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According to the paperwork in front of me, a clinical trial is "a research study involving treatment of a disease in human patients." According to me, it is an attempt to verify a hypothesis, a glorified science experiment.
The current standard of care for Malorie's condition, a grade three ependymoma, is six weeks of radiation. Following a complete removal of the tumor and radiation, about 75% of kids with ependymoma remain tumor free for at least seven years. Other factors, such as the fact that there are no cancer cells in her cerebral-spinal fluid, and that there was only one tumor, further decrease the chances that Mal's brain cancer will reappear following radiation. But there still remains the possibility, probably a 10-15% chance, that Mal's cancer will come back. If it does return, we will not have the option of doing radiation treatments again. It is too harmful to the body, so there are maximum levels a person can get, and Mal will get all of hers during her six week treatment. If it does return, pretty much our only option will be surgery, and if the tumor appears in an area that can not be operated on, there is no medicine to treat it.
Doctors think they might be able to reduce the chance that Mal's cancer will resurface, and so Rachel and I have been asked to enroll Malorie in a clinical trial. The clinical trial would give Mal a combination of four chemotherapy drugs following radiation to attempt to keep the cancer from ever coming back. Stamp it out while it is down. Crush the cancer while it is at its weakest following radiation. The problem is, as with any science experiment, they don't know if it will work.
The chemotherapy, administered over a 12 week period, would carry with it the standard side effects: fatigue, nausea, hair loss, pain, susceptibility to infection, sores in the mouth, etc. Additionally, although less likely, chemotherapy could cause Mal to lose function of her liver or kidneys, lose her hearing, blindness, difficulty breathing, etc. There's even a column with the title of "Rare but Serious" side effects that lists infertility, heart problems, getting leukemia or another different type of cancer, and death.
Without equivocation, should we choose to do this study, those 12 weeks will be the worst 12 weeks of any of our lives. We will be locked down in our house, allowing no unnecessary germs in. Rachel and I will have to watch Mal go through this hell, and know that we signed her up for it. Micah, bless his heart, will have to watch as his best friend, his twin sister, his other half, degrades to the point of near death. There is no way to explain that to a two year old. And Mal - she will have it the worst of us all.
On the other hand, plenty of others have lived through chemo before and been fine afterwards. In fact, the oncologist we met with regarding the trial told us that this blend of toxic medicine is actually a fairly mild form of chemotherapy compared to what others go through. Mal is young enough to forget about the pain and suffering and go on to live a terrifically normal life after the chemo should she make it through without any of the long-term side effects. The doctors tout it as being on the cutting edge of science. The standard of care for tumors was at one time applying leaches to the area for blood-letting. It has only been through clinical trials like this one that medicine moved from the dark ages into the sophisticated means that saved Mal's life so far. Doctors feel that 25% recurrence is too high. The discoveries made by this trial could help save another kids life later on down the line; a kid just like Mal.
From every angle I look at this decision, I see nothing but pain and guilt. If we choose not to sign Malorie up for this study, I will live every day of my life in fear that Mal's tumor will come back and I will have to look into her eyes and explain why we didn't do everything possible to keep it away. Will she someday think Rachel and I are cowards, too scared to take a risk? More than that, I will have to explain it to myself - second guessing all the way. Down the road if they learn that this chemo is effective at keeping ependymomas away, I will worry that we took the convenient way out - avoiding short term pain at the risk of losing her later. If they find out later that the chemotherapy did not help keep ependymomas away, I'm sure on some level we will feel vindicated. But at the same time, all along I will be rooting for the doctors to be wrong, and 25% of kids to still get recurring ependymomas just so I could sleep easy at night. What kind of man does that make me?
If Malorie does undergo chemo, we are risking death to avoid death. What if she comes out of this with liver damage, or loses the ability to have kids? What if she dies? And for what? What if ten years from now they find there is no benefit from the chemo? Then we were fools, charmed by snake-oil salesmen with white coats and degrees more impressive than mine. Even if there is a benefit, we will never know if Mal would have been in the majority, and never seen her cancer again had we just done radiation. There is even a 50% chance that if we sign Mal up for the trial that she would be selected to be a part of the control group, the kids who do not get chemo as a means of a basis against which they measure the results of administering the chemotherapy.
I have always thought that if I were ever in a situation where a building was burning and my family was inside, I would be someone who runs in. It's beyond conventional wisdom, and easy to say that because it has never happened to me, but I still think I would. There would be no guarantee that I could do anything beneficial, and I would stand a pretty good chance of getting hurt. Damn the torpedoes, full speed ahead, I would rush in. But how do I shove my daughter into the burning building? How do I not?
I believe there is a God. And I know I don't comprehend the way He works. Some days I think He controls the outcomes of situations we face, and other days I think our life is preordained and that He already knows the outcomes and sees us through along the path, loving us, strengthening us, waiting for us to come home. I think that is part of the mystique and impossibility of understanding faith. I am not able to know how God works, just know that He is there. He loves me. He loves Rachel, and He loves the twins. But I don't know if He is guiding our decision, or just here for us to rely upon as we navigate our way through this life.
Rachel and I don't know what we are going to do regarding the clinical trial, and we are certainly not seeking to have anyone else make this decision for us. We are conferring with a select few who we think can help us to generate questions and opinions for the doctors. We are studying the trial and our hearts. We are praying unceasingly. I pray for God to help guide us to the correct decision, for God to continue to watch over Mal and keep her cancer free regardless of our decision, for strength to remain thankful and jubilant to the Lord for the gifts He provides, and for me to somehow come to grips with the burden of whatever decision we make.