Thursday, December 29, 2011

Christmas Fear

Have you ever read or heard something and thought that it was written specifically for you? Not a note that was addressed to you, but something designed for general public consumption that just speaks to you. The first time it happened to me, it was the book Of Mice and Men, which is still my favorite book. I was a teenager longing to grow up and see the world, and it provided me with the understanding that a person might have to make painful sacrifices in order to achieve a sought-after change. That book provided me the motivation to leave home for college.

On Christmas Eve, the pastor at our church, Webster Gardens Lutheran, gave a sermon that very well could have been crafted solely for me. It was titled Christmas Fear, and it was all about fear being a dominant emotion during the holiday season. Pastor Christiansen sagely guided the congregation through the tumult that was the first Christmas, and tied in themes from modern day - all while urging the congregation to dispatch their fears and focus on faith. To help him push the point home, all the children attending the service were given signs to hold up that read, "Fear Not," and every time the pastor urged the congregation to loosen the bonds of fear, the kids would hold up their signs and yell, "FEAR NOT."

This year has been filled with fear for me. Leaving the only profession I have ever known to enter the civilian sector was scary. At times my job search was terrifying, as I lay awake wondering if I would be able to support my family, wondering if I would love my new job as much as I loved flying planes, wondering whether I was making a huge mistake. In August I almost lost my Dad. Every time my phone rang that day, I was petrified. And then we went through learning Mal had a brain tumor. Two surgeries with her life in the balance, learning it was cancer, knowing it can't be fixed overnight... It has left me scared, at times frozen with fear.

But then there I was, sitting in a pew, surrounded by my family and friends on Christmas Eve. And every few minutes, either Micah or Mal would hold up their sign and yell, "FEAR NOT" (often at inappropriate times, but hey, they are two years old) and it kept making me feel more and more strongly that everything is going to be all right. And that message has propelled me to have a truly enjoyable holiday.

Malorie, Micah, Rachel and I have had a terrific Christmas. Joy and wonder filled the house on Christmas morning as the kids saw that Santa had eaten their cookies and left them gifts. We got to Rachel's parents on Christmas afternoon, and then my parents travelled in from Chicago that night to spend time with us. The twins have learned several Christmas carols, and have sung them to anyone willing to listen. They've marched around spinning tales of the Abominable Snowman and Rudolph. Mal's wounds have recovered and she is happy, strong and vibrant. She got a stylish, short new haircut that will hopefully lessen the impact of the side effects of radiation. In true Missouri fashion, we got two inches of snow and the kids got to go sledding for the first time ever, and then the next day it was 60 degrees outside and the kids got to play outside wearing only a windbreaker as a coat. Visits from out of town friends, a trip to Chuck E Cheese, the season has been packed with reasons to smile.

Radiation starts in a week. Rachel and I are scared, but we are not going to let that fear rule us. I have slept easier the last week or so, but I know the fear will creep back in eventually. We kept Micah and Mal's signs from church, and so every time I feel a bit down, I plan on breaking one of them out and asking the kids what it says. I'm sure they'll remind me. Christmas Fear is natural. But so is Christmas Faith.

*** I believe that many other people might be moved by Pastor Christiansen's message, and so I have posted an audio link to it below. If any of you have been struggling with fear, or just need to hear an uplifting message, enjoy. I hope it brings as much relief to you as it has for us. As an added bonus, Pastor mentions our family at around the twenty minute mark, so also listen up for our 15 minutes of pulpit fame. ***

Merry Christmas!

Sunday, December 18, 2011

Charting a Course

There are many ways to get from Point A on a map to Point B. For us right now, Point A is current time and place. Mal is essentially recovered from her surgeries, and is as strong, vivacious and energetic as she has ever been. However, we know she stands a good chance of her cancer coming back if we do not take action - so we have to get to Point B. Point B is remission. Hopefully Mal will be as smart, capable and full of life once we get to Point B as she is now, and will also be much safer. There are many ways to get to Point B. We have chosen ours.

After many hours of deliberation, prayer, research and conversation, Rachel and I decided not to enroll Malorie in the clinical trial. We simply could not come to grips with the lack of evidence that the chemotherapy would provide a benefit. There is the chance that it would. We were not willing to pay the price to see if that chance came to fruition. As we discussed the trial with doctors, we also learned that all patients enrolled in the clinical trial would be treated with radiation to a smaller diameter around the tumor. I am not sure why this wasn't mentioned to us before we met with the radiation oncologist, as this information may have swayed our decision had we known more about it earlier, but we are comfortable with our decision nonetheless.

Malorie will get localized radiation to the area surrounding where her tumor was located in the fourth ventricle of the brain. Because they can localize the treatment, they can limit some of the complications that can arise due to the exposure to radiation. The upper chambers of her brain should not be affected by the radiation, meaning that she should suffer no cognitive impairments due to treatment (although she will be monitored for this through and after radiation). However, the radiation beams will have to exit through the front of her mouth and throat, which puts her at a high risk of having problems with her pituitary and thyroid glands. She will be seen by a doctor for several years that will specifically monitor her body's production of key hormones. This endocrinologist will treat Mal for any problems that may arise. There are also some more severe problems that may arise long term, but they are less and less likely the more and more severe they get, so for now Rachel and I are focusing on the short term effects of the radiation.

We were told by several people that Mal will likely not feel a lot from the radiation for the first few weeks of treatment. The radiation will slowly build in her system. But by the last week or two of the treatments, she will likely really be fatigued and possible not want to eat much. We have also been told that because of the localized treatment, nausea should not be much of an issue for us, so we are happy for that. However, the radiation oncologist did warn us that in addition to hair loss, Mal may also suffer some dry skin or minor burns to the site of the treatments.

Last week, on Friday, Mal got another MRI. Next Thursday she will get a CT scan, and those two images of her brain will couple to make the map of her brain that will be used to perform the radiation treatments. On January 5th, Mal will get a PICC Line embedded IV device implanted in her arm and chest, so that during radiation she will not have to get an IV everyday. Then, on January 6th we will begin her radiation treatments. Barring medical setbacks, we will arrive at Point B, radiation complete and the hope of remission on February 22nd (which ironically enough is one year to the day that I finished my final tour in the Navy and Rach and the twins boarded a plane for St. Louis). I just hope we picked a path with minimal road blocks and speed bumps.

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.

Friday, December 9, 2011

The Waiting Game - Update II

I have been solemn for what seems like a year, especially for a cut-up like me. Tonight, I am cutting loose. Mal's results from her CSF scan came back negative for any cancer cells. Not only does this increase her chances of beating this cancer, but it also enables us to have only the localized radiation. Localized radiation, which will only be administered to the site of her brain tumor, will greatly reduce the permanent effects of the radiation. She stands a far lesser chance of suffering learning disabilities related to the treatment, and she should not have any problems with her growth, which could have been stunted if she needed spinal radiation.

I feel like we are dodging bullet right and left - the tumor was completely removed - there was no permanent damage to Malorie's nervous system during the removal of the tumor - no additional tumors in the brain or spine - no cancer cells in her cerebral-spinal fluid. I am tremendously grateful to God for seeing us through these hurdles. So tonight, I am happy. Tomorrow, we begin to determine the course of treatment that will bring us again to the depths of despair. But tonight, tonight I reflect and say thanks.

Thursday, December 8, 2011

The Waiting Game - Update

The results from Mal's spinal MRI came back with positive results. No tumors found, no signs of distress. The offending blood vessel is still there, and is still just a blood vessel. We are still, as patiently as possible, awaiting the results of the CSF cytology test. Thank you for all your prayers, love and encouragement.

Tuesday, December 6, 2011

The Waiting Game

Let's play a game. It's called The Waiting Game, and here's how you play. Step one is to pick something that is utterly, devastatingly important to you. Step two: do nothing... wait and see what happens. Simple game, right?

I used to play the waiting game on things that I thought were important. In high school I would stare at the back of the heads of the most recent object of my affection and wait to see if they noticed me. In college, I learned to ration food. It wasn't that I was too poor, or had an eating disorder. It was just that if I waited long enough, my roommates would probably order pizza or grill something that was better than the Top Ramen and hot dogs I had in the pantry. Heck, my whole life I have been waiting for my favorite baseball team to field a team capable of winning a World Series - mercilessly checking box scores while detached overseas and reading countless articles about baseball players that could improve their lot.

Waiting on the results of Mal's scans has turned into the ultimate exercise in patience that I can imagine. During her initial scans, doctors noticed a spot on her spine that worried them. In a normal child, they would assume it was a couple of inflamed blood vessels. For a child who just had a brain tumor removed, it is a red flag. Additionally, Mal needed a CSF screening to test for cancer cells in her spinal fluid; a scan that is par for the course in the treatment of children with ependymomas. However, we had to wait until ten days after her ventriculostomy tube was removed to get the scans. Ten days came and passed, and Mal caught a cold. Her tests were delayed.

To pass the time while waiting for Mal's scans over the weekend, Rachel and I tried numerous pursuits to varying degrees of success. We broke down the cribs and moved the twins into "big kid beds" in their own separate rooms. Mostly, we did this to prepare for radiation, when we will have one sick kid and one well kid. Micah didn't particularly want to move into his own room, but in Rachel's words, "he sucked it up." Both kids have done exceptionally well in their own beds, so that only took about four hours of time.

Rach and I also attempted to watch a movie for the first time in ages. We had cocktails. We hung Christmas decorations. We took my car to the shop. Twice. We did Elf on the Shelf with the kids (who named the Elf "Bumble Fred Buster," which is Italian for "We refuse to agree on anything"). We gave the kids hot cocoa for the first time. All of these things helped pass the time, but did little to diminish the agony of watching every second tick off the clock.

Finally the waiting ended and Mal got her scans today. She hated going back to the hospital, but didn't really lose her composure until she saw the hospital bed. She refused to climb into it until she was unconscious. Mal's tests were performed, but in the ultimate tragi-comedy that is life, the one result we could have gotten today (MRI) was not revealed to us because the people who read the MRIs had all gone home for the day by the time Mal's tests were complete. We are still playing The Waiting Game. We should hear back tomorrow on that one, and then another 24 to 48 hours after that get the results of the CSF test. In what we can only hope is not a preview of the tempest to come, Mal had a forty minute marathon fit, complete with kicking, screaming, punching and tearing off of bandages while coming out from under anesthesia.

In the Waiting Game, as in the game of life, patience is a virtue. Patience may be hard to come by, but good things come to those who wait. I never went dateless to a high school dance. Casey and Ryan were always game for grilling or ordering pizza. The Cubs will eventually win. Mal's scans will come in, and regardless of whether or not they are in our favor, we will be alright. See, I forgot to mention only rule of The Waiting Game: Don't let life pass you by. That's the secret to this game, because it's the only way you'll win. Because even if you get what you've been waiting for all along, if you concentrate on only waiting, you will have missed out on a lot of really cool stuff. So even as brutal as it has been, I'm glad to have played The Waiting Game this weekend.