We met Dr. Robert Negrin on the first morning after Viral’s admission to the hospital. He ran the Blood and Marrow Transplantation division at Stanford for twenty years and has over 265 papers, 40 book chapters and a book to his name. He is Vice President of the American Society of Hematology with successive terms of President Elect in 2025 and President in 2026. In short, a leading light in the field. His manner is kind, reassuring, approachable. He chats with us about his time volunteering in Cambodia, offers empathic words on hearing of our concurrent treatments, and shares a little bit about the incredible advances he’s seen in the transplant field over the decades. He was the one who recommended Living Medicine to us.
Sharing an excerpt from the book here, as it offers a compelling window into the surreal and stunning world of the medical journey we find ourselves in the midst of…
Preface to Living Medicine: Don Thomas, Bone Marrow Transplantation & the Cell Therapy Revolution, by Fred Applebaum
Even though I’ve been doing it for decades, every time I perform a bone marrow transplant it seems like magic. Take, for example, Kent Klingman, a thirty-four- year-old father of two young girls who is dying of leukemia. Instead of letting the disease have its way, we treat him with a combination of chemotherapy and radiation — so toxic it will permanently destroy his ability to make blood or fight infection and kill him in a matter of weeks if we do nothing more. We wait a few days for the toxins to clear, then take bone marrow cells obtained from the hip bone of an anonymous donor halfway around the world and inject them into Kent’s vein. Here’s where the magic starts. While most of his blood cells zip down the middle of his blood vessels like cars on a highway, the bone marrow cells slowly roll along the vessel walls, like window shoppers on the sidewalk. When they get to the right address, a specific spot in the bone marrow, the marrow cells stop and slither through the vessel wall into a unique niche, vacant because we’ve just poisoned the previous unruly tenants. Once in their new home, the transplanted marrow cells start doing their job, producing red blood cells to carry oxygen, white cells to fight infection, and platelets to prevent bleeding. While this is happening, we treat Kent with powerful immunosuppressants to prevent him from rejecting his new marrow and, vice versa, to keep the marrow from rejecting him. Then we wait.
It takes time for the new marrow to get going. For the first week after transplantation, Kent’s blood counts are frighteningly low. Healthy people have 5,000-10,000 white cells per microliter (ul) of blood protecting them from infection; during the first week after transplant, Kent has none, zero.* A normal platelet count is 150,000-450,000/μl; he’s lucky to have 1/100th of that, not nearly enough to prevent spontaneous bleeding. By using potent antibiotics and platelet transfusions, we keep Kent safe, but only for a while. Ten days after transplantation, there’s no cell recovery. This is when I start reassuring him and his family that the marrow graft will soon start to function. How do I know? Because it always does. Well, almost always. Perhaps one in a hundred times marrow fails to engraft. While outwardly I’m reassuring Kent, inwardly I’m praying that this isn’t one of those occasions. Then, around day fourteen, a few white cells start to show up in his blood–at first just a trickle, and then a steady stream. Finally, we exhale.
And now more magic. Even though Kent’s cells and his donor’s are genetically different and should reject each other, during the next few weeks the transplanted marrow learns not to lash out at its new host, and Kent’s body begins to accept its new boarder. Over the coming months, Kent will fully recover, becoming a healthy chimera, a person who is 85 percent himself but 15 percent the cells of someone else. Those adopted 15 percent produce Kent’s blood and his immune system, and, perhaps most surprisingly, serve as a form of living medicine, constantly patrolling his body for any residual leukemia and destroying it. To be clear, bone marrow transplantation doesn’t always work, but when it does, it’s magic. Because marrow transplantation is an effective treatment for almost every blood-based disease, it’s now performed over 100,000 times a year…
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We are in the waiting phase of the journey. The doctors are monitoring closely, looking for the first signs of uptick in that bottomed out WBC count. “You’re in the home stretch,” they tell Viral, “It’s only a matter of days now.” In the meantime he must navigate the expected and near-unavoidable side effects of having zero immunity in a body so recently bombarded by aggressive chemotherapy and a slew of other potent medications. His regimen includes a battery of immunosuppressants, antibiotics, antivirals, anti-fungals that are administered with clockwork regularity, some in pill form, others through injections, still others slow-dripping through the transparent tubing that snakes from the various bags hung on his IV pole into the Hickman catheter in his chest. While the drugs offer a significant degree of protection, the ‘x’ factors are considerable and ever-present.
After his post-transplant CRS fevers were successfully controlled, Viral experienced an unexpected and dangerous degree of fluid retention. Within a 24 hour period he gained close to 20 pounds– a result of his body being unable to adequately release the hyper-hydration fluids he was being given to protect his organs from the chemotherapy. His oxygen saturation levels dropped, and so did his blood pressure. He developed a cough from the fluid accumulation in his lungs. His abdomen, legs and feet were visibly tight and swollen. In the immediate wake of this discovery, an expert from the oncology ICU was alerted. It was unclear for awhile whether he would need to be shifted to their care. He was put on oxygen and a bed alarm (meaning an alarm would ring, should he ever get out of bed without a nurse present). A delicate balance would need to be struck between the body’s multitude of very real fluid needs, and the addition of specialized diuretics and biologics into the equation to help the kidneys release the excess.
All this in addition to the “normal” side effects of a transplant. This course of treatment places the entire GI tract under siege. Digestion is profoundly compromised, painful sores can and do develop in the mouth, and even deep in the throat. Unforgiving nausea and a near total loss of appetite grip the system. Other side effects like dizziness and low blood pressure can be further destabilizing. Sleep is elusive and must be snatched in the irregular windows between being treated, tested and monitored day and night. And in addition to all these things is the awkwardness and discomfort of being tethered to an IV pole 24 hours a day, for days on end.
Over the past week there have been many ups and downs. There continue to be many periods of acute pain. Through the rockiest phase the doctors have been impressed by how much healthier Viral looked in person than his numbers appeared on paper. His warm demeanor, mental composure, and capacity to engage, even in the midst of deep discomfort, account for part of this, but some of his physical resilience is unaccountable. It can neither be anticipated or explained. It is a blessing.
Currently his body has released a good percentage of the accumulated fluid, and the various side effects are being skillfully managed at the medical and mental levels. In so many ways Viral has trained for this marathon of endurance in more ways than he could ever have realized at the time. His doctors are happy with his progress. And I am in awe of his quiet capacities that continue to reveal themselves as push comes to shove, ‘where the spirit meets the bone.’
The Poetry Of 