Sunday, November 11, 2012

One Year Ago Today

“You never talk about Mal-o-Rally anymore,” Rachel said to me a couple of weeks ago.  It was more a diagnosis than an accusation, and it certainly was not something I could deny.  One of the things I’ve learned about myself over the course of Mal’s recovery is how I deal with my pain – I bottle it up. While I am certainly able to spout off cheery updates to the inquisitive friends and relatives who wonder how she is doing lately, I offer nothing beyond the basics.  “Terrific,” “You’d never know she was sick,“ and “we’re optimistic for the future” have become my go-to phrases.  Typically I am not pressed for more, so I don’t ever dive into the emotions of the family.  I have been able to wall off conversations regarding fear, death, love or parenting, instead parsing them down into ten word blurbs of positivity.  I have also become an expert at giving the thirty second synopsis of Mal’s cancer diagnosis, treatment and remission for those unfamiliar with the story.  I can cruise through it without flinching, offering little more than the facts of the case and a bright outlook on our future.

 The fact that I have simplified and detached myself from Mal’s brain cancer has never been more clear than in the past few days.  Today is the one year anniversary of her diagnosis.  One year out from what remains the worst day of my life.  During my talk with Rachel regarding my reluctance to reminisce about our ordeal, she caught me a bit off guard.  “I think you have forgotten the work you put into the blog, and how good it was for you,” she told me.  I confess that my entries were a creative form of therapy for me.  Rachel went on to tell me that she wanted to turn the blog posts into a book for Malorie, so that when she is older she will be able to more clearly understand what she (and we) had been through.

 I agreed to log on to the site to enter one last post regarding the past several months since Mal completed radiation, but I was fairly unprepared for what I would be doing.  The night that I logged on to read my previous posts was the first time I had been back on the site since the last post was written in April.  I had not even checked the comments to that post.  It was almost as if once Mal finished radiation and we had tidied up the business regarding the charity benefit, I turned my back on the situation.  Of course, that was not the case for me.  I never turned my back on it, but I certainly did hide it down in the depths of my being.  That night I poured through the posts I had written, and I was placed back in a nightmare.  I remembered the sleepless nights, the worry, the small pieces of hope that made us smile.  It took me seven more days just to begin writing this post, as I was unsure if I’d have the heart to do it.

The simple fact is that our family is now, without a doubt, back to normal.  For ninety-five percent of the time I am able to pretend that there was never anything wrong with Malorie, and I love that.  She has gained back all the weight she lost and more, her energy is through the roof, and just as the doctors had promised, she has not lost any bit of her mental or physical capacities due to the brain cancer.  The last few months have been an extended series of achievements for her: first day of pre-school, second time to the beach, third birthday, potty training, her first bike wreck, a family apple-picking trip.  Her hair is all growing back and it is full of luscious brown curls when she wakes up in the morning.  Mal finds the beauty in any situation, and makes a beautiful situation feel like it will overwhelm you.  Last month she found a leaf on the ground that had five colors; green, yellow, orange, red and purple.  I am not sure her feet hit the ground the rest of the day as she recounted the leaf to everyone she saw, including our dog.  Not once during these past months did I find myself absorbed over the fact that the cancer likely would have robbed her of these opportunities, but I find the thought rolling through my head now.

Maybe that is why I subconsciously forced myself away from the blog.  It, for me, has come to represent something I wanted to distance myself from; Malorie’s sickness.  I still find myself celebrating every day for the gift that it is, but I do so from the frame of reference of a man thankful for life rather than a man who nearly lost his child.  There is no rule saying that these two references can’t coexist, but for me they don’t. 

Micah has continued to match Malorie’s achievements in lock-step.  His capacity to learn and remember still amazes Rachel and me.  The other day he reminded us that on the one occasion he was able to visit Mal at the hospital, she had a nurse named Rachel and said nurse was wearing green scrubs.  He is a work of art full of frenetic energy and minute details – constantly changing and learning.  I am scared that I will wake up one day and have missed the last of his childhood discoveries, as he runs through them so fast.    

Rachel and I have done well too this past year.  I got back into shape, began flying for the Navy Reserve again, and have resumed full duties at my civilian job.  Rachel continues to amaze as a parent and a wife, persistently challenging the family to learn more, to do more, and to be more.  All this lies at the crux of my difficulties in writing this entry – I simply don’t want to look back on a difficult time when I know there are so many other wonderful things happening out there. 

The first time I ended this blog, which was originally intended to mark the kids’ birth and first year of life, I wrote something silly along the lines of “and they all lived happily ever after.”  Then my daughter got cancer.  The bad news is there is no happily ever after out there.  But the good news is that there is so much wonder, so much love, so much goodness and so many experiences out there, that I wouldn’t want to be written off so easily.  Many a person has said that it takes the night to make you appreciate the day more wholly, that it takes rain to make you revel in the sun.  Our faith allowed us to take the shared experience as a family fighting a terminal disease, and turn it into a perspective from which we more fully enjoy the days we do have together.  For that, I am forever thankful. 

Thank you again to all the wonderful people who tolerate my less-than polished writing and unspecified delays to read this blog.  Your care and love for our family truly did carry us through some dark, dark times.  And to all the other loved ones who simply care for and love our family, thank you to them as well.  All of you have helped us find our way in this life.  My sincere hope is that your prayers and love will continue to shine on us for decades and decades of healthy scans to come for Mal.  Thank you for your support, and thanks for reading.

Last night, Malorie told Rachel, “Mom, I didn’t like having a brain tumor.”  And for all the words I’ve written, I’m not sure I could have said it any better.  Happy One Year Out Day!

Thursday, April 5, 2012

Mal's First Scan

I don't suffer often from insomnia. In fact, most days I can fall asleep sitting up, and have been known to sleep through several midnight disturbances and movie endings. But the night before Malorie's first scan to see if her body was clear of cancer, I laid awake for over four hours. I started in the bedroom, and tossed and turned enough to annoy Rachel (not to mention myself). I moved to the living room couch after I started coughing for no apparent reason. As I lay on the couch, my anxiety turned to panic, wondering what the results of the MRI would be. The panic turned to anger as I beat myself up for losing sleep over something I could not control. I counted sheep, I got myself a drink, I prayed, I talked to myself, and I worked on calming breathing techniques. Basically, I did everything but sleep. The last time I remember seeing on the clock was 3:20 a.m, and then eventually the exhaustion overwhelmed my worry and I passed out. Three hours later I was awake and pacing the floor, waiting for the time to wake Mal to take her to the hospital, where we learned that we would not get the results of her scan until 24 hours later.

As most of you already know, Mal's scans turned up as good as they possibly could have. There were no signs of new tumors on her brain or spine, and all of her blood cultures indicated there were no pending issues. Rachel and I had hoped for nothing less, as the last 6 weeks have brought our family back to a normal way of life. We have had no hospitals, no PICC lines, no blood draws, and no sickness for quite a while - but the worry of the pending scan hung like a storm cloud on the horizon. So, Thursday night was a good one in the Klug home, as the forecast showed that the first storm had finally passed.

Saturday night was our first opportunity to celebrate the good news with friends and family at the Mal-o-Rally Silent Auction and Trivia Night event we threw to raise money for charity. The night was filled with great times and crazy stories, but more than that it was our chance to say "thanks" to everyone for their support over the past months. Rachel and I worked hard to ensure everyone had a good time, and one of the ways we did that was by creating a movie to announce the positive results of Mal's scan. It was our way to introduce the Klug family to anyone in attendance who did not know our story, and also a means to let the crowd know en mass that Mal was officially cancer free. At the event, the movie was in high definition and on the big screen, but I have reduced the resolution and uploaded to You Tube for anyone who could not make the trivia night or wanted to see it again. Here is the link if you would like to watch. At home, you must create your own roar of applause when the results of Mal's scans appear on the screen. (as a note, the ten second pause at the beginning is on purpose... please be patient)

The night was a terrific success as far as the fund raising went as well, with us raising over $15,000 for Friends of Kids with Cancer. My employer has a fund matching program that goes up to $6,000, so we expect to give roughly $21,000 to the charity as a result of the night. Of course, the night would not have been possible without the hard work and time that was dedicated to the event by Jenna, Karl, Jess, Jeff, Chris, Rob, Bob, Judy, Pastor & Mrs. Z, Elliott and several others who helped us pull it all off. Our gratitude is beyond measure and everlasting.

Mal's next scan will be in three months, which to us seems like a very long time. And I am sure that eventually the storm clouds of a pending scan will appear on the horizon, too far to worry at first but growing more and more menacing by the day. My hopes are that each passing scan will bring us more and more assurance that Mal has beaten cancer. That, or at least that with each passing scan I learn to be better about falling asleep. Either way, tonight I know I will sleep well, and for now, that is plenty good for me.

Sunday, February 26, 2012

Open Letter to Readers

Dear Friends,

It would be easy to look at the last four months of our life as the worst we've ever experienced. I mean, for heaven's sake, our kid was diagnosed with brain cancer! Throw in a flat tire, the terrible twos, a dog with a busted leg, financial uncertainty, long days at the hospital, and a best friend in a coma, and it's got to be right up there.

But for all the challenges, the ups and downs and sleepless nights, stress and angst and worry; we stayed resolute in our faith that Jesus would see our family through in tact. And now, clearly on the other side of radiation, Rachel and I can start to survey our surroundings. Honestly, we're not doing so bad.

Malorie was a champ on what we now officially call "Bell Ringin' Day." She woke up 40 minutes early from her normal anesthesia nap because she felt them removing the bandage from where her PICC Line had been for the past 40 some-odd days. At first, she was in no mood for ringing a bell, much less anything else. But then she remembered she had gotten a new bike (from Friends of Kids With Cancer, more on them later). And then we let Micah come have breakfast with her in the recovery room. And soon, she was ready to ring the bell.

As much as I hope and wish and pray that the bell meant a victorious end to her fight with cancer, we probably will never know that for sure. For now, Mal's blood counts on Bell Ringin' Day were good enough that she gets four long weeks of no doctors appointments, and that is a victory enough. The first night she was home without the PICC Line, she cried when we didn't put a big bandage over her upper right arm before bath. She cried even harder when we got it wet. But on her third bath post-PICC removal, she finally got the idea. "Daddy, can I swim?" she asked. When I told her yes, she laid down very carefully, but eventually dipped her right arm into the water. Every bath since then she has sprawled out on her stomach and just laid there, playing. All the doctors told us that the toxicity from the radiation would really be kicking her butt this week, as it would be reaching its peak. For once, the doctors were wrong... that girl has shown no ill effects at all in the past nine days. We have been thankful all week for no complaining of a sore throat, no sickness, no extreme fatigue, no nothing! The worst Mal has had is a rash she can't beat on her own, so she has a cream to help boost her immune system to shake it.

We've been told by many families about scan anxiety: the worry over the next cancer check to come. Mal's is in about three weeks. But for now I am content to just look at Mal and know in my heart and soul that she is fine. She just looks so good, so healthy and strong that she can't be sick.

I know the anxiety will catch up with us eventually, but for now we have some very welcome distractions in the Klug house. Micah is basically potty training himself at this point. Rachel and I keep putting it off, and he has just persevered. I don't think he has leaked anything into his diaper for about 36 hours (including overnight). Rachel has her hands full with the kids back in full force, and now with a three legged dog. OK, so Tyson didn't lose a leg, but he did have to have a major surgery to repair a damaged knee. We were presented with the option of expensive surgery or putting him down, and chose the surgery. We (mostly me) could not part with a member of the family right now. And so Tyson has six weeks of limited movements, days locked in a kennel to keep him from running with the kids, and nights locked in a snuggle with Rachel on the couch. And I am back full time at work and also trying to get back in shape for the spring.

The other big distraction these days is our benefit to celebrate Malorie and her strength and courage through her battle with cancer. For those not in the know, on March 31st we are holding a Trivia Night and Silent Auction in honor of Mal for Friends of Kids With Cancer. They are the charity that gave Mal a toy every day of her cancer treatments. They also hold fashion shows with models that are cancer survivors, organize social events for children battling cancer, and are generally a great cause. Since we have been blessed with such wonderful friends and family and faith, Rachel and I wanted a way to show we were thankful. The best way we could think was to have a great night with those friends and family and raise some money for a deserving cause. Everyone who has followed Mal's story is welcome to attend. And for our out-of-state friends or those with previous arrangements, you are welcome to donate to the cause. Anyone wanting more information is free to email us at So far we have some awesome items for the silent auction (like an autographed Jimmy Buffett surfboard, baseball tickets, gift cards and baskets galore) and have taken reservations for 31 tables of ten.

So, for now, we will continue to be thankful and hopefully return to our quaint suburban existence. Movie nights and potty training again filling the conversations instead of medical terms and fears over Mal's future. I will do my best to keep everyone posted on Mal's progress, but I do imagine things will slow down here for a while, so I hope my posts become less frequent. Again, we are so grateful for all the kind thoughts, prayers, word and works that you have all given us. It's a pretty awesome feeling to know you are as loved as we are, and so thanks. Hope to talk to you soon with some good news of Mal's first scan.



Wednesday, February 15, 2012

Tomorrow is the End and The Beginning

UPDATE: After talking with the doctors on Monday, we learned that the change to Malorie's treatment occurred back on January 4th, and was made by Dr. Mansur. He left no notes about why he made the change when he left for Cleveland, so we requested that our new doctor call Mansur to confirm he intended to make the change, and to get the reason for the change. On Tuesday Dr. Mansur reported that the change was intentional, and that 33 treatments is required for the clinical trial that we were considering. Once we declined the clinical trial, he reduced the dose because there is not a direct link between those last three treatments and a reduced recurrence rate.

And so, tomorrow is Mal's last radiation treatment. She is bringing a veritable posse of family to see her ring the bell to signify the end of her radiation, including Micah, my mom, Rachel's parents and sister Chris. We are all very glad to see the end of the difficult radiation routine and the beginning of what we hope is a long (permanent would be nice) remission for Mal. Time to celebrate Mal's accomplishment and courage, and pray for everything to be downhill from here.

Sunday, February 12, 2012

And Then There Were Seven...Or Four.

I'm upset because my graph is ruined. You know, the one with X's and dashes to signify Malorie's progress through radiation? Yeah, that one - ruined. OK, fine, I didn't even remember to put it at the end of the last post. But I'm upset nonetheless.

Yesterday, a nurse attendant called Rachel to discuss the upcoming end of Mal's radiation treatment. She told Rachel that one of the other nurses had heard us talking in the recovery room about how Mal's treatment ended on February 21st, and so she was calling to correct us. According to her, Mal would be done February 16th. Rachel told her she was wrong, and went to get the treatment plan that Dr. Mansur gave us on the day of Mal's simulation. On it, in black and white, it shows the 33 treatments, three of which occur after the 16th. The nurse told Rachel that the treatment plan had changed, and insisted that Mal would be done this coming Thursday. The lady said that sometimes the doctors add a few "fluff" days to the plan. Rachel told her "Bologna" or other slightly less nice words that that effect, and then told the poor nurse attendant to go get a doctor and call us back.

It's not that we are patently against Mal's treatment only consisting of 30 treatments. In fact, the fewer treatments she gets, the less chances of long term complications from the radiation - and those can be pretty nasty. But the problem is that we were sold on being aggressive by Dr. Mansur when he was developing her treatment plan. He told Rachel and me that because Mal's cancer was a grade three, he was going to take off the kids gloves and go after it; 33 treatments, the max allowed. We gave him a paper with our signature for consent to his plan; he gave us a paper with a schedule for her thirty-three appointments.

But then something changed. Dr. Mansur created Malorie's treatment schedule, and even programmed it into the radiation machines that send the waves through her head each weekday morning. Then he moved to Cleveland. Dr. Mansur accepted a post at a children's hospital in Cleveland and left St. Louis during Mal's second week in treatment. He assured us that we would be in great hands with his interim replacement, Dr. Maholski, and that his plan would be carried out despite the change in doctors.

When the nurse attendant called back, I fielded the phone call. She told me that she had confirmed Mal would be done on Thursday. I asked her who had made the decision to change Mal's treatment, and she told me it was never intended to be 33 treatments. I called her out on that, and told her that I had the paper from Dr. Mansur in my hands and planned on bringing it to her on Monday. She then tapped furiously on a keyboard I heard in the background of the call, and told me that Dr. Mansur changed it before he left, as the prescription he entered only consisted of 30 treatments. I asked her if she could print me something with Dr. Mansur's signature and a date that showed only 30, and she gave me a solid "maybe." I tried not to shoot the messenger, but I did unload on her with some pretty heavy terms like fiduciary duty, communication breakdown, and extremely upset. Seriously, Mal has a team of 8 doctors caring for her - not one of them thought it important enough to call us to let us know they decided to change her treatment plan?

Rachel and I have an appointment with Dr. Maholski on Monday, and so we will be digging into this issue more then. I have some serious questions for him. I'm not sure if any of that will change her new plan, or if I even want it to. But I am going to unload on that man in T-minus 32 hours. Until then, we will ride out the weekend with all the joy and thanksgiving we can muster. We have faith that Mal will be fine whether she gets the three additional treatments or not. She has been terrific through all of this, and we are certain she will continue to do so. But, none of that helps me with what to do with my graph. And so, I'm upset.


Sunday, February 5, 2012

Mal's Palindromes

21:12. Simple enough. Twenty-one radiation treatments now complete by Malorie, and twelve left to go. Mal is holding up extremely well, showing only small signs of anything being wrong with her. Mostly she is fatigued, and we see that in a number of ways. She sleeps more now than we have ever seen her sleep before, and even when she is awake, she becomes tired faster than Micah does. She has developed a tendency to melt down and have more fits than she used to; although that could likely be attributed equally to fatigue and the terrible twos. Malorie’s blood counts this week were lower again, and starting to teeter just above the “critical” level, although to us she seems to be much better than her blood counts indicate. The nurses continue to reassure us that she is “relatively” high in her important numbers. And for what it’s worth, when she is awake and well rested, no one without knowledge of the situation would have any idea she was in less than optimal health. Even the hair falling out has slowed down, and the hair she has remaining on top does a pretty good job of concealing the fact that she is bald around the circumference of her head below the ears. Also, last week she showed her first signs of the radiation affecting her mouth and throat, complaining that a strawberry was “too hot.” The doctor attributed it to the acid in the strawberry bothering her tender throat, and told us to give her some Tylenol if it happened again, which it has not. We try to make it easy on her. No melon, no lemon. Nonetheless, her appetite has degraded, and she has lost one pound since radiation began. Mal’s voice also gets strained and a bit horse when she first wakes up, and it happens more often and for longer durations towards the end of the five-day long stretch of radiation on the weekdays. But, all things considered, we are terrifically grateful with her progress thus far.

Micah, for his part, is doing very well. He is starting to come down with a cold, which worries us because he might pass it along to Malorie. Otherwise, he is developing into the most charming chatterbox of a boy I have ever met. Holding a conversation with him is like trying to chase down a racecar. He makes me laugh on a daily basis, including this nugget from last week:

I had just pushed the twins around in a laundry basket for about 20 minutes and then announced that it was bath-time. Micah was up second for the bath, and so while Mal was being bathed, I was undressing Micah, helping him use the potty, and generally discussing life with him. As I was doing this, I was sweating because pushing 65 pounds worth of kids in a laundry basket on carpet is hard work, so I took off my shirt.

Micah (pushing my nipples): Are these your belly buttons Dad?
Me: Nope.
Micah (pushing my nipples again): What are these Daddy?
Me: (silence)
Rachel (from the side of the bathtub where she was bathing Mal): Those are your daddy’s nipples buddy.
Micah: Are these your nippos daddy?
Me: Yeah bud, those are my nipples.
Micah (still fiddling with my chest): Your nippos are kinda squishy, daddy.
Me: Thanks a lot man.
Micah (now focusing his attention on the rest of my torso): You are kinda squishy, daddy.
Me: OK, that’s it. I’m putting my shirt back on.

And so that’s how it’s been going here lately: equal parts heart-wrench and hilarity. All the ups and downs leave us just exhausted enough to be slap happy… and forgetful. Was it a car or a cat I saw? Anyway, if there’s one thing I learned this week, it’s that once I’m done trying to sneak palindromes into a blog and Mal’s done with radiation, I’m going to have to start working out again.

Thursday, February 2, 2012

Given Much

While driving home from work today, I was listening to NPR. It's pretty much the only news I get these days, as I find myself too busy to watch the news despite the fact that it is on 24 hours a day. Anyway, I heard President Obama cite a Bible verse that had been on my mind in recent weeks, Luke 12:48. It says, "From everyone who has been given much, much will be demanded." He was using it in reference to the US tax code, which is not the context in which I have been thinking of it, but nonetheless applicable I suppose. I have been thinking of it in the context of the blessings we get on an everyday basis. Malorie having cancer stinks, but it has given me a new view of the world and those around us. Our family has been blessed with tremendous friends and family, hope and faith, love and support, courage and strength, joy and spirit. We have been given much. Rachel and I feel the need to give as well.

One of the daily rituals for Mal at radiation occurs when she first enters the Radiation Center. She takes a hard left turn and sprints perpendicular to the receptionists desk and straight for Elizabeth's Corner. Elizabeth's Corner is the children's area of the waiting room. It is walled off from the rest of the waiting area where adult cancer patients and their loved ones await treatment. Safe from the sights that could confound a child her age, Mal makes Elizabeth's Corner her home for the 15 minutes or so per day that she spends waiting to be called back for treatment. As fate would have it, Elizabeth's Corner is named for a child who was diagnosed with an ependymoma at age 5. Her tumor was removed several years ago, and according to the plaque in the room that bears her name, she is still in remission. Yet another one of the daily blessings we receive is the hope that reading about Elizabeth brings.

Four weeks ago when we started treatments, Elizabeth's Corner, for all it's cozy comfort, was bare. It had one small animal play set, a bucket of crayons, some books and three puzzles. These items were dispersed hap-hazardly amongst the 14 shelves in the room, and simply made the space look run down. The first time Rachel watched Mal and a little girl who was waiting while her Dad got radiation fight over the animal toys, she knew she wanted to make the space better.

After some furious grass-roots fundraising that included Rachel going door-to-door at some local businesses, we raised a little over $150 for toys in Elizabeth's Corner. Then, last Monday, Rachel and I began stocking the room with the toys and books we were able to get: Action figures and Hot Wheels for the boys, Princesses and a Tea Set for the girls. We brought in new chairs made for toddlers, brand new crayons, books and games. Thanks to the generosity of those in the local community, we were able to spruce up Elizabeth's Corner to try and make it a bit more inviting to those who find themselves there.

Although our efforts in Elizabeth's Corner were small (and for good reason, the staff at the hospital told us to stop bringing in toys because they were responsible for keeping the area clean once we left), it gave us a great feeling. Like any gift, hope and love is great to receive and even better to give. For that reason, we have shifted our efforts to supporting a children's cancer charity by hosting a benefit event on Mal's behalf. We have set the date of March 31st for our event, which will be a trivia night and silent auction that we hope will be a celebration of Mal's completion of radiation. All the proceeds from the night will go to a charity that Rachel and I handpicked because of the great work they have done with Mal and the other kids going through treatment with us at Siteman Cancer Center. The charity is called Friends of Kids With Cancer, and we are hoping that we leave them speechless feeling just as loved as we have felt over the past few months. Our family has been given much... the book of Luke tell us what comes next.

For those interested in contributing to Mal's benefit either by attendance or other means, more information will be posted in the coming weeks.

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PS - Rachel, I couldn't be more proud of you for what you've done with Elizabeth's Corner. To Jenna, Jess, Chris, Karl, Brian and all the others helping with Mal's Benefit, thank you from the bottom of my heart for your assistance in making our dream come to fruition.

Friday, January 27, 2012

It's No Big Deal

It's only hair. It's just hair. It's no big deal. Vanilla Ice used to have swooshes and slashes and shapes shaved into his head. Now he looks like a normal guy. It's no big deal. Madonna was a blonde, then a brunette, then a redhead, then black haired, and then I lost track. I think Gwen Stefani had green hair. Who cares? Even I'm guilty. In high school I had frosted tips, a super-cool hair-style in the 90's where you dye the ends of your hair blonde and then spike it. Looked good at the time. Looks silly now. It's only hair. It's just hair. So why did it make us feel so bad?

This morning started like all the other days did this week, with Mal charging full speed into the radiation treatment center. The receptionist smiled. The elderly couple in the corner waved. Mal didn't notice. She changed course and veered to the kids area of the waiting room. When we were called to the patient area for the nurse to get her vitals, Mal sat on Rachel's lap. And then it happened. Rachel noticed a group of hair that had fallen out into the hood of Mal's sweatshirt. As a bystander to the vital signs routine, I saw it all go down. Rachel's eyes widened, then they started to well with tears as she looked up to me. I gave Rachel a stern look, like a teacher scolding a misguided pupil, and bobbed my head towards the nurse. Rach locked the tears up and focused on the nurse. Mal didn't notice.

Once Mal was anesthetized for the day, Rachel and I shared a hug and then walked back into the waiting room to wait for Mal to finish her treatment. As we broke the threshold of the doors, Rachel was unable to keep her composure. Out in the waiting room, a wonderful man named Greg, who is getting treatment for a sarcoma on his leg, and a woman named Michelle, whose husband is being treated for brain cancer, saw Rachel come through the doors ahead of me and knew something was wrong. They did a great job of sharing a prayer and words of comfort with Rachel and me about Mal's hair loss. "It's only hair," they said. "It's just hair. It's no big deal."

Mal left a good portion of her hair on the hospital stretcher upon which she wakes up from her treatments. Her hair continued to fall out on her bed during nap, and into her hoodie throughout the day. By bath time, her hair had thinned in back to about a third of what is was 24 hours ago. When Rachel brushed it after bath time, more fell out. Mal didn't notice. It's only hair. It's just hair. It's no big deal.

Except that it is a big deal. For the past three-plus weeks, outside of the few hours per day that we spend at the hospital (and the occasional PICC Line scare) Mal has seemed like a normal girl. She maintained her energy, kept up her joy for life, and faced cancer with a smile on her face even when we could not. It was a great illusion. Even when we knew in our mind that Mal was fighting brain cancer, we could allow ourselves a few moments each day to pretend that she was fine. She looked fine. She acted fine. But now, the bruises are settling in under her eyes, and her hair is falling out by the handful. Our illusion is gone. Our baby girl is a cancer patient in our hearts, minds and eyes.

No matter how much you prepare yourself for something like your kids hair falling out, it doesn't work. The sheer shock and sadness is overwhelming. Both Rachel and I spent today in various states of grief, mourning the loss of Mal's hard-earned auburn locks. We swept it up behind her. We washed it down the drain. We debated what to do with the remaining hair. Mal didn't notice.

But I kept coming back to what our friends said in the wiating room. It's only hair. It's just hair. The fact that it fell out means the radiation treatment is working and we are killing the fast-growing cells and eliminating any left over ependymoma. Her hair will grow back. Our hearts will mend. Mal will get better, and bigger, and forget about being bald again. And one day Rachel will do Mal's hair for the Homecoming dance. And some night I will run my hands through her hair while we snuggle and watch a movie. That day is coming soon, and on those days I will not remember the way I feel tonight. Hair grows back just like we change our moods; only hair takes a little bit longer. It's only hair. It's just hair. It's no big deal.

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Saturday, January 21, 2012

The PICC That Wouldn't Stay

Once upon a time there was a little PICC Line. It had no name. The PICC Line was born on January 5th, 2012 in a land called MaloriesArm (which had two capital letters in its name for no good reason). That pesky little PICC Line just could not sit still. In fact, every time there was not something holding it down, it tried to leave MaloriesArm and see the light of day. So, when the kind nurses from Children's Hospital tried to change the bandage covering the PICC Line on Thursday, it decided to venture out on its own. As soon as the bandage was off, so was the PICC, racing from MaloriesArm in search of adventure and fresh air. The nurses were not amused, and neither were we. Thus, the little PICC Line without a name was replaced today by surgical procedure. See you later, little PICC Line. The new one is stitched into place to ensure it will not try any shenanigans... and they all lived happily ever after.

OK, I am accustomed to ad-libbing bedtime stories to "cut them short" as Rachel puts it, and help the twins get to bed on time when they pick a longer book to read at bedtime. The story covers the gist of the last few days, as Mal had to have her PICC replaced today because the first one seemed intent on getting out of her arm. Yesterday, during Mal's weekly bandage change and site cleaning, the PICC Line just started to progress out of her arm as soon as the tape holding it down was removed. This was the second week in a row that it migrated. Once the IV line had made it out of the vein, it could not just be shoved back in for risk of infection, so we had no choice but to have it replaced today. So, immediately following Mal's 11th radiation treatment this morning, she was taken over to the same-day surgery center and the IV line was replaced. This would not have been so bad if it didn't entail a second anesthesia within three hours.

Rachel and I were very worried about Mal not being able to follow routine and eat after she awoke from her radiation treatment, but she was great. She snuggled with me, played paper dolls with Rach, and watched Sesame Street in the two hours between her waking up from radiation and her second procedure. She could not eat or drink because she had to be put under again, but she didn't protest much, and seemingly understood every time we told her that she had to wait.

So, two weeks down and four-and-a-half to go. 33.33% of radiation complete. The fatigue is definitely setting in for Mal (and me too), but we have the wonderful respite of a weekend to aid us in getting ready for next week. Five days a week at the hospital, today for almost 8 hours, can tire out even the toughest of kids and parents. Top that with the fact that Mal's blood counts are dipping, meaning that her immune system is lower than it should be, and we could really use some rest. Although the nurse who gave us the blood test results did a great job of assuring us that her counts are in the "normal" range for a cancer patient, it is still alarming to see a test result that has "LOW" in all capital letters alongside every meaningful result. But, as you can read above, the story of The PICC Line That Wouldn't Stay has a happy ending... I mean, it says right there that "they all lived happily ever after." We have seen no major complications from treatment yet, and have faith in Jesus that all will be well for us for the next 22 treatments.

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Thursday, January 19, 2012

Dynamic Routine

Routines are nice. They help you to plan your day by knowing what to expect to happen at any given time. But, when you get too stuck in a routine, you find yourself in a rut, challenged to break the inertia of a routine that has become a habit. On the other hand, people who say they like to have every day be completely different from the last are liars. No one wants everyday to be completely different – because if you ever found something that you loved to do, you would have to dismiss it and just move along the next day. So, we all find some niche somewhere between being a slave to a routine and complete unpredictability in our lives. Therefore, it is not surprising that the past week has brought some new structure to our lives, but at the same time a level of volatility that certainly is keeping life interesting.

All of the doctors and nurses told us that eventually we would find our rhythm in regards to getting Mal to radiation in the mornings, and they we right. Our new routine may not be comfortable, but it will work for the next month and a week. Rachel wakes up just after five to get through the shower, with me waking up about 20 minutes later to get through the wash. We wake Mal to leave for treatment at around 6:15 and are out the door by 6:30 on days where Micah stays home with a sitter. On the days where Micah has to go to another person’s house for care, we back up the schedule by 15 minutes. Mal gets to watch a movie on the way to the hospital, and very rarely makes a peep during the ride. Once we arrive at the Siteman Cancer Center, we go to the small children’s waiting area to await our nurse. Mal gets her vitals taken, and then is anesthetized for treatment by about 7:30. Typically Mal wakes up about 30-40 minutes later, and we turn the radiation recovery room into our breakfast nook for 20 or so minutes after that. Mal Pal’s breakfasts now consist of Pop-Tarts and flavored applesauce, with the occasional Cheetos or Chex Mix thrown in to keep her from throwing a fit while recovering from the anesthesia. Another movie on the ride home (I now have the entire Princess Stories DVD memorized) and most days we’re back to the house by 10.

As I said, there are the occasional curveballs that make each day a little different. Yesterday, Mal did not want to get up in the morning, and actually threw a fit as I got her dressed, crying “I want to sleep, Daddy. I want to sleep.” We are starting to notice a gradual slip into the decreased energy that the doctors told us would come for Malorie. Tonight, for instance, Micah and Rachel wrestled and read books for 20 minutes in the family room. Usually Malorie would be all over that event, but instead she got out her sleeping bag, asked me to go get her “friends” (toddler code word for the four Elmo’s, the Cookie Monster, assorted beanie babies and other hangers-on and cronies that compromise Mal’s night-time entourage) and then sing her songs. I spent that 20 minutes on the floor trying not to sound too much like Peter Brady while cranking out hits such as "ABC's" and "Holly Jolly Christmas.". One day Mal decided not to take a nap and then was in a terrible mood all night. Micah also helps to break the routine with his daily antics and general silliness. He has been a real trouper through all the shuffling between baby-sitters and shifting routines.

Only one day last week was our loosely defined routine majorly disturbed, and that was Thursday. Thursdays are the dedicated day for changing the dressing on Mal’s PICC line, and when that was being done, the nurses realized that 7 cm of IV tube was dangling from Malorie’s arm. This was a bad thing, since only 4 cm were left exposed following her surgery. So, somehow, 3 cm worth of IV tubing got dislodged and pulled out from inside her body. Immediately following her radiation treatment, Mal had to go get an X-ray taken to ensure the IV line was still all the way into her central artery in her chest. If it was no longer in there, she would need to be put-under again to undergo a procedure to replace the PICC line. When she woke up from anesthesia that day, she was still not allowed to eat in case she needed to be anesthetized for another surgery. Mal was whisked away from the recovery room/breakfast nook and taken up to radiology and was not a fan of this break in routine. Luckily, the x-ray showed that her PICC line was still in her artery, although not as deep as it once had been. However, the nurses also discovered at this time that Mal’s PICC was not drawing blood back (although it still could administer medicine). Mal was then taken from radiology to the hematology/oncology clinic, where the nurses studied her PICC and contemplated giving her a de-clotting medicine to clear any potential blood clots on the end of the tube. Just the mention of a blood clot so near to my daughter’s heart sent me into a tizzy, and I began studying the faces of the team of nurses attending to Mal to try to gauge the danger she was in. However, somehow through their prodding, Mal’s IV line began drawing blood again, and the de-clotter was not needed. The common theory as to why the IV just started working without intervention was that it had been stuck against the wall of her artery, and then just adjusted. I don’t pretend to be an IV expert, so I bought the explanation, but certainly don’t want to go through that experience again.

The only other big break from routine was Saturday morning, when the twins transformed for the first time into Super Micah and Super Mal. If you have not yet read our friend Nicole’s account of procuring the new outfits for the twins, stop reading my blather right now and go to this link: and then come back. The pictures will mean a lot more to you if you read her heartfelt and well written blog entry (and watched the video). Thanks, Nic.

Finally, as I prepare to post this blog and then return to my ever-changing daily routine, I wanted to figure out a way to make a graph or something to show how far into treatment we have made it (27.27%, but who’s counting?) but was too lazy to learn the coding to do so on this blog, so here is the laziest graph ever. When you see 33 X’s and 0 –‘s, you will know we are done.
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Wednesday, January 11, 2012

At Least We're Breathing

Yesterday we got to see a beautiful little five-year-old girl named Maddie ring the bell to signal the completion of her radiation treatments. While Maddie and Mal were getting their radiation treatments simultaneously, we exchanged cancer stories with her parents. Maddie has a different cancer than Mal; one that is more aggressive and had spread to more of her body. It left her brain and invaded her sinuses. She's already been through surgeries as well as six-plus weeks of chemotherapy and radiation. We congratulated her parents on the completion of radiation, and they thanked us before stunning us by telling us that Maddie now has 37 more weeks of chemotherapy. Nine more months of pain. "At least she is still at home," Maddie's parents told us. "She sleeps a lot, but she can still be with her family."

Mal is now four treatments into her radiation, which will be 33 treatments in all. I guess I missed my chance to officially say that "we are the 9.09%," when three treatments were complete. All hokey Occupy Fractions jokes aside, Mal has held up fairly well so far. She has been a bit shaky waking up from her anesthesia naps after her treatments, but bounces back very well throughout the day. By noon she has been essentially normal, although for the last two days she did take extended naps. We have just started to notice fatigue outside of nap time, and she is still a week or so out from any expected hair loss. The scar where the tumor was removed has begun changing color from a dark purple to red, and we are not sure that is normal, but the doctors did warn us that there would likely be some skin burns near the site of the radiation treatment. Probably the worst part of the week for Mal has been a cough she has developed. She is getting a cold, and the frequent anesthesia and radiation are exacerbating it. Last night she woke up coughing so hard that she threw up in her bed.

Mal has also become accustomed to having her PICC line, and resumed normal use of her right arm. The twice daily heparin flushes to keep the end of the IV from clotting have gone from traumatic to annoyance for Mal, and as we approach the one week mark since her surgery to implant the PICC, we are hoping that eventually the practice becomes routine. Baths are still a bit difficult, but also seem to be getting better.

As well as Malorie is doing, Rachel and I are still struggling to find the perspective that Maddie's parents held. Sometimes we are happy, but other times it is more difficult to remain upbeat. Molehills seem to turn into mountains regularly these days. Where I used to be a pretty even keeled person, able to keep a cool demeanor and calm disposition during stressful times, now my moods seem to swing erratically through extremes. Joy one moment, anger the next. For every moment I spend with the kids, happily watching them play, there is also a moment of darkness, when I am frightened of the path to come. At times I worry more than I should, and fight to remind myself of the great blessings we have already been given.

So tonight I want to focus on "At Least," the statement that always seems to be a prelude to something we have going for us instead of the negative aspects of the situation. At least Mal's cancer seems to be controlled. Victory is hard to measure in this war, but we have won all the key battles so far. At least we have each other. Our family is drawing closer by the day, and this episode has redefined our relationships with friends, family and God. At least my job situation is stable. It is stressful to worry about pulling my weight at a time like this, but my coworkers have really done a lot to relieve that stress by being understanding and thoughtful. At least we're not hungry. We may be tired, but we're well fed, warm, safe and secure at night.

Things are probably going to get worse before they get better. And I know that I will continue to struggle to find perspective at the times I am feeling low. But thoughts of Maddie, and her family rallying around her in her moment of conquest over radiation all while knowing their difficult road ahead will help to remind me to keep "at least" on the tip of my tongue. We don't know how Maddie's battle with cancer will turn out... Mal's either for that matter. But at least we made it this far. At least we get to see those two courageous girls live to inspire us tomorrow.

Thursday, January 5, 2012

The Dark

I'm thirty years old, and still flabbergasted by how quickly it gets dark in the winter. In the summer, colors hang in the air for what seems like hours after the sun has vanished beneath the horizon. Brilliant hues of orange, red, purple and yellow paint the skyline, making the most bleak of landscapes seem palatable and making beautiful landscapes seem like a good canvas painting come to life. Even in the fall, the sun puts out small protests of color at twilight, a final attempt at staving off night's cruel ascent. But in winter, the sky goes from grey to black in an instant, almost as if the day has been banished from the sky and hastily escorted from the premises. And then all that's left is this void, this black nothingness that lasts longer and longer each night. The stars and moon offer glimmers of hope that something, someone, is out there; that there is a light at the end of the tunnel that is the earth's nocturnal slumber. But when you look straight ahead, it's just black.

Malorie had surgery for her PICC line insertion today. Everything went well, and she is resting peacefully now, preparing for her first radiation treatment tomorrow morning. But pulling into that hospital this morning, listening to the endless parade of doctors and nurses repeating directions and side effects, watching Mal wake up and recover from her medicated sleep - it was all black. I felt like the color that had been present in our lives over the past month was ripped away and all I was left with was black. Dark black.

I couldn't stop fidgeting in my seat whenever a doctor or a nurse started to describe the procedure to put in Mal's IV access line. They placed the PICC line using ultrasonic pulses to guide a tube through a vein and rested it just outside of the heart. That sounds awful, but I guess better than the alternative. If Mal's two year old veins were not yet large enough to support the PICC, a broviac would be placed in her chest by going through the jugular vein. There is no way to convey how helpless one feels while watching their kid suffer. All day after the surgery, Mal referred to her PICC line as her "big band aid" because the dressing for it stretches from her elbow to her shoulder on her right side. She held her hand out at a ninety degree angle for most of the night, refusing to use her right hand. She was a mess after eating with her left hand for the first time in ages. She didn't seem to be in pain, just unwilling to use that arm.

This afternoon a home care nurse came by to demonstrate how to flush the IV line, as Rachel and I will need to do it once daily on weekdays and twice a day on weekends since Mal will not be seen by doctors on those days. It has to be done to prevent clotting at the end of the line, because if that happens, she will need a new surgery and a new PICC. I'm sure it will become a menial task eventually, but for today it was torturous. Rachel cried as she prepared herself to do it. I avoided the duty due to a cold I am fighting, as we need the PICC to stay sanitary to stave off infections. Mal went ballistic as it was flushed, even though the nurse assured us she could not feel a thing. Micah sat on the couch, taking it all in. Bathing with the PICC is an adventure as well, since her bandage must stay dry. Thus, we learned how to wrap Mal's arm in cling wrap, tape and washcloths to keep it dry. Mal's bath tonight was about a quarter inch deep.

It was warm out today, but I still knew it was winter. The sun vanished too soon, whisked away from us before we were ready. And it's going to get colder, more harsh, and stay darker longer before it gets any better. That's fine. I hope it's a brutal, nasty, cold and bitter winter. It fits my mood right now. But as certain as I am that this winter is going to suck, I also know that it will end. Tomorrow morning the sun will rise, and assert its will upon the day. And no matter how cold I am, if I ever feel bad at night, like it is too dark, I will look up to the heavens and see the stars and be reminded of the light at the end of the tunnel. Summer will come. I will once again marvel at the colorful brilliance that the summer sun brings. But for now I just want to stare straight ahead and revel at how it all just feels so dark.