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!

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)

http://s1150.photobucket.com/albums/o615/rrkteach/?action=view&current=Malorally.mp4

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.

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 malorally@yahoo.com. 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.

Sincerely,

Billy

Sometimes You Don't Need Words

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.

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.

XXXXXXXXXXXXXXXXXXXXXXXXXX - - - - ? ? ?

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.