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CH90 | DI
🕑 Added 2025-04-22 07:22:00 +0000 UTC“Sean, you’re here?”
A familiar voice echoed in my ears.
When I turned my head, Rachel was approaching me with a gentle smile.
Behind her, I also saw David’s fiancée, Jessie.
“Since when….”
“We arrived yesterday. We had a conversation with Amelia, and we needed to discuss important matters with the attending physician…”
It was only then that I realized these two had been in the room from the beginning.
I was so preoccupied with the patient that I hadn’t noticed their presence.
‘Instead of asking why you’re here today… Rachel being here makes perfect sense.’
Today, we planned to administer off-label rapamycin to Amelia.
Off-label.
It referred to administering a drug for a purpose other than the one approved by the FDA.
Rachel was a ‘patient advocate’ who ensured that patients were not recklessly subjected to Russian roulette and that their rights were protected.
Her duty was to inform the patient in detail of all risks associated with the treatment and to confirm that participation was voluntary.
Therefore, it was only natural for Rachel to be here.
A moment later, Amelia’s husband, Joel, and a doctor in his late forties entered the room.
David welcomed the doctor warmly and introduced him to me.
“Sean, this is Professor Julian Blake.”
Professor Blake was David’s attending physician. He was already well aware of how hopeless Castleman disease was and was assisting David in attempting off-label medication.
Fundamentally, he was a doctor who was on our side.
Knowing that, Amelia had also transferred to this hospital.
However, even Professor Blake was skeptical about Russian roulette.
I had asked him to help only in Amelia’s case, but he still had a grim expression.
“David, I’ve told you multiple times, this is a dangerous attempt. If it were just your choice, that would be one thing, but to urge other patients to make the same choice…”
“You’ve seen the research results. There is a basis for this.”
“But there’s no clinical data.”
“Someone has to start for data to be created.”
Laboratory results and clinical results are different.
Just as a car that works perfectly in the factory can still cause issues on the road, rapamycin was like a brand-new car that had never been road-tested.
It seemed burdensome for Professor Blake to approve the use of such a drug.
“This is a highly perilous action. Convincing other patients to take unverified treatments and giving them false hope is…”
At that moment, Amelia, lying on the hospital bed, raised her hand with difficulty.
Although she couldn’t move much, Rachel quickly noticed her small gesture.
“Here.”
Rachel handed a small notepad and pen to Amelia.
Then, Amelia began to write clumsily with her trembling hand.
<I know>
After reading the note, Rachel nodded and spoke to Professor Blake.
“In the end, the patient’s choice is what matters. And Amelia is well aware of the risks this treatment entails.”
Rachel approached the bedside and gently held Amelia’s hand.
“Amelia, as I told you yesterday, this drug can put significant strain on your kidneys and liver. You’re already in pain now, but after the treatment, that pain could worsen.”
Rachel gazed at Amelia with warm eyes.
There was something more than mere sympathy in her gaze—an earnest message of support.
Tap, tap.
Amelia lightly tapped the notebook she was holding with the pen.
The very phrase ‘I know’ written on it.
“Moreover, rapamycin is an immunosuppressant. Given your weakened immune system, you may need to be isolated in a sterile room after the treatment. That could make it difficult to freely meet and converse with your husband.”
Tap, tap.
“This medication is being tried on Castleman disease for the first time. Even the proper dosage has not been established yet. We plan to start with a small dose and gradually increase it, but if the dosage is too high, it could cause fatal damage to your body.”
Tap, tap.
“In addition to liver and kidney damage, there’s a risk of severe suppression of bone marrow function, leading to a sharp decrease in white blood cell or platelet counts. The medical team will monitor your condition regularly, but that’s only a post-response measure after side effects appear.”
Tap, tap.
“Since you’re the first person trying this drug, setbacks are inevitable. And each time, you will suffer painful aftereffects.”
Tap, tap.
“Even after enduring all those hardships, there’s no guarantee the treatment will work. The chances of success are uncertain, but the side effects are certain. That’s why Professor Blake opposes it. Even so, are you really willing to go through with it?”
Rachel seemed to be urging Amelia to reconsider the treatment.
Amelia’s eyes trembled occasionally, but she soon moved her hand.
Tap, tap.
Such exchanges continued for a while.
Rachel listed all the possible side effects and nightmarish scenarios this treatment could bring, but Amelia’s response remained the same.
Tap, tap.
No matter how uncertain and perilous the treatment was, she was willing to accept it.
It was an expression of her resolute will—not to succumb to fate, but to try, even if it would be painful.
In the end, even Professor Blake had no choice but to nod.
“Sigh, understood.”
With a heavy sigh, the professor gave instructions to the nurse, who soon approached with a syringe.
Rapamycin is typically administered in pill form, but since Amelia was unable to swallow solids, it was decided to use a liquid formulation of the drug.
The doctor carefully began injecting the medication through the IV line inserted in Amelia’s arm.
With this, the first trigger of Russian roulette had been pulled.
***
After the injection was completed, we stopped by a nearby diner for a simple dinner.
I could barely swallow more than a few bites when Jessie’s voice broke in.
“What? A subsidiary?”
David had apparently told Jessie about my plan to establish a subsidiary.
Surprisingly, Jessie responded positively.
“Of course, it’s necessary. That way Sean can provide the funding, right?”
“So, you’re in favor of it?”
“It’s a good idea, isn’t it? We can’t possibly conduct clinical trials on donations alone.”
Jessie was a highly pragmatic and rational woman.
Except for the time she pressured her dying boyfriend into a one-sided engagement.
But then, Jessie suddenly furrowed her brow as she turned toward me.
“But what if, by some chance, the company goes under? If the clinical trials are conducted under the company’s name, won’t the research be scrapped midway?”
“That won’t happen.”
I answered confidently.
I wasn’t planning to limit the subsidiary’s operations to just handling biological samples.
What good would it be to keep future knowledge to myself?
I could proactively acquire companies whose future value was expected to rise and build a robust portfolio.
Although, there were many stringent conditions attached to that as well…
“So, in the end, it’s about trusting Sean’s abilities?”
“That’s right.”
“Hmm, okay. I’m in favor for now.”
Jessie unexpectedly agreed easily.
“Honestly, when you said you’d give us $4 million by April, I was sure you were a scammer. But in the end, you pulled off $100 million. I guess I’m in no position to question Sean’s investment capabilities. All I want is for things to continue like this.”
Thus, the agreement on establishing a subsidiary was smoothly reached.
One current issue had been resolved without complications.
“Then, I’ll keep you updated on the progress via phone and email.”
After a brief farewell with David, I boarded the train to New York with Rachel.
“How was your business trip?”
“California? It was very pleasant.”
“Glad to hear that.”
…..
Once we were left alone, a slight awkwardness lingered between us.
I had been intentionally keeping some distance from Rachel lately.
Since I had become directly involved with her father, Raymond, I judged that maintaining too close a relationship with Rachel would do more harm than good.
After exchanging a few formal pleasantries, Rachel quietly smiled and spoke.
“Actually, I found it a bit surprising.”
I could only think of one reason she might say that.
“You mean me personally visiting Amelia? I was going to meet David anyway, so I stopped by while I was here.”
“No, that’s not it…”
Rachel cautiously observed my expression before continuing.
“I mean your decision to fully cover Amelia’s medical expenses. She’s not even an official clinical trial participant…”
That was true.
Amelia’s treatment had nothing to do with the clinical trial.
To officially begin Phase 1 trials, various regulatory approvals were needed, along with $400 million in funding, which was expected to be secured by the end of the year.
In other words, our official clinical trial wouldn’t start until around December.
Therefore, on paper, Amelia was simply an individual patient who voluntarily chose an unapproved drug.
Regardless of whether the treatment succeeded or failed, it had no bearing on our clinical trial approval.
Yet, I had volunteered to sponsor this treatment.
Given Amelia’s condition, it was uncertain if she could hold out until then, so I decided to administer the drug immediately.
That was my official reason.
“It’s going to be quite costly…”
“The drug itself isn’t expensive.”
“The cost of the drug isn’t the issue, is it?”
Fortunately, rapamycin itself wasn’t that expensive, but there were other looming challenges.
Namely, the fact that it wasn’t covered by insurance.
It was like driving a car on the road for the first time—no insurance company would be willing to cover it.
Thus, I had to personally bear all the costs related to potential side effects, examinations, and treatments for Amelia.
I had promised to cover all those expenses.
Rachel was saying that she found that decision surprising.
“Sean, you’ve always emphasized that only results matter. But this doesn’t seem related to clinical results…”
“That’s not entirely true. While it won’t be included in the official report, it will still serve as valuable data. It will help us gauge whether the drug shows efficacy even in terminal patients.”
“…”
“What is it?”
“Nothing…”
Rachel paused briefly before sighing and continuing.
“I think you need to be more careful with how you phrase things, Sean.”
“Sorry?”
“When you talk like that, people might misunderstand and think you’re only doing it for the data.”
“Oh, is that so.”
“If you do something good but get misunderstood because of how you say it, wouldn’t that be unfortunate?”
Normally, I would have chosen my words more carefully, but today I was too tired to bother.
Or perhaps I simply didn’t want to dress up my motives.
I couldn’t bring myself to say, “I did this for Amelia.”
Saying something like that would’ve felt like inviting divine retribution.
The truth was, my support for this Russian roulette was driven by purely selfish motives.
I was doing it solely for my own survival.
But that wasn’t all.
In fact, I was secretly hoping this attempt would fail.
The rapamycin we prescribed was only the second treatment option for Castleman disease.
It was a drug that hadn’t worked for me.
What I needed was the unknown third treatment.
To find that, I first had to identify patients with symptoms identical to mine.
The unlucky ones for whom even the second treatment didn’t work.
Gathering them would allow me to spin another round of Russian roulette, opening up my path to survival.
“Sean, it seems like you’re particularly averse to being seen as a good person.”
That’s because I’m not a good person.
“If all you wanted was the data, there was no reason to personally visit today, was there?”
I didn’t come here to cheer Amelia on.
She might be risking her life for me, and it felt too cowardly not to face her.
There’s a clear difference between the two.
“Amelia and Joel were deeply grateful for your support.”
A bitter smile escaped me.
That’s only because they didn’t know the truth.
“Do you think they’ll still feel that way if the outcome is death?”
“What?”
“If the worst outcome happens, they might end up blaming me instead.”
Rachel seemed momentarily at a loss for words but soon spoke resolutely.
“No, they’ll still be grateful. If the worst happens, it will be sad and heartbreaking, but at least they won’t have any regrets.”
Spoken like a true princess, with pure-hearted naivety.
Humans aren’t always so rational.
“And besides, they can’t blame anyone in the first place. Amelia made her choice fully aware of the risks. I spent four hours explaining it yesterday.”
Rachel’s explanation had been exhaustive.
She didn’t omit anything, even covering points that seemed unnecessary, and explained everything so clearly that I was concerned Amelia might reconsider.
After hearing all that, would she still be willing to pull the trigger?
“She understood the risks and made her decision. I’m sure of it.”
She was right.
Despite Rachel’s exhaustive explanation, Amelia had willingly decided to take the risk.
Separate from my selfish motives, it was undoubtedly Amelia’s decision.
And rapamycin was indeed one of the treatments for Castleman disease, so while it wasn’t the outcome I wanted, there was still a chance it might work for her…
As I kept repeating this justification to myself,
Bzzzz!
Suddenly, my phone vibrated loudly.
The caller was Dobby.
[Sean! Did you see the broadcast?]
“No, I’m on the train right now.”
[Don’t you have a streaming service? Turn on CNBC!]
“What is it?”
[The Great White has changed their strategy!]
