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.

Tuesday, November 29, 2011

Normal

I never have been too sure what "normal" means. Is it the same thing as average? Statistically speaking, is it a median, a mean or a mode? Is it supposed to be the way I feel most of the time, or just a general lack of happiness or sadness? You know, just that middle state of grey. Regardless of what normal is supposed to mean, it keeps popping up. People ask if we are getting back to normal. Typically, I just shrug.




Some things are back to the way they were pre-sickness, and so that's great. Malorie has had a great week back home - she is eating healthy, full meals, which she didn't do for a long time. Her energy is back up to around where it was before she initially went downhill, and we see no deficiencies in her cognition, speech or mobility. She's has no issues with vomiting or constipation, and is completely off of her laxative that the doctors said she would likely need to keep her intestines moving. She is still a little bit ginger in her movements, slower than before, but I think that is just the recovery from her surgery. She is also still pretty sensitive around anyone other than her mother and me, and Mal has also gotten very demanding, which is something Rachel and I keep saying we will work on, but then we just give in to her. Mal's swelling along her incision where the tumor was is still worrisome to us, but the doctors say it is normal and will take another week to two weeks to go down. She and Micah are still two peas in a pod.


During the days, Rachel and I have resumed what I guess I would call "normal" activities. Rachel is back into parenting mode; teaching and playing and being a great wife and mother like always. I have gone back to work for the time being, and am filling my days with thoughts of airplanes and submarines. But then once the kids are in bed, the nights get a bit rough. We start to think about how difficult the next few weeks are going to be, and it gets tough to keep a positive outlook. The sadness and worry are palpable.


I think Rachel and I are both struggling with how to come to grips with the fact that Malorie may still have malignant cells growing in her body. We try our best to cast our anxiety to the heavens, but we still find ourselves dwelling on the upcoming scans to test for spinal tumors and cancer cells in Mal's cerebral-spinal fluid. We have both avoided calling family and friends because we get exhausted from talking about it...thinking about it...living it. Tonight, we realized that Mal will not be able to eat breakfast for 6 straight weeks during radiation, because she will be anesthetized daily. We have to figure out how we will feed Micah without Malorie wondering why she isn't allowed to eat or drink in the mornings. Breakfast is typically a minor detail. Now it feels overwhelming, sad, troublesome.


So, no, I guess things aren't normal, per se. Things are good right now, but they are good with an asterisk. It is like that summer day that is spent bracing for a terrible storm that is approaching. No matter how nice things are now, we know it will not remain for long, so we make the best of the situation. While we may feel average, like things are neither great nor terrible, we know there is still a fight looming. We are not back to normal. But I can't wait to say that we are once again normal... whatever that means.

Wednesday, November 23, 2011

There's No Place Like Home

Dorothy, click those ruby heels, girl! OK, sorry to spoil the ending, but we got to go home from the hospital yesterday. After significant hemming and hawing by the doctors on Monday, they finally decided that if Mal could keep three consecutive meals down and drink enough fluid on her own to negate the need for an IV, she could go home.


The fluids thing was easy. Following Mal's early morning surgery Monday to have the ventriculostomy tube removed from her head, they allowed her IV to also be disconnected. She still had the port there in her vein, just not connected to anything. So, every time she told me she didn't want a drink, I told her that she needed to take a drink or the nurse would have to come and hook her "arm tube" back up and she would start guzzling. It worked wonders, but I am sure I cursed myself. Dollars to donuts that the next time she has to have an IV, she will start yelling for a drink (or in Mal terms, "A Dink! A Dink!") so she can get the IV taken off.


The holding food down was another matter. Mal threw up two of her three meals on Saturday, but after being put on Zofran for anti-nausea on Sunday she kept all her meals down. However, Dr. Smyth said that nausea is a common side effect for someone who just had a tumor removed where Mal did, because it has thrown off the balance in her nerve center. Her body had gotten accustomed to having the pressure from the tumor there, so now that it is gone she is going to have to readjust. After Monday morning's procedure to remove the tube, Mal held down her lunch and dinner on her own with no drugs. We thought we were on line for a Tuesday lunch at home, but Mal was not able to stomach her breakfast Tuesday morning. We were doomed; destined to sleep another night at the hospital.


But then the doctors decided that holding three consecutive meals down was overrated, and that Mal needed to eat a good lunch, and then she could go home. So, in turn, Mal then basically refused to eat lunch. She ate a quarter of a yogurt and a pack of baby food applesauce, but nothing of substance. The doctors convened again, and decided if she ate a good snack after nap she could go home. I'm pretty sure that if she didn't eat a snack the doctors would have then said, "Well, she's still breathing, so let's go ahead and send her home," but Mal made the comically moving target stop by eating a nice snack and punching her ticket home.


Rachel and I were pretty worried about Mal coming home because she still was not herself over the last week since the surgeries. She was speaking, but in small sentences - only one to two words here and there. Also, she was not moving all that well, but the doctors assured us she would do better at home. I winked and pretended to believe, but still worried. But as soon as we got Mal in the car seated next to her brother and headed home, she morphed into another girl. She started chatting it up with Micah in the backseat, then got home and ran (gingerly) a few laps around the house, hugged the dog and then ate the biggest dinner I have seen her eat in a month. Rachel and I seriously considered cutting her off at least three times, but we kept letting her eat, and she never got sick. It's true, there's no place like home!


Epilogue: So, no story ever ends that conveniently, right? Mal made it about 18 hours home from the hospital before we had to take her back in there. Today her incision along the back of her head swelled up so we called Dr. Smyth. He asked to take a look at her to see if it had gotten infected. However, luckily for us it was just a pooling of fluid near the area where the tumor was removed. He said it should go down in a few days, and just to be careful with it - so apparently no tackle football for Mal tomorrow on Thanksgiving. Bummer.

Sunday, November 20, 2011

The Onset of Annoyance

I can almost always feel it. That tipping point that moves me from my standard, go-with-the-flow attitude to one of frustration. Almost invariably, it is not some catastrophic event that breaks me. It is some minor frustration that I can't release. I carry it, and then another one comes and builds on top. Then another, and another until frustration turns to annoyance, annoyance to anger, anger to full scale nuclear meltdown in the making.


Yesterday, Malorie got a roommate. No problem. She's a wonderful kid, 6 years old, just out of major back surgery to correct a developmental problem in her spine. She has a nice enough mother. Then Malorie, after having thrown up her dinner the night before, threw up her breakfast. I can start to feel the worry bubbling in my gut, but I remain calm. At lunch, Mal barely eats. When she does, she gags and almost vomits. I gnash my teeth and utter words of encouragement, but I can start to feel it coming. Rachel and I call for the nurse. She tells us that Mal probably has a stomach virus, which is the same diagnosis we heard for 7 weeks leading up to the discovery of her brain tumor. Flip the switch - Ladies and gentlemen, I am annoyed.


Mal's roommate, Courtney has to be moved every few hours to ensure her spine heals correctly. As a rational person, I understand this must be done and that it most likely hurts her badly. Courtney cries in pain, waking Mal ten minutes into her nap. Annoyed, I roll my eyes and clench my jaw. Mal is too smart for her age. She takes one look around the room and realizes Rachel is not there. Rach went home to tend to Micah, who is fighting a terrible cold. Mal cries out for Mommy. Frustrated, I swallow hard and take a deep breath. Mal's afternoon is one trial after another. If Barney is on the TV, she wants to watch Dora. If Dora is on, she wants Elmo. When I turn Elmo on she rolls over and cries. Aggravated, I crack my neck and pop my knuckles to distract myself. Dinner time comes. Mal eats well, and then vomits again. Third time in four meals. I tell the stomach bug diagnosing nurse to call a doctor, who proceeds to come in and tell me Mal has a stomach bug. It takes all my patience left not to ask where his office is so I can go down there, remove the degree he earned from some hackney, two-bit college off the wall and light it on fire. Mal's bedtime comes, and her roommate Courtney is watching a movie. The curtain between the beds shelters less light than it does sound, which means to say zero. A nurse enters and in a full volume voice tells Courtney that she has seen this movie.


At this point I can feel something weird happening. My left ear is morphing into the shape of the handle of a teapot. My right ear is becoming distended, long, and up bending: a spout. I can feel my face start to turn red and my blood boils and the top of my head starts to rattle along my hairline as steam whistles out my right ear. I have watched far too many cartoons in my life.


People have always told me that Mal bears a strong resemblance to me. She has dark hair, brown eyes, and high set cheeks. But only now do I start to see the resemblance. Mal rolls over in her bed. She is annoyed, and I can tell because I am annoyed too. Her eyes burn through me in unblinking fury. She wants the lights out and the movie turned off. She kicks her feet and sighs. She reaches up to rip the tube out of the top of her head. She is tired of dancing with/stepping on/sleeping on it. Her fingers tell the story of her frustration. They are tense, rigid and fidgety. She is my daughter.


Eventually the nurse leaves, the movie ends and the lights turn out. Mal falls into a restless sleep and the first few times the nurse awakens her to check her pupils and IV she is still mad. But her anger fades as the night progresses, as does mine. By morning, we are again normal. Rational. Accepting,


Today brought deliverance from the annoyances of yesterday. I got to go home and take a long, scalding shower. I played with Micah. I opened mail. I spent three hours pretending like my daughter didn't have brain cancer. Rachel arrived fresh with optimism and got Mal to eat three meals without vomiting. The extra energy served her well as Mal played with toys in bed, colored a picture and even went for a wagon ride. And as if on cue from a movie, the nurses moved Courtney to her own room. As I walked down the hall tonight, well after Mal had fallen asleep, I could hear the sounds of the Disney Channel coming out of Courtney's room. I smiled, and said a quick prayer that she feels better soon.

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.

Time Slips Away

Today marks a week since Mal's hospitalization. It seems like a century of events have occurred since last Friday, and even since I last wrote an entry on Mal's progress. She has been wowing the doctors and nurses with her brute will not move, be it to wiggle in bed, pull her arms/legs away from someone trying to take a temperature reading, or getting up and walking. That's right, Mal skipped right over a couple milestones and just decided she could get up and walk. On Thursday, Mal started moving her head from side to side on her own. Then, her physical therapist tried to get Mal to sit up in bed, but Mal was not a fan of that. Miss Jill, the physical therapist, told us that Mal was normal, and like all other kids hated her physical therapist. She gave Rachel and I some exercises to work on with Mal, like sitting up by herself and sitting in a chair. Later that night, Mal sat up with my aid and then balanced for about 20 seconds before she wanted to lie down.



Mal's big breakthrough came at about midnight last night, when she rolled over on her stomach in bed. She was trying to get comfortable, but couldn't negotiate the tube running from her head, so she grabbed at it and tried to rip it out. We stopped her and called for the nurse, which infuriated Malorie. She then pushed up into the crawling position and tried to stand up on her own. We pulled her back down into the bed, defeated her next 2.4 million attempts to grab at her tube, and then watched as she fell asleep.


This morning, on a full night of rest, Mal was a bit more amenable to the idea of sitting up. We got her to sit up, and even climb into a kid chair. Instead of having me lift her into the chair, Mal wanted to get in herself, so she stood up and got in. This, of course, made our jaws drop, so we asked if she wanted to walk around. She wanted pants and shoes first, and I can't blame her. I like to wear pants too. Anyway, Mal then proceeded to walk with support around her room a couple of times and even ventured out to the nurses' station. When she got out to the hallway, a bunch of onlookers started telling her she was doing a great job, so she immediately decided she needed to lay down. I made her walk back to her bed, where she settled in for a nice nap.


Also, the visitors just keep rolling through, but one very important little man came to see Mal yesterday. Micah made his first visit to see Mal, and was a bit excited to see her. When told he was going to see Mal, he started dancing. As Micah arrived into the room, his excitement blended with fear as he saw her for the first time with the bandages, but he managed well. After talking it over with him, he even climbed into her hospital bed to check out Mal's personal TV. Micah ate dinner up here with us and then I took him home to put him to sleep there.


Mal is constantly pulling at her ventriculostomy tube, which bothers her to no end. The doctors have been able to increase her cranial pressure to 20 cm, and believe that she may be able to get the tube removed by Sunday. That, of course, can't happen soon enough for us, as we battle around the clock to keep Mal from touching and tugging on the thing. The fact that her progress is going so well leads us to believe that Mal will not need a shunt put in for permanent drainage, but we will have to wait to ensure she maintains positive progress for now.


OK, as with most things, time has again slipped away from me. Mal is waking now from her nap and I need to spend time with her. I can't wait to see what she does next.

Thursday, November 17, 2011

How in the World Did We Get to Here?

NOTE: These are all old pictures, and not from today. Mal is not up walking around yet, and does not have the ventriculostomy tube out yet.

Two questions have repeatedly been asked of Rachel and me since last Friday: "How did they know to give Mal an MRI?" and "Why didn't they catch it sooner?" The first question is a bit easier to address than the second. Because Rachel is a teacher and I am a ridiculously meticulous note taker, we began to take notes on Mal's condition, so as to better explain it to doctors. Since the notes have more information on the first question, I will tackle it first. That way, most people will get bored and not have to read my gross oversimplification while answering the second question anyway.

Mal's medical odyssey began the last week of September. On the Thursday of that week, September 28th, Mal began acting lethargic. She did not have a fever, and was not acting in any way funny other than not wanting to do things that normally interested her. We chocked it up to a mild virus and gave her some Tylenol. By Saturday of that week, the Tylenol was not helping to make her feel better, and she vomited for the first time. By Sunday, we thought it best for Mal to be seen by her pediatrician to get checked for an ear infection or strep throat, but she was negative. We still assumed she had a virus and she came back home. Over the next few days we watched in fear as Mal's symptoms got worse and worse. By Tuesday, Mal had stopped eating or drinking without being coerced and kept curling up into the fetal position and not answering any of our questions. We took her back to the pediatrician, who clearly saw something was not right. She sent Mal to St. John's hospital for some blood work to see if she had some signs of problems like leukemia, diabetes or meningitis. All of her lab work came back normal, so we were again sent home.

The very next day, Wednesday, October 5th, we had to take Mal back to the doctor. She had stopped eating or drinking anything, and we could not get her to respond to us at all. She just was lying on the floor, staring off into the distance. It was one of the most frightening times of Rachel and my life, as we clearly knew something was wrong. We took her back to St. John's where she was seen in the ER. They re-ran all of her lab work that had just been done a day prior, and saw no problems. Several ER docs noted that Mal was very stiff, though, and didn't move well at all, so they were afraid she had spinal meningitis. While we were waiting for a lumbar puncture, Rachel and I noted to the doctors that Mal had not had a bowel movement for four days, which was an unusually long time for her. The docs decided that since the blood work should have shown some signals of meningitis, they would get her an abdominal x-ray instead. The x-ray showed that Mal was severely backed up with feces throughout her entire intestines - so badly that she could not even pass gas. Mal was given an enema, and once that was completed she fell asleep. The doctors assumed that meant she felt better, so we were discharged.

The next day, Mal woke up, ate a big breakfast and then threw it up. We took her back to the pediatrician, and they noted that she was moving better and now responding to our questions, so we all assumed she was on the way back. However, Mal threw up her breakfast the next morning, and still was not pooping or eating the way she should. On doctor's advice, we gave Mal a home enema, and then tripled her dose of the laxative she was prescribed at the ER two days earlier. For the next week, we tinkered with her dose of laxative alternating between diarrhea and constipation. Mal's energy also never returned and she began to complain of not being able to walk. We wrote that all in our notes, and then told her that we knew she was sick but she had to be a big girl. Eventually, she either got up and walked or we picked her up and carried her. By a week later, Wednesday, October 12th, Mal had just not improved enough. Although she was responding to us again, and not constantly curling up into a ball on the floor, she was just not the girl we had come to know. Her energy was gone, she vomited at least once a day, skipped meals, was overly-sensitive, and slept much more than usual. We took her back to the ER, this time to Cardinal Glennon Children's Hospital for help. They gave her another x-ray, determined she was constipated, administered an enema and sent us home.

That was the point where Rachel got mad. I continued to assume that Mal's condition would improve, and since I was spending 12 to 14 hours a day at work, I would see snippets of the old Mal when I came home and assumed she was improving. That Friday night Rachel told me she had called a family friend who was working the ER at Cardinal Glennon. He told her that he would take Mal in the ER and admit her to the hospital to determine what was really wrong with her. He, like Rachel, believed that Mal's constipation was a symptom and not the cause of her problems. All parental guilt aside, I did not agree with taking Mal in, but Rachel convinced me to do so. Mal was admitted to Cardinal Glennon that weekend and stayed for three days.

Over the course of the three days, doctors gave Mal a battery of tests. She was given blood tests, neuro screenings, monitored, poked, prodded and bothered by doctors for 72 hours. Not a single one of them thought Mal looked well, but they all could not find a thing wrong with her test results. While in the hospital, Malorie threw up three of her seven meals. We were told it was probably because her intestines had been through so much stress over the past few weeks from the constipation. Doctors thought she showed all the signs of having mononucleosis, but her three tests for mono all came back negative. There is a high rate of false negative tests for mono is children under five, though. Mal was treated for dehydration, diagnosed with a mono type virus and we were discharged. We were advised to put Mal on a high fiber diet and told to wait it out.

For the next two weeks Mal showed signs of being fine. She would play, but in hindsight it was not the same as it had been before the initial problems appeared. As Rachel and I watched some videos with Mal in the PICU the other night, we were amazed at the pre-illness videos. She was so strong, vibrant, eyes wide and full of life. The videos during the illness, much like the "Take Me Out to the Ballgame" one I posted, showed a hollow shell of our Malorie. We had just been immersed in that kid for so long; we didn't recognize she still wasn't right.

By Halloween, Mal was back on the way down. She began throwing up in her crib first thing in the morning. What had been sporadic vomiting during this saga became more and more pronounced. Over the eleven days from November 1st through November 10th, Mal vomited 18 times. Over the entire time, the pediatrician had been very involved in how Mal was doing. We called her and asked her to see Mal again on Monday, November 8th. Our pediatrician recommended that we go to a gastro-intestinal specialist to better diagnose what had been going on with Mal.

The pediatrician estimated it would take a few weeks to get seen. However, Rachel's inside connections paid off, as she called a very good friend whose mother worked as a receptionist for a GI specialist. We got booked for two days later, November 10th, with Dr. Brady. Dr. Brady saw Mal in her office, and asked if we had gotten a CT scan or MRI yet. When we told her we had not, she ordered it. She also thought Mal was symptomatic of celiac disease, so we went on a gluten free diet for all of 36 hours. We went in on Friday to get the MRI and that is how we found the tumor.

The second question, "Why didn't they catch it sooner?" as I said, is a bit trickier. Doctors believe that Mal's tumor had been growing for several months, so any CT or MRI of the head would have caught it months ago. However, I truly feel that every medical professional did their very best to diagnose my child. At no point did I say, "Hey look, my kid is constipated and I think she has a brain tumor!" However, it is particularly disheartening that Mal was seen by neuro specialists over a month ago and no tests were run. In their defense, Mal was asymptomatic; her reflexes looked good and her pupils reacted normally to light. While the irrational parent in me does want to pin blame on someone for not catching this, I don't think that's fair to do so.

Instead, I think the better tactic is to focus on the heroes whose work eventually saved Mal's life. I thank God at night for Rachel being such a persistent and well-connected mother. I often give her grief for her slap-dash medical diagnoses (she told me a week ago that she thought Mal might be bulimic), but she is a protector, and she is the best wife I can ever imagine. Also, I give thanks for Dr. Brady going above and beyond her medical specialty to try to help Mal. Her MRI proved to be the deciding factor in finding out what was wrong with Mal. Also, I want to thank Jess, Travis, Jenna, Carol Z. and the host of other supporters that have long known that Mal wasn't right and weren't satisfied with sitting back and doing nothing. They are fighters, and it's good to have people like that on your side.

Finally, a note of caution for all our friends with hypochondriac tendencies out there: if you go to a doctor and say, "My kid is constipated and I think he/she might have a brain tumor!" they might institutionalize you. You might be crazy. But you might also be right.

Wednesday, November 16, 2011

Moving Day

Mal's Wednesday got an early start. Because she slept through most of Tuesday, and was only up in fits and spurts, we were waiting and ready for her to finally show some signs that she wanted to stay awake for a longer period of time. However, I am not sure I was prepared for her to want to stay up all night with me. Malorie woke up during her nurse's 2 a.m. check, and then stayed awake until about 4:15. I entertained her as best I could by half-singing/half-yawning songs and telling stories that only make sense at 3 a.m. Then, just after I got Mal to close her eyes and fall asleep, Rachel came in out of the parent's lounge to let me go out and get some rest. What she didn't tell me was that the chair she saved for me was next to a guy who had a bad snoring problem and that he was sawing more logs than Paul Bunyan. I think it was quieter in the PICU than out next to Rip Van Obstructed Nostril.



The daylight hours got off to a poor start as Mal's neurosurgeon said that her brain drained about one-third of what it did on Sunday, but it was still draining too much Cerebral Spinal Fluid to allow her to increase the pressure in her head. That means she will have the ventriculostomy tube in for a bit longer than originally hoped. Also, Mal's IV in her right arm infiltrated, which I learned has a medical definition that has nothing to do with commandos repelling out of a helicopter for a black ops mission. Actually, her vein became too saturated with fluids and leaked it all out into her tissues in her arm. Her arm swelled to about three times it's normal size, and she had to get all three of her IVs pulled and then a new one put in on her left forearm.


After our dual setbacks, though, the day got moving in the right direction when Mal passed her swallow study test. She had to demonstrate that she could still swallow fluids and food, which she did with ease and then asked for more. By the end of the day Wednesday she had the best appetite we have seen from her in almost a week. She still is obsessed with Cocoa Puffs though, as she asked for "cock-a-doodle-doos" nonstop after we asked her what she wanted to eat. We succeeded in convincing her to try something else, too, as she saw Rachel's Cheeto and then asked for some of that, too. Cheetos and Cocoa Puffs, not too sure how high in those brain building Omega 3 fatty acids they are, but man do they taste good together.


Also Malorie had her first physical therapy session, which consisted of reaching a grabbing, and lifting her feet from the prone position. Her next big hurdle to attempt tomorrow is to sit up (with help) and then stay sitting upright (without help). If she can do that, then they will have her attempting layups by Friday and hook shots by Saturday. OK, that is a bit of a fabrication, but I am going on less than 3 hours of sleep. The next test on Friday will be sitting upright with her legs dangling, which moves some blood from the head to the feet, and may make her nauseous.


At around 1:30, Mal was allowed to depart the PICU for her own room up on the 12th floor. Immediately when we got there, Rachel began unpacking gifts and planning where to hang cards and pictures for Mal. We called to schedule a visit for Micah during the dinnertime hour, but then Mal had another meltdown when she was awakened from a nap after only ten minutes. She was shouting at the nurse and at both Rachel and me, and very distraught. We got her to calm down and then fall back asleep, but decided to wait another day or so before we bring Micah in so as not to freak him out entirely.


Yet again today I feel compelled to send a massive thanks to everyone who has been rooting and praying and hoping for Malorie. As her parents, we think she's a pretty special child, and we are just now finding out how many other people feel the same. Thanks again, and please keep us in your thoughts and prayers as we await the results of her biopsy and subsequent treatment plan. Also pray for the other parents in the PICU tonight, as I hope they get to move out with an improving kid soon, too.

Tuesday

Tuesday brought progress and more reason for hope that things would turn out well for Mal. The swelling in her tongue had subsided by the time that her post-op MRI was performed, so she was allowed to take out her breathing tube. As soon as the tube was out of her throat, she whispered, "Godi, Godi, Godi," to me, and I grabbed her blankets. As soon as she had a hold on the tags, she fell asleep and remained that way for most of the day.

Mal's post-op MRI looked great, as expected. There were no signs of residual tumor in any other area of her brain, and she did not suffer any bleeding on the brain or strokes during the night. The doctor did say that she was still a bit swollen in there, so she might have to keep in the ventriculostomy tube for one extra day. I thought that saying "ventriculostomy tube" was a bit cumbersome, so I started calling it her brain drain, but Rachel didn't find it quite as witty as I did.

We got a chance to talk to the surgeon, Dy Smyth, as well as Mal's oncologist, Dr. Hanson. Dr. Smyth said that the tumor was the size of a small plum or a big golf ball. He also said that he was not willing to wager on anything, but he thinks Mal's tumor was a grade 2 ependymoma. He said that a grade 2 is cancerous, but slower growing than a grade 3 and 4, so that would open up more options to delay treatment. The oncologist, Dr. Hanson, said that if it was a grade 2, he will advocate to not do radiation unless another tumor appears, because as long as we do MRIs every few months for the first few years, we will catch something before it gets really bad again. He also said that he has seen several cases where a rogue cell mutates and becomes cancerous in a toddlers developing brain. Once that cell is eliminated, as the toddler grows, the brain develops less and less, and the risk of recurrence becomes less and less likely. So, if it is a grade 2 ependymoma, and the council of doctors hearing her case agrees, we may just take a wait and see approach. We would like that very much, because aside from a periodic MRI (every 2 months or so at first) Mal would be a normal kid again, just at a risk for recurrence of brain cancer. Also, they said that since Micah and Mal are fraternal twins, Micah stands no greater risk than any other kid of having a brain tumor, so we don't need to get him checked unless he begins to present symptoms.

Speaking of Micah, he is really starting to worry about and miss his twin sister. Tuesday morning Rachel went home to shower and spend some time with him, he kept inquiring about Mal. Then, when Rachel wanted to leave to come back to see Mal, he kept saying, "Micah go to see Mall too," and "Micah sick too." We want to bring him up to see her, but not in the ICU with all the monitors and the flurry of nurses and doctors. We think he will do much better when she is in her own room, and hopefully a bit more awake and alert.

Tuesday also brought more great visitors for Mal, as my Uncle J and Aunt Claudie, as well as my mother and Rachel's parents, Chris, Jess and several other people all came to see Mal. Although she doesn't know it yet, she is quite a blessed girl, and will have a big group of people that know her and are proud of the strength she's displayed for a long time.

Tuesday, November 15, 2011

Perception vs Reality

Perception is a funny thing. Two equally intelligent individuals can watch identical events with the same factual basis uncontested between the two, and yet still believe they saw something entirely different. It happens all the time. A waitress comes up to take an order and is extra-friendly. The husband thinks she's nice. The wife thinks she's a flirt.

Yesterday, during an especially low point of patience, I pointed to the Bible on the table. It was a brand new Children's Bible that Chris gave Mal earlier that morning. The cellophane had just been removed from it, and I think one or two people had thumbed through it to look at the illustrations. I looked at Rach and said, "Just flip to a page, any page, and let's read." We both needed some comfort and a distraction from waiting for the phone to ring with an update. Rachel reached to the middle of the book and flipped the Bible open. It opened to John 6, the book and verse that describes Jesus' miracles. We read of Jesus feeding the masses, walking on water and declaring that he was the bread of heaven. You may look at those facts as a random occurrence. I perceive it to be divine intervention.

Yesterday was a brutal day on many levels, but overall we are overjoyed. The removal of Mal's tumor was by all accounts of the surgeons a success, and she suffered no nerve damage in the process. It was fused to the nerves and spine in two places, and would have likely been worse had we not caught it when we did. The bad news is that there is a high chance that Mal will need to undergo further treatment for cancer. I think that Rachel and I are the only parents in the history of the world that were told our kid probably had cancer and it still couldn't sink our spirits. Again, it's all about perception. There is a long road ahead, and many challenges to come. We could choose to focus on that. But we saw something truly amazing accomplished yesterday, and very soon we will get our little girl back. I perceive the situation was the best possible outcome for yesterday. Mal is intact, and now we will wait for the lab to perform the biopsy.

As for the princess, she remained intubated and in an induced sleep overnight. Still, she was restless and had to have her arms strapped to the bed to restrain her from trying to pry out her tubes in her sleep. She is undergoing an MRI as I type this to check for any residual tumor that was not detected before, as well as hemorrhaging or stroke. With all the monitoring that has gone on since the surgery, they told us there is a very low likelihood they will find anything abnormal, but we still need to check. Malorie also had neuro-sensors placed on her tongue that checked the stimulus to the brain during the surgery. That, combined with laying face down for 11 hours caused some swelling in her tongue, and so the doctors are concerned that she will be unable to collect her saliva and swallow, thus precluding her from breathing on her own right now. Because Mal has earned a feisty reputation over the past couple days (ripping out her own catheter, biting the nurse who put in her breathing tube while she was in an induced sleep, etc.), they will likely keep her in a sleep until the swelling subsides, but they will be checking that periodically throughout the day. Mal's earned reputation has also come with some benefits, as she's seemingly won the hearts of many of the staff here. Yesterday, when we arrived back to the room, she had a gift from Kendra and the Judkins family waiting here for her. When we got to the PICU on Friday, they laid the groundrules that any gifts had to be removed from the room to keep it clear for the medical personnel. Last night, Mal's nurses tied her oversized Elmo balloon to a table in her room. "As long as it doesn't touch any monitors, the doors, curtains or doctors... it can stay," they told us.

As for Rachel and me, we are exhausted. I got some good sleep considering it was in an ICU room last night, and Rach and I traded off a couple hours in the parent's lounge for rest as well. I am truly speechless at the acts of kindness that were showered upon our family. We have long known we were loved, but I don't think any of us imagined it was to this extent. On behalf of my entire family, I thank all of you for your thoughts, prayers and kind words to us during this difficult time. You have provided more comfort that you can know.

A lot of times public displays of faith come off as forced and a bit overdone to me. I believe that Jesus knows the content of my heart and thus I know it is probably unnecessary for me to type this in a public forum, but I feel compelled to do so. Thank you Jesus for guarding Malorie yesterday and bringing her back to us. I can never repay you; but that's the point, right? I have long held it as reality that Christ has a presence in my life, but from yesterday forward, my perception of that presence has changed.

Monday, November 14, 2011

Monday (Updated at 11:00)

This morning Mal woke up with me laying next to her in her hospital bed, and Rachel sitting on the bed near her feet. She rolled over, looked around and then asked, "Where's Micah?" She was in good spirits, and her nurse Melissa stayed after she clocked out just to push Mal's bed down to the operating room. Mal really bonded with her over the last three nights, and last night Mal let her change her diaper for the first time - which was a huge step for both Melissa and Mal.

At around 7:45 Mal was given a drug to make her sleepy but not knock her out. Rachel and I told her that we loved her and that we'd be here waiting for her when she got back. She then said, "Love you" to the both of us and laid down. She started to call for us as they pushed her into the operating room, but we stayed strong until she was out of sight.

The first two hours of the procedure will be placing sensors all over her body to test her neurological reactions during the surgery. Then the work of removing the tumor will begin.

At around 2 the surgeons called for the third time. They offered encouraging news about the progress of the surgery. The woman on the phone said there had been no complications as of yet, and that Malorie is holding up nicely. She has not needed a blood transfusion and her vitals are strong. The team is expected to call again in about an hour, and we are hopeful that this will be the time that they tell us that Mal's surgery is complete, a success, and that the tumor is benign. A lot of times in moments of crisis, I forget to thank the Lord for all He has given me. Thank you God for providing me comfort today. Thank you for my time with Malorie and the rest of my family. Thanks for the capacities that I take for granted, like being able to breathe, see, speak, and the coherence to type this message to my friends and family. Thank you God for Jesus, and Dr. Smyth, and modern technology that is currently in use to save my baby girl's life. Waiting is difficult, but we have hope - and when you have hope you have everything you need.



At 3:15 the anesthesiologist came out to tell us that Mal's tumor was 90% out and that there had been no complications yet. Even more impressive by her measure was the fact that Malorie still had not needed, and likely at this point will not need a blood transfusion. She said that Mal is definitely a fighter, and that everyone is very optomistic in the OR right now. So are we. We are buoyed by the strength of our faith that Mal will be delivered through this peril. At just that moment, Aunt Carol walked in with the official, 2011 Mal-o-Rally shirts. We hope to show them off to our baby girl soon.

At around 5:15 Dr. Smyth finally came out to see us. We all had to sit down to take in the situation. He said that he is confident that he removed 100% of the tumor and did not do any perceptible damage to Mal's nervous system. The tumor was fuzed to the base of her brain in one place, and to her spinal column in another, but he was able to shave off the tumor until there was no detectable trace remaining at 15x magnification. He also said that the in room analysis of the tumor revealed that it is in fact ependymoma. There are four grades of this type of tumor. First is benign, and fourth is malignant. Grades two and three are somewhere in between, but will likely need some treatment (likely radiation) to clear up. Therefore, in his opinion, it would be in our best interest to prepare ourselves for the likelihood that Malorie will need treatment for cancer. The lab results of the biopsy will be in by the end of the week. Until then, I plan on staring at the miracle that is Mal, and being joyous in the work that was done today.

Something to Make Us Smile

I have to admit, it's pretty good for a kid with a brain tumor and a kid with no pants. P.S. I only lent the kids to StL for the World Series. They are Cubs fans again as soon as the next baseball season starts.



video

Sunday

I have heard people say before that they wish their kids could stay a certain age forever. Not me. I have long held dreams of Mal trying on a tutu at her first dance recital, and hosting a living room full of giggling girls at a sleepover. I have walked through how I will tease her the first time I catch her flirting with a boy, and how I will comfort her when she falls for the wrong one. I feel a pit in my stomach imagining her first turn behind the wheel of a car, and a swelling of joy foreseeing me walk her down the aisle.



That is all selfish, I know. Mal has her own dreams, and one day I hope she will get to see them come true. For tonight, my dreams, those of her mother, brother, friends, relatives and so many other kind strangers - they don't matter. Jesus has a plan for Mal. I am at peace with that. I pray that His plan is in line with mine, but again, I am being selfish. More than anything, I pray for the strength to accept the Lord's plan for Mal, whatever that may mean 24 hours from now.


Mal had as adventurous of a day as a kid tethered to a bed by four IVs and one brain drain tube can have. She was allowed by her daytime nurse to sleep on her belly for comfort, and in return she had a bowel movement that shot up her back. For those of you that do know Malorie, when I tell you this you will cringe - it got on Godi and Elmo. There was a two hour period where she had to be without her blankets and stuffed monsters. Thankfully, Jenna again came to our rescue and got the secret replacement Godi (the exact same blanket that she carries around, only sent from her cousin Kaileb who outgrew his) from home while the real ones were being washed.


We have had to give Mal several doses of morphine today, as her head has really been bothering her. She finally, for the first time, told us that her head hurt today. We have been trying for over 7 weeks now to find out what was hurting her. Also, her night nurse, who we have been extremely blessed by for three straight nights (the same ones that let us hold Mal last night) got Malorie a "Big Girl Bed" to sleep in tonight. Mal was excited to get out of the crib, and the bed will allow for Rachel and I to take turns nuzzling up next to her all night. We obviously have to be weary of the lines going into her, but I think we will be mindful.


I got to meet with the Neurosurgeon leading the team performing Mal's surgery today. Dr. Smyth is a great man with a very accomplished record, and I have the utmost faith in his abilities. He told me that he is fairly confident that Mal's tumor is an Ependymoma. These types of tumors are like plastic, and they can shape shift into any loose space in the brain and spinal column. He believes this because of the location and the way it is growing in her. They are sometimes benign and sometimes malignant. He also told me that the top half of the tumor is floating in fluid, so it should be relatively easy to get out. However, the bottom half is up against the base of her brain, precariously positioned against a bed of nerves. This half of the tumor may come out really easily, or it may be attached tightly to the nerves. Mal's long term neurological status largely depends on how tightly nested the tumor is in there. However, because of the rate of ependymomas that are malignant, he will likely err on the side of aggression in removing the tumor, meaning he will forsake long term impairment in order to remove the entire tumor. At the end of the surgery, Mal's skull will be put back together using titanium screws and plates that will remain with her for life. If the tumor is malignant, she likely will not go to radiation therapy for nine more months, as the brain does a significant amount of development between the ages of two and three, and we wouldn't want to stunt that growth. If this is the case she will get frequent MRIs between now and then to ensure the tumor is not returning.


I want to say that I am at peace. I can't. I already wrote it, but it is a lie. I am scared and sad and feel beaten down. But then at times my spirits raise and I know it will be all right. However, there are countless other parents going through tough situations like this. There are numerous families here in the PICU that are fighting for their babies. We can't all win the sick kid lotto and have our dreams come true. I will pray for them to be strong tonight too. If they can be strong, so can Rachel and I.


Mal will be OK.

Sunday, November 13, 2011

Saturday

Today brought more challenges to our family, but also more opportunities to love and be loved. I spent the night with Mal last night, and I can't say I missed the beeps and squeaks of the ICU since I was last in one with the twins when they were newborns. Mal was up from about midnight to one last night and was very playful and happy. She smiled and giggled with me as I tried my best to do slapstick in the dark to get to see those beautiful dimples. They lit up the room.



Throughout the night, and the day for that matter, Mal has to be awakened every two hours for checks on her symptoms. The nurses and doctors shine flashlights in her eyes to ensure she is not starting to show symptoms of a problem, and then check all her connections. Along with the stent in her head, she has an IV out of every arm, and had a catheter as well until she ripped it out today, but more on that momentarily. Her head must remain level with the drainage vial for her spinal fluid, which is hard for a little kid. Mal slipped and slouched and rolled in bed enough that the nurses started coming by her room every 20 minutes or so to readjust her or the vial.


I sent Rach home to sleep last night, but she was back in the hospital by about 6 a.m. She couldn't sleep either. We had a nice morning, watching an incredible number of Dora the Explorer shows. I had no idea Swiper the Fox was so dastardly. Anyway, I went home to have a shower and lunch with Micah around nine thirty. Micah is oblivious to anything being wrong, but asks where Mal is about every ten seconds, which is hard for us. He loves her so much, everywhere he goes he points out her belongings, as if she would be there any minute to claim them. We hope we will be able to bring him in to see her next week when she makes it out of the ICU.


Upon my arrival back to the hospital, Rach called me and told me to get up to Mal's room as quick as I could. Mal's doctors had been trying to keep her on Tylenol for her pain from yesterdays surgery, so as not to mask any neurological symptoms that might present. However, Mal's little body could take the pain no longer, so she started to fight back the only way she could. When I got to the room, Mal was clawing at all her tubes to try to get loose, and desperately trying to stand up. She succeeded in ripping out her catheter, but thank goodness she did not get a hold of her cranial tube. She screamed and fought for a good forty five minutes straight until the morphine kicked in. I have never seen her, or anyone else, in a state of such rage and frustration. Once the medicine kicked in, Mal was much more peaceful the rest of the day.


Around dinner time our friend Jenna arrived with a massive poster board for well wishers to write words of encouragement to Mal. A bit later, my parents arrived from Chicago and were able to see Mal awake and in a good mood. In fact, Mal even ate her third meal of Cocoa Puffs (or as she calls them cock-a-doodle doos) for the day with her grandma. We had no idea she loved Cocoa Puffs so much, but when she gets home I am going to buy her a lifetime supply.







After dinner and a bit of rest, we received the best gift of the day. Our nurse wanted to change Mal's linens and give her a sponge bath. She allowed me to hold Mal while the linens were being changed, and Mal fell asleep in my arms. She is getting so tall now, her legs wrapped around me and hung off the chair. Rachel arrived back from putting Micah to bed just in time to be given a chance to hold Mal as well. She still has not let that baby girl go, as Mal is sleeping in her arms as I type this now. In fact, Rachel is fighting a cold, so she has been wearing a flu mask to prevent germs from getting to Mal. She just asked me to come change hers, as she had fallen asleep with Mal and drooled through her mask. Our nurse called in reinforcements to help her weave through the tangle of tubes and wires to get us to hold our daughter for what will likely be the last time until after the surgery. She is so kind!


Monday is coming all too soon, and looming larger by the moment. Mal's surgery will be complicated, and take most of the day. We are faithful that in the vital hours, Jesus will hold Malorie in the palm of his hand and deliver her safely back to us. The surgeons here are the best around, and we also have faith in them, and their skill. We are overwhelmed by the outpouring of support for our family and our little girl. Thank you to all of you.

Saturday, November 12, 2011

I'm never going to forget the way it sounded coming out of Dr. Brady's mouth this morning. "You need to sit down." Is there a worse thing to hear as a parent when your child is ill? There is, in fact, something worse to hear. I know because they were the next words out of her mouth. "Malorie has a brain tumor."


This day was already as surreal as possible, so I listened to her explain that the tumor is in the base of her brain, and that she was to be taken by ambulance to the Pediatric Intensive Care Unit immediately following her scans while I waited to wake up. No such luck. Rachel and I were rocked. Shell shocked, we took turns calling our parents. Information was streaming in far faster than we could process it, and yet we still desperately needed more. How large is the tumor? Is she in immediate danger? Can we see our daughter? What happens next? Is she in pain? Can we please see our daughter?


Rachel got to ride with Mal in the ambulance while I did my best not to swerve off the road while following in my car. It is not easy to drive when you're crying. When I got to Children's and parked, the woman at admissions looked up Mal in her computer, and then instead of asking for insurance or a payment, she told me to hustle up to the 7th floor. Being under sedation had changed Malorie's body's balance. Her brain started retaining cerebral fluid rapidly and the pressure needed to be relieved. I made it to her room just in time to be whisked away from the door as the team of surgeons bustled briskly near her bed.


The attending physician took me, Rachel and Aunt Chris to a conference room where she detailed the surgery that was needed to save Mal's life. It is called a ventriculostomy, and it's a procedure in which a hole was being drilled through the top of Malorie's head and then a shunt inserted through to a cavity deep in her brain to vent the accumulating fluid. "This procedure is relatively safe," she told me. "Only 4 percent or so of kids do not fully recover." Rachel had to go to Mal's room to sign the consent form for the surgery, as if we had any choice. A nurse stood in the doorway, purposefully blocking her view of the preparations. All she could see was Mal's legs twitching.


The procedure took all of twenty minutes. I think the worry took twenty years off my life. Mal came through it well, but more detailed MRI scans of the tumor were needed. She remained intubated and in an induced sleep while those scans were performed. Rach and I ate dinner. It tasted great but only made the pain in my stomach worse.


Mal returned to the PICU and the doctors told us they wanted to try to let her wake up. If she did ok, she could come off the breathing tube and remain awake. If she freaked out, they would put her back under. In true Mal fashion, her first word when the tube was removed was, "Elmo."


Mal is sleeping now, but I'm not sure I will sleep until Monday. That is when the doctors will attempt to remove her tumor. They will spend tomorrow looking at her scans and then charting the best course to the tumor. The surgery will likely last several hours, and that's if it goes well. The tumor is in the fourth ventricle of Mal's brain stem, which is the most common location for a children's brain tumor. I'm told the number are in our favor for a successful surgery, but I'm not sure what that means. I hope 99.99 percent of kids recover from this with no long term effects, but I have my doubts. The safe procedure she got today had a 4 percent chance of bad news. Following her surgery, the doctors will analyze the tumor for cancer. There is a chance that its benign, but we won't know until a few days later.

Once the initial shock wore off, we settled in as best we could. We are not strong, but are relying on the steadfast strength of Christ to bolster our efforts. Our family is tremendously blessed with a support network that is out of this world. A special thanks to Jenna, Judy, Bob and Chris for taking such good care of Micah today. Also thanks to Brian, Liz, Phil, Jessica, Aunt Carol, my parents and siblings and so many others for rallying to our side in a time of need. Today was the worst day of my life, and each of you made me smile, so thank you and God bless you for that. I will try my best to write more this weekend and keep everyone updated on Mal's condition. It's been a rough day, but I pray that we are now on the road to recovery.




When it rains, it pours.

But my heart soars,

Because it can't rain all the time.