, determination, and an unceasingly positive attitude. Our sweet boy had to endure 3 surgeries, 40 rounds of radiation, countless MRIs and pokes, and hospital visits in 4 different states. He is truly the bravest person we know.
After being diagnosed, he immediately had shunt surgery to resolve hydrocephalus (fluid in his brain) at Children’s Mercy Hospital in Kansas City, our hometown. We then traveled to St. Jude’s and had a biopsy performed in Memphis, Tennessee, which confirmed the worst – that he had the H3K27M deadly tumor mutation. After researching clinical trials across the country, we enrolled him at MD Anderson in Houston, Texas, and he completed 30 rounds of sedated radiation simultaneously with the ONC201 clinical trial.
In the midst of treatment in Texas, we managed to make a lot of incredible memories. We traveled frequently to Galveston, as Hudson loved the ocean. We stayed at the Ronald McDonald House and participated in daily activities for families, which ramp up around the holidays. We made countless trips to the Houston zoo, children’s museum, NASA, parks, and playgrounds. We took a trip to San Antonio, complete with an animal safari / giraffe feeding experience, Legoland, and zoo visit over a long weekend. Thankfully, our daughter Addie (7 at the time) was able to come with us initially over her Thanksgiving break from school and visit again for 3 weeks during her Christmas break. Having our family of 4 split up for weeks at a time was incredibly hard, and we were relieved and thankful to be reunited. We arrived home to Kansas City at the end of January 2020 and were blessed to have a “rainbow period” for 9+ months including our time in Texas, during which Hudson felt well.
Hudson’s rainbow period was filled with living life to the absolute fullest, despite his ongoing treatment and the global pandemic. We were able to discontinue our every-3-weeks trip to Texas dictated by the clinical trial, and be seen in KC for checkups and MRIs. We had a wish trip scheduled to Disney World in March, which unfortunately shut down due to the pandemic. The Dream Factory planned an enormous parade to cheer up the kids (and us!). The parade through our neighborhood included firetrucks, police cars, construction vehicles, motorcycle and car clubs, a monster truck (Hudson’s favorite), his preschool bus, a tractor, a band, lots of superheroes and Disney characters – over 1,000 people participated! Hudson LOVED it and didn’t want it to end, despite fatigue he was experiencing that day from tumor swelling. We were granted an alternative wish trip in July to San Diego, our favorite city in the U.S. We stayed in a house overlooking the beach, complete with a pool and hot tub – the perfect quarantine location. The highlight was a private tour of Sea World complete with multiple animal encounters, something we all loved and will never forget. Our last trip as a family of 4 was to Big Cedar Lodge on Table Rock Lake for his birthday in August, his favorite place on earth.
Unfortunately, an MRI on August 13th, 2020, showed tumor progression as expected. His symptoms had worsened, and we knew his rainbow period was coming to an end. We traveled to Mott’s Children’s Hospital in Ann Arbor, Michigan, to be seen by one of the best pediatric neuro-oncologists in the country. There he completed 10 additional rounds of radiation (unsedated!), which reversed some of his symptoms and allowed him to start kindergarten in September — something he’d been anxiously anticipating for months.
Hudson was a kindergartner at Cedar Creek Elementary School in Kansas, which he absolutely loved. He lived a life full of energy and love, and he lit up the room with his infectious smile, fierce spirit, and huge heart. He put 100% into everything he did, from building LEGOs, to singing, dancing, giving “Hudson Hugs,” laughing, fishing, swimming, playing with friends and family, learning, or simply announcing his presence. He believed there was no time to sit still when you could be having fun.
It is impossible to adequately describe the horror of watching your active, happy, and healthy child slowly lose vital functions while remaining completely aware mentally. An excerpt from our #TeamHudson Facebook group on December 8th, just 10 days before he went to heaven, is an attempt:
Watching your child’s “lasts” is equal parts humbling and horrifying. I remember Hudson’s firsts like they were yesterday, and each last is as devastating as his firsts were exciting. I’m brought to my knees constantly, begging for a miracle that, at the very least, he be spared suffering. But it seems that is not to be.
Hudson has now walked, gone to school, spent the night in his bedroom, built a LEGO set, fed himself, taken his own shower, gone to the bathroom, dressed himself, gone to the hospital for treatment, and many other things for the last time.
I’ve given him the Heimlich maneuver on 2 separate occasions, worried about him aspirating during lengthy coughing fits, and struggled desperately to understand what he is saying through severely impacted speech.
This week we’ve visited funeral homes, walked through cemeteries, spoken with our pastor, requested that his tumor be donated to research, and told Addie her brother is dying — all with the guidance of our hospice team.
It leaves us doubting, questioning, agonizing, and sobbing over what is to come, as well as what is not to come.
The reality is that this disease is BRUTAL, and we are not always strong. No child, sibling, nor parent deserves this. We need your prayers. We know your hearts are hurting along with ours, and we thank you for sharing in our pain despite wishing this pain upon no one… not even our worst enemy, let alone our precious child.
If there is any comfort to be sought, it is in knowing exactly where Hudson is. Hudson had faith that was beyond his years. He spoke about going to heaven, although he didn’t know how soon he would be there. He used to say, “Easter is my favorite because Jesus is risen.” His favorite song was “10,000 Reasons (Bless the Lord),” and he loved to belt it at the top of his lungs. He knew the Lord’s Prayer and could recite it on his own at age 4, and had a huge heart for Jesus and others.
Hudson brought out the best in those around him. In addition to teaching people to never take a single day for granted, he leaves a legacy of bringing people together to make a positive impact on those in need.
“I am Smart. I am Kind. I am Loved. I am Brave.”