Saturday, December 10, 2011

The Trial

NOTE: If you choose to leave a comment regarding this post, please do not leave a comment with your opinion of what we should do. We welcome your comments of encouragement and prayer.

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.

17 comments:

  1. Praying for you to rest in the One who is before all things, and in Him all things hold together. That His strengthening of you would fill you with all necessary endurance and patience with joy.

    ReplyDelete
  2. Supporting you 100% in whatever decisions you make. Praying for the peace of God, which surpasses all understanding, to fill you and surround you. And that He will guard your hearts and minds through Christ Jesus. That you will, miraculously feel His protection over your family. He is standing guard over you all.

    ReplyDelete
  3. Bless all of you. This is a hard decision, and I have no idea what I would do. I'm not here to give advice, or to apologize. But I'm praying. And just know that whatever you choose, you made the right decision. God knows what you will choose. God will lead you in your decision. And I saw Malorie at Webster Gardens today and bless her heart she was so adorable!

    ReplyDelete
  4. you are strong, billy. you are a strong and capable and loving family. you and rachel will be guided to decide what is best, i have no doubt. and i wish you peace in your decision making. you will always have our love and support.

    ReplyDelete
  5. Many prayers for your comfort as you make your decision. Know that whatever you choose to do, your decision will be made with love. Many hugs.

    ReplyDelete
  6. I think @The Diatribest said it best: "...Know that whatever you choose to do, your decision will be made with love."

    ReplyDelete
  7. Peace and and love and resolve to you.

    ReplyDelete
  8. I *second* Aunt Carol in reminding you that all of your family and friends that love you unconditionally support whatever you decide 100%. We will not look back...we will not 2nd guess...we will continue to pray to the Ultimate Healer..and we will continue to help you in what ever ways we can. Prayers for PEACE and GUIDANCE! WE LOVE YOU!

    ReplyDelete
  9. I know you don't want any advice, but I do have some experience with this decision. I had to make it for myself about 4 years ago. If you guys have any questions or just need someone to listen, I am always here for you! We are all praying for you guys and Mal.

    ReplyDelete
  10. First let me apologize for being behind the curve on this and just learning. Thank you for your blog. Solomon asked for wisdom, I will pray that God will give you wisdom. God also said that He will give us peace that passes all understanding, and grace to see through trials. We may not agree with the road but have peace in knowing He loves you all, has a good plan for your life, and is cradling you in the palm of His hand. He will guide you both and may your path and strength be an inspiration to many. You are in our prayers.

    ReplyDelete
  11. Praying for you all in making this decision. I'm mostly praying right now for a peace in making the decision. Neither is "right" and neither is "wrong" it sounds like. I hope and pray that you will find the strength and peace and security in whichever decision you make for Mal and your family. Much love to all of you.

    ReplyDelete
  12. From one pediatric cancer family to another I want to encourage you to do what you feel is right. I quit chemo for my daughter in favor of alternative treatment. I wish I had done LESS chemo and LESS invasive surgery. That was 4 years ago and my daughter is healthy and happy and cancer free. If you'd like more info on our protocol you can see it here: www.teambettendorf.com/jillian or if you have questions feel free to email me at KatieintheOzarks@gmail.com

    ReplyDelete
  13. I pray that God, our Jehovah Jireh, will place His healing hand upon your sweet girl and give healing from the top of her head to the tips of her fingers and toes. I pray that upon you and your wife He will bestow a sense of peace which surpasses all understanding as you prayerfully make your decision about her care. No matter what that choice is we know that God will work all things for good...even when it scares us half to death.

    Lord hear our prayers and may your will be done.

    ReplyDelete
  14. Y'all are in such a tough place. I am praying for you. These lyrics came to mind as I was thinking of your sweet family:

    Blessed be Your name
    When the sun's shining down on me
    When the world's 'all as it should be'
    Blessed be Your name

    Blessed be Your name
    On the road marked with suffering
    Though there's pain in the offering
    Blessed be Your name

    Every blessing You pour out
    I'll turn back to praise
    When the darkness closes in, Lord
    Still I will say

    Blessed be the name of the Lord
    Blessed be Your name
    Blessed be the name of the Lord
    Blessed be Your glorious name

    ReplyDelete
  15. Sending you prayers and positive vibes so that you are at peace with whatever decision you both make.

    ReplyDelete
  16. Our prayers are with you. We hope she becomes and stays cancer free

    ReplyDelete