Friday, November 18, 2011

Brain Cancer is a Bully

When I was a kid, I hated bullies. I got bullied a bit on my block. I was an easy target: small, not so brave, bad haircut. Then after a few years of getting periodically knocked around, I had my moment. It was in my best friend Cliff's backyard. A kid named Lee had been throwing some hate my way for a little while. I tried to yell bad words back at him, and he didn't relent. I threatened to call my dad, but he was unafraid. Finally it got physical. I was in front of a bunch of other kids, and for some reason decided to be brave and stand up for myself. I threw a punch at Lee, hit him in the lip, and he fell and hit his chin on a scooter that was in the yard. Lee didn't bully me anymore.

The final pathology came back on Mal's tumor, and it is a grade three ependymoma. That means it is a bit more aggressive than we had hoped, and will have to be dealt with through radiation. Dr. Smyth did a good job of reminding us that the long term prognosis for Mal remains the same; this is no death sentence. The most effective way to defeat an ependymoma is to fully remove it from her body, and we believe that has been done. The difference between a grade 2 and a grade 3 is how quickly it grows. Since Mal's cancer moves faster, we must stay ahead of it.

The first step is going to be to wait ten days after her ventriculostomy tube is removed, and then perform another MRI and a lumbar puncture. The doctors saw a portion of the MRI of Mal's spine that caused them some worry, and they want to see it from another angle. They think it is just a cluster of blood vessels, but they have to be sure it is not an early growth of another tumor. Additionally, they will test her cerebral-spinal fluid for cancer cells. The way the doctor put it was "we have to make sure the cow didn't get out of the barn."

Provided that Mal shows no signs of the cancer spreading, we will likely then move forward with localized radiation to Mal's head. That will minimize the negative effects on her development. She will most likely receive thirty treatments of radiation - five days a week for six weeks. This will be very rough on her, but the side effects will be necessary to ensure the tumor is dead. It will not be easy on our family either, but we will continue to draw into the vast reserves of faith, family and friends to help us get through it.

If the cancer has spread, we will have to come up with another game plan. Localized radiation will likely not be an option, and we may also look into chemotherapy. Patients with ependymomas don't necessarily do any better after chemo, but we might as well throw everything we've got at this thing to try to kill it.

Brain cancer is bullying Mal. Getting mad at it won't help. Yelling obscenities about cancer won't help. But everyone is watching. Mal will fight back. It will not be easy, but forcing a bully to leave you alone never is.


  1. Katie's boyfriend, Shawn, texted, "He is able to do immeasurably more than we could ever ask or imagine, according to His power that is at work within us." Eph. 3:20. That, and your reassurance that Mal's long term prognosis is the same, have made it easier to breathe.
    Your vast reserves are full. No bullies allowed.
    The Knipp family is praying continually. We all send much, much love.

  2. Lifting you all up in prayer. Obviously, Mal is a fighter...a really tough one with Jesus in her corner and hundreds of fans pulling for her.

  3. Billy and Rachel- cancer is a bully- but it sounds like your little girl is a fighter. Luke earned the nickname "Strong Engine Luke" during his treatment. His stubborness and willfulness is what I believed got him through, just like it will Mal. She also has a set of parents that have already fought so hard to find out what was wrong with their little girl, and now will fight so hard to "fix it".
    I know you all have so many resources at your hospital-but if you have any questions please let me know. Luke underwent both radiation and chemo for his treatment.
    I loved seeing Michah and Mal together.

    -Ben and Meghan

  4. Mal has an entourage fighting on her behalf, backing her (and you all) up, and lifting her up in prayer. Kick some ass Mal. You can beat this!

  5. I am praying daily for Mal and all of you. Billy, your testimony of faith and trust in God is moving and inspiring as is your unwillingness to consider assessing blame. I don't think I have ever met you, but I will make it a point the next time I see you at church. I have known Rachel since she was a kid and I remember your baptism. I pray for complete healing for Mal and that all of you feel God's peace and comfort. "Be still and know that I am God." Psalm 46:10

  6. Mal is very very lucky to have parents like you. It sounds like you have good doctors who are helping you fight and understand everything along the way. Stay strong for Mal and know that you are helping her so that she can thank you for the rest of her life!