Alvin Kwong, Chief Technology Officer at HubMD, CTO Health Information Technology & Innovation at Afya, shared on LinkedIn:
“I’m deeply grateful to everyone who has reached out, shared expertise, made introductions, taken on a piece of the work, or simply offered encouragement over the past 10 months since I began sharing Marlo’s cancer journey. Heck, the cancer has been part of his story since before he was born.
Three months ago, our family moved to the Netherlands. It was a huge transition, but we made it with hope: hope for Marlo, access to expertise and community, and the possibility that more collaboration can help move science and medicine forward; and ultimately help save my son’s life.
I truly believe we made the right choice. Hell yes, we did!
Since sharing Marlo’s story, I’ve been humbled by how many people have leaned in. Researchers, clinicians, patient advocates, friends, fellow parents, and people I had never met have offered time, ideas, and connections.
Some have explored circulating tumor cells and organoid models. Others have re-examined his sequencing data, asked better questions, or helped connect the dots between biological data, clinical context, and research networks.
I’ve learned that progress rarely comes from one dramatic breakthrough. It is built through many small, meaningful steps: re-examining a dataset, sharing an overlooked paper, connecting one specialist to another, drawing inspiration from nature, or refusing to accept that ‘nothing more can be done’ is the end of the conversation.
Team Marlo has come together in more ways than we can count. I make decisions from my gut, and this was the right one. Hell yes to access, collaboration, and people who genuinely want to help rather than being jaded by ‘the system.’
In the six months since Marlo finished his last chemo and exhausted standard of care, we’ve been fortunate to see him regain much of his health. He is not back to 100%, but we will keep working to make his body as strong as possible for the next fight.
We are in unknown territory. The odds for children who complete the ARST 0332 protocol with an unresectable tumor are not on our side; especially compounded by the size of the tumor, etc. Even if we keep the tumor at bay, Marlo’s worsening scoliosis and other long-term effects will need to be managed for years.
But we are not done. Time to double down, be proactive, and keep this tumor at bay. If you work in pediatric oncology, cancer genomics, liquid biopsy/CTC research, organoids, precision medicine, data sharing, or patient advocacy and see a possible insight, connection, or collaboration, I would be grateful to connect.
Thank you to everyone supporting Marlo, our family, and the broader effort to accelerate better science for children and families who need it. Your generosity, curiosity, and willingness to act matter more than you know.
If you feel moved to help, donations through Marlo’s Rare Village fund will directly support the next steps in his fight from expert collaborations to the care and options he may need ahead.”
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