This thoughtful and profound blog post is offered by John Kaptan, Regent Law 2L and current Family Law student –
On March 22, 2018 legislation known as “right to try” passed the House of Representatives.[1] On March 25, 2015 John Alexander Kaptan, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). If passed by the Senate, and signed by the President, the “right to try,” law will grant patients in the final stages of terminal illness the right to “try” experimental medicines and procedures as a last-ditch effort to save their lives. DIPG is a rare childhood brain cancer[2] that is universally fatal. Median survival after diagnosis is less than one year.[3]
As a foundational legal principle, we have a constitutional bar against “ex post facto” laws.[4] This means one cannot be prosecuted for prior conduct under a new law; if the conduct was legal at the time, a later law prohibiting it does not make the prior act criminal. This may seem like commonsense, but how many times have you heard of a bad actor taking advantage of some legal technicality, some loophole, and thought to yourself, “that guy ought to be in jail,” or, “there ought to be a law against what she’s done.” The Constitution allows us to liberally amend our laws so there is no “next time,” but any act legal at the time, is beyond prosecution (regardless of the morality of the act).
Shortly after Johnny’s DIPG diagnosis he was enrolled in a Stage 2 clinical trial in which he received radiation along with a daily dose of an experimental chemotherapy. The chemo was delivered orally, though there have been little proof that existing cancer drugs have been effective at penetrating the “blood-brain barrier,” through ingestion, and certainly not achieving uptake levels capable of treating a brain stem tumor.
After he completed this trial and the tumor had shrunk quickly and significantly, we contacted a Doctor running a Phase I clinical trial testing “Convection Enhanced Delivery,” a revolutionary method of chemo delivery via multiple extremely small gauge catheters inserted directly through the skull, past the blood brain barrier, through the healthy tissue directly into the tumor itself. As promising as this breakthrough appears to be, the doctor expressed his frustration with FDA restrictions prohibiting him from using new compounds in conjunction with a new delivery method. Instead, he was constrained to use “accepted as safe,” (but never effective) chemo drugs while proving the safety and potential efficacy of the novel delivery method.
We had our consultation with the doctor on July 2d. Our son had been living with the diagnosis for 3 months. He was put on a wait list while the FDA put the study on hold because some minor hardware (a type of catheter clamp perhaps) needed to be changed. The study could not continue until the FDA had reviewed and approved the protocols with the single hardware change.
The doctor got the green light the following month. My wife and I dropped to our knees when we received the phone call in August to schedule Johnny for a battery of brain mapping imaging in preparation for the catheter implantation. His appointment was for Sep 2d.
The imaging however, revealed that Johnny’s tumor had recurred rapidly. It had begun an extremely aggressive regrowth, and his life expectancy was to be measured in weeks. This regrowth rendered him ineligible to participate in the study, because the control group was strictly limited to pediatric patients post-radiation, prior to regrowth.
Had the “right to try” law been in effect in September 2015, Johnny might have been able to receive CED. Perhaps he could have received it in July of that year.
It is tempting to venture down a path of alternate reality. Many of our favorite entertainment is based on this conceit – an alternate history, an alternate future. Conceit is the right word. For in crafting these alternate realities we are really displacing God.
The temptation to clench our fists and say, “If only. . . “ yields only bitter fruit. C.S. Lewis noted the potency of the past to capture a man’s attention in The Screwtape Letters. The diabolical tempter-tutor rightly declares,
“For the Present is the point at which time touches eternity. Of the present moment, and of it only, humans have an experience analogous to the experience which our Enemy [God] has of reality as a whole; in it alone freedom and actuality are offered them.[5]”
If we indulged this temptation, to play out a counter-narrative where the laws were different, and my son received a different treatment – we would not only be neglecting our duty, denying God’s wisdom, disputing His goodness – we would be missing out on the freedom and peace of living in the present.
Although laws change, God’s Sovereignty does not. On October 4th, 2015, my son, John Alexander Kaptan, age 6 died. In the fullness of time, my son met his True Father.
When I read of the “right to try” law passing, I asked my wife her thoughts. “God knew,” was her answer. As David observed to God, “in your book were written, every one of them, the days that were formed for me, when as yet there was none of them,[6]” so too did He know the number of Johnny’s days.
We are excited for families who may have another opportunity to try to fight for their lives. This seems to be a good law, allowing doctors and patients to advance medicine to improve and lengthen the lives of those with terminal diagnosis (as to the “rights” part – we can save that for another discussion). But, we are at peace that our son is in His Father’s presence where “there is fullness of joy . . . pleasures forevermore.”[7]
I appreciate your testimony here. It is true expression of a father’s love for his son, but it also writing perfected – putting aside intrapersonal conflict (conceit), and giving God His due sovereign glory as our creative, conserving, and concurrent cause to life.
ReplyDeleteI wanted to share the following that I wrote about my son around the time I heard your testimony last year in Wills.
“I look at my infant son and he smiles. His arms flail and his legs kick out with excitement as my familiar face stands over him in the early morning. He recognizes his father. He may give the same smile to everyone, after all, he is just a child, and he appreciates the attention. However, only I feel something for him that no other person besides his mother can feel. And then I think of God, his Creator, and the feelings that God has for him. Immediately, I recognize that my feelings are eclipsed by the feelings of the omnipotent, omniscient, omnipresent Creator God of the universe. His love for His child is unlike anything I can ever show my son. Then I think about His feelings for all babies in the world and how he sees each of their smiles. And then I think about His feelings for all living people in the world, who were once babies, but are people He still loves. And I think this is how one should begin to study the God of the universe.
I think about men who run the country that have never had children. I see that my new Secretary of Defense is a man who has never been married. He declares his marriage is to the Marine Corp, and I wonder if he can truly understand the father’s love for his son—whether or not he sees all people as God’s children from a creative standpoint—that all have been created in His image.
No genuine discussion about God’s divine sovereignty and human autonomy can begin without conceptually understanding that God is the creative, conserving, and concurrent cause to life…”
Today, I reflect back on what I wrote and what you have put here, and I see that you have perfectly illustrated a story – that this piece is written by someone that understands the spirit of unity and the potential of divisive speech. Your story could be one of embitterment, but rather it is one of true worship and is designed to promote progress.
I think about the delicacy of this discussion in which you talk about God’s divine sovereignty, your respect for government, but also a need for change, and I think it’s balanced perfectly. The bible says that any kingdom divided against itself is laid waste; and a house divided against itself falls – Matt. 12:35.
In deed, we ought to respect government regulation, and you do so perfectly. The restraining power of government as a whole is a God given right to regulate according to Romans 13. I also know that the government’s police power draws on two (Latin) principles, sic utere tuo ut alienum non laedas ("use that which is yours so as not to injure others"), and salus populi suprema lex esto ("the health of the people shall be the supreme law"), which justifies restrictions on individual liberties while ensuring the protection of our general welfare.
My point is that I focus in on the principle of salus populi suprema lex esto, and I am glad to hear that the House has recognized a weakness, and enacted legislation that follows the principle of placing the people’s health as the supreme law. It is an encouraging opportunity which I knew nothing about until reading your post.
Thank you for sharing.