tag:blogger.com,1999:blog-91783405641245854022024-02-06T21:32:46.212-05:00Two Babies! Two Babies!Billy and Rachel tell tawdry tales of twins (and the events leading up to twins).The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.comBlogger148125tag:blogger.com,1999:blog-9178340564124585402.post-48219287950434284492012-11-11T08:31:00.000-05:002012-11-11T08:31:23.334-05:00One Year Ago Today
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<span style="font-family: Calibri;">“You never talk about Mal-o-Rally anymore,” Rachel said to
me a couple of weeks ago. <span style="mso-spacerun: yes;"> </span>It was more a
diagnosis than an accusation, and it certainly was not something I could
deny.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>“Terrific,”
“You’d never know she was sick,“ and “we’re optimistic for the future” have
become my go-to phrases.<span style="mso-spacerun: yes;"> </span>Typically I am
not pressed for more, so I don’t ever dive into the emotions of the
family.<span style="mso-spacerun: yes;"> </span>I have been able to wall off
conversations regarding fear, death, love or parenting, instead parsing them
down into ten word blurbs of positivity.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>I can cruise through it without flinching,
offering little more than the facts of the case and a bright outlook on our
future.<o:p></o:p></span></div>
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<o:p><span style="font-family: Calibri;"> </span></o:p><span style="font-family: Calibri;">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.<span style="mso-spacerun: yes;"> </span>Today is the one year anniversary of her
diagnosis.<span style="mso-spacerun: yes;"> </span>One year out from what
remains the worst day of my life.<span style="mso-spacerun: yes;"> </span>During
my talk with Rachel regarding my reluctance to reminisce about our ordeal, she
caught me a bit off guard.<span style="mso-spacerun: yes;"> </span>“I think you
have forgotten the work you put into the blog, and how good it was for you,”
she told me.<span style="mso-spacerun: yes;"> </span>I confess that my entries
were a creative form of therapy for me.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<o:p><span style="font-family: Calibri;"> </span></o:p><span style="font-family: Calibri;">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.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>I had not even checked the comments to that
post.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>Of course, that was not the case for me.<span style="mso-spacerun: yes;">
</span>I never turned my back on it, but I certainly did hide it down in the
depths of my being.<span style="mso-spacerun: yes;"> </span>That night I poured
through the posts I had written, and I was placed back in a nightmare.<span style="mso-spacerun: yes;"> </span>I remembered the sleepless nights, the worry,
the small pieces of hope that made us smile.<span style="mso-spacerun: yes;">
</span>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.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">The simple fact is that our family is now, without a doubt,
back to normal.<span style="mso-spacerun: yes;"> </span>For ninety-five percent
of the time I am able to pretend that there was never anything wrong with
Malorie, and I love that.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>Her hair is all growing back and it is full of luscious brown curls when
she wakes up in the morning.<span style="mso-spacerun: yes;"> </span>Mal finds
the beauty in any situation, and makes a beautiful situation feel like it will
overwhelm you.<span style="mso-spacerun: yes;"> </span>Last month she found a
leaf on the ground that had five colors; green, yellow, orange, red and
purple.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Maybe that is why I subconsciously forced myself away from
the blog.<span style="mso-spacerun: yes;"> </span>It, for me, has come to
represent something I wanted to distance myself from; Malorie’s sickness.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>There is no rule saying that these two references
can’t coexist, but for me they don’t.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">Micah has continued to match Malorie’s achievements in
lock-step.<span style="mso-spacerun: yes;"> </span>His capacity to learn and
remember still amazes Rachel and me.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>He is a work of art full of
frenetic energy and minute details – constantly changing and learning.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">Rachel and I have done well too this past year.<span style="mso-spacerun: yes;"> </span>I got back into shape, began flying for the
Navy Reserve again, and have resumed full duties at my civilian job.<span style="mso-spacerun: yes;"> </span>Rachel continues to amaze as a parent and a
wife, persistently challenging the family to learn more, to do more, and to be
more.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">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.”<span style="mso-spacerun: yes;"> </span>Then my daughter got cancer.<span style="mso-spacerun: yes;"> </span>The bad news is there is no happily ever
after out there.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>For that, I am forever
thankful.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">Thank you again to all the wonderful people who tolerate my
less-than polished writing and unspecified delays to read this blog.<span style="mso-spacerun: yes;"> </span>Your care and love for our family truly did
carry us through some dark, dark times.<span style="mso-spacerun: yes;">
</span>And to all the other loved ones who simply care for and love our family,
thank you to them as well.<span style="mso-spacerun: yes;"> </span>All of you
have helped us find our way in this life.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>Thank you for your support, and thanks for
reading.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Last night, Malorie told Rachel, “Mom, I didn’t like having
a brain tumor.”<span style="mso-spacerun: yes;"> </span>And for all the words
I’ve written, I’m not sure I could have said it any better.<span style="mso-spacerun: yes;"> </span>Happy One Year Out Day!</span></div>
The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com2tag:blogger.com,1999:blog-9178340564124585402.post-37659601593389397532012-04-05T21:43:00.006-04:002012-04-06T21:56:01.197-04:00Mal's First ScanI 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.<br /><br />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.<br /><br />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)<br /><br /><a href="http://s1150.photobucket.com/albums/o615/rrkteach/?action=view&current=Malorally.mp4">http://s1150.photobucket.com/albums/o615/rrkteach/?action=view&current=Malorally.mp4</a><br /><br />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.<br /><br />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.The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com3tag:blogger.com,1999:blog-9178340564124585402.post-65695248890582129752012-02-26T16:02:00.007-05:002012-02-26T23:01:17.817-05:00Open Letter to ReadersDear Friends,<br /><br /><br /><div><br /><div><br /><div><br /><div>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. </div><br /><br /><div>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.</div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4nV28m8_WZKiWKvwUKcIDpIBFHRaTr98VnW3rzMqN6gRlfSu0dRLlFeoiJkr4Xr9xNREeBSrN0mkx2_6f6fQBK7bWCxNlsrRZr2GpBLl22njK5W5-b-MXeDVz3GBmfbHQIkYciuGmk_ki/s1600/DSC_5827.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5713660039284413762" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4nV28m8_WZKiWKvwUKcIDpIBFHRaTr98VnW3rzMqN6gRlfSu0dRLlFeoiJkr4Xr9xNREeBSrN0mkx2_6f6fQBK7bWCxNlsrRZr2GpBLl22njK5W5-b-MXeDVz3GBmfbHQIkYciuGmk_ki/s320/DSC_5827.JPG" /></a>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. </div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNUl20Qz4H00XYkC40p6npK1H12dF6Il3tVxuNKBwrQR_P9UdCTFhwSTUA2alsgcb8DTxDPKzfAm5Vpoz2ZUEFRj13sWF4V1h3WdrXTmdrbZsaCUufP5KGUjaUIn6YOMAnYjM0u5MawEUb/s1600/DSC09022.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5713658383201666626" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNUl20Qz4H00XYkC40p6npK1H12dF6Il3tVxuNKBwrQR_P9UdCTFhwSTUA2alsgcb8DTxDPKzfAm5Vpoz2ZUEFRj13sWF4V1h3WdrXTmdrbZsaCUufP5KGUjaUIn6YOMAnYjM0u5MawEUb/s320/DSC09022.JPG" /></a>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.</div><br /><br /><div>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. </div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFeQlivucwQk_OIJpypieiAYZEQPWe_EQ5ajjUIsHEsgkobwzQ2Ht-6CQ5Eucj3n4KBei1dqmx9caTiKWnGtqw2JjGpMqMTJNT8MtPaf38bYVuEFqWxz1dj94FcbZ_L6nOYNJ4nUVh13V5/s1600/DSC_5514.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 214px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5713658385568338066" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFeQlivucwQk_OIJpypieiAYZEQPWe_EQ5ajjUIsHEsgkobwzQ2Ht-6CQ5Eucj3n4KBei1dqmx9caTiKWnGtqw2JjGpMqMTJNT8MtPaf38bYVuEFqWxz1dj94FcbZ_L6nOYNJ4nUVh13V5/s320/DSC_5514.JPG" /></a>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.</div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbzogwB0PVLKyKC-BRxQBoS_9YVQfKnkIV3o5VwVk6mGjeiLrIEJd4LWLLQM1TfaolowgiWVCTA-paRofQUmPr7_2U6HbYv5gqh1mwFUR2RS9FFUIbqk-nmvit7Sl0XPp8VpCu5MPpqdcC/s1600/Mal-O-Rally_Flyer.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5713658487032122370" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbzogwB0PVLKyKC-BRxQBoS_9YVQfKnkIV3o5VwVk6mGjeiLrIEJd4LWLLQM1TfaolowgiWVCTA-paRofQUmPr7_2U6HbYv5gqh1mwFUR2RS9FFUIbqk-nmvit7Sl0XPp8VpCu5MPpqdcC/s320/Mal-O-Rally_Flyer.jpg" /></a>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 <a href="mailto:malorally@yahoo.com">malorally@yahoo.com</a>. 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.</div><br /><br /><div>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.</div><br /><br /><div>Sincerely, </div><br /><div>Billy</div></div></div></div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com2tag:blogger.com,1999:blog-9178340564124585402.post-56110296146217490892012-02-16T23:49:00.002-05:002012-02-17T00:04:47.318-05:00Sometimes You Don't Need Words<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dymetV9Y8Ggd9q29nM_BnOZmdnqQoXsZiUxs4CnH4eqYM588fwavzkcS1qWrOypE8q7oWB5D7fYpADGRacyOA' class='b-hbp-video b-uploaded' frameborder='0'></iframe>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com9tag:blogger.com,1999:blog-9178340564124585402.post-20412870571950899772012-02-15T21:59:00.002-05:002012-02-15T22:42:46.049-05:00Tomorrow is the End and The Beginning<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR6n9ti9ylMXd4lA-plymPPwGicrbpi9H3-JcPd0NBhswx1kog97VPwfnXAa10qQ9ntaryx_brDHaT4sJ9QfHktZPcaJjOwqIV8ArN6s7Zbzq38cKITnHT07G4uRnUw-8Hkg3UjVov9-i2/s1600/DSC_5636.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 214px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5709573709900307010" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR6n9ti9ylMXd4lA-plymPPwGicrbpi9H3-JcPd0NBhswx1kog97VPwfnXAa10qQ9ntaryx_brDHaT4sJ9QfHktZPcaJjOwqIV8ArN6s7Zbzq38cKITnHT07G4uRnUw-8Hkg3UjVov9-i2/s320/DSC_5636.JPG" /></a>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.<br /><br /><br /><div></div><br /><div>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.</div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com4tag:blogger.com,1999:blog-9178340564124585402.post-73148895722565450622012-02-12T00:02:00.002-05:002012-02-12T00:33:10.753-05:00And 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. <br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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?<br /><br />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.<br /><br />XXXXXXXXXXXXXXXXXXXXXXXXXX - - - - ? ? ?The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com4tag:blogger.com,1999:blog-9178340564124585402.post-40439060480619775902012-02-05T16:02:00.004-05:002012-02-05T16:47:16.586-05:00Mal's Palindromes<div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8B9TrKxlRFJfUZvA7rtxAplKRYvUD3A_1QjQ-hF2Hox00JskKgXzJQ6RYEtC-33By1ggRbFp5WgGblaRHXUZyZlM1dxM8o6071mzFxuRNXyHa8QFakqXZWhp4s06u-vgLD1fuZzJ_BW3C/s1600/DSC08929.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5705770624059440002" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8B9TrKxlRFJfUZvA7rtxAplKRYvUD3A_1QjQ-hF2Hox00JskKgXzJQ6RYEtC-33By1ggRbFp5WgGblaRHXUZyZlM1dxM8o6071mzFxuRNXyHa8QFakqXZWhp4s06u-vgLD1fuZzJ_BW3C/s320/DSC08929.JPG" /></a>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. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUp7wnt3cuTWVyO0D0P8EbsxR0ssKJvCoAf_lwMQkQyXNwJx0_Vr2qXG-pNFkCtRlMZ51ZvOgPVPtOUGbAxdV6otQfz3BpXq6GztBy69dkk03SK93NgpoYSirg1oryHKtbTyW6nQpoUCY7/s1600/DSC08949.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5705770630559743378" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUp7wnt3cuTWVyO0D0P8EbsxR0ssKJvCoAf_lwMQkQyXNwJx0_Vr2qXG-pNFkCtRlMZ51ZvOgPVPtOUGbAxdV6otQfz3BpXq6GztBy69dkk03SK93NgpoYSirg1oryHKtbTyW6nQpoUCY7/s320/DSC08949.JPG" /></a>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.<br /></div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie-cbEtuiZk6plRkKofRfNSdXdD3d7Qs-rASRPJUum_wxuyOotEXlWu8cPwuS0dIFshKkHpkX_aQs5fKnGIk2diRrevJhqVJTgnk2ylgVUSxSmTOZV8STl1RNCiYjv830KYivfbYYekth5/s1600/DSC08922.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5705770616286323810" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie-cbEtuiZk6plRkKofRfNSdXdD3d7Qs-rASRPJUum_wxuyOotEXlWu8cPwuS0dIFshKkHpkX_aQs5fKnGIk2diRrevJhqVJTgnk2ylgVUSxSmTOZV8STl1RNCiYjv830KYivfbYYekth5/s320/DSC08922.JPG" /></a>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:</div><br /><br /><div>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.</div><br /><br /><div>Micah (pushing my nipples): Are these your belly buttons Dad?<br />Me: Nope.<br />Micah (pushing my nipples again): What are these Daddy?<br />Me: (silence)<br />Rachel (from the side of the bathtub where she was bathing Mal): Those are your daddy’s nipples buddy.<br />Micah: Are these your nippos daddy?<br />Me: Yeah bud, those are my nipples.<br />Micah (still fiddling with my chest): Your nippos are kinda squishy, daddy.<br />Me: Thanks a lot man.<br />Micah (now focusing his attention on the rest of my torso): You are kinda squishy, daddy.<br />Me: OK, that’s it. I’m putting my shirt back on.<br /><br />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.</div></div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com11tag:blogger.com,1999:blog-9178340564124585402.post-75660332031123498092012-02-02T23:02:00.004-05:002012-02-03T00:08:43.171-05:00Given MuchWhile 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.<br /><br /><br /><div><br /><div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHsqPhjn7PNyhyphenhyphenRVxKmy_WJzk0hHKaA_M3P8LPd3RF3Geio7seAHxnJVliBmVCkqpEHU7aWfMvmsPYrc2b4ca_SlkrE5IADz2hkSqIiPn0M6XSDCn6QEDVKTNlZbmMGo_3RB83AQyvQc57/s1600/corner2.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5704769645968297122" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHsqPhjn7PNyhyphenhyphenRVxKmy_WJzk0hHKaA_M3P8LPd3RF3Geio7seAHxnJVliBmVCkqpEHU7aWfMvmsPYrc2b4ca_SlkrE5IADz2hkSqIiPn0M6XSDCn6QEDVKTNlZbmMGo_3RB83AQyvQc57/s320/corner2.jpg" /></a>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.</div><br /><div></div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizbYGdMrt4fy_c-Mnq3Db2UdqNnL2UAm1XJoK9rsoTj-3NYjdYNQNDdNbB8PLfNLAqpiR0nzMek0N-Q1JBPHM5WmPk1fI16kxypDU-ijJVs5RLQgHSbCuhGk-HEfxJ0YuUFg5yoX1kVDxK/s1600/corner1.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5704769639959291970" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizbYGdMrt4fy_c-Mnq3Db2UdqNnL2UAm1XJoK9rsoTj-3NYjdYNQNDdNbB8PLfNLAqpiR0nzMek0N-Q1JBPHM5WmPk1fI16kxypDU-ijJVs5RLQgHSbCuhGk-HEfxJ0YuUFg5yoX1kVDxK/s320/corner1.jpg" /></a>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. </div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGqXeXHTe3uhrGt-gChzhg212ZI7sICiGLmFyRmhIZ7GdqFjBKVc3vpcnJpRO4cidZS0gJbcviPiTCw2NvB0zvcWoUjdEn8xi376zlMw_KFS7BP52tGJCoblNYiI7U_IstpAoIvolQf0yw/s1600/DSC08911.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5704769651417782882" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGqXeXHTe3uhrGt-gChzhg212ZI7sICiGLmFyRmhIZ7GdqFjBKVc3vpcnJpRO4cidZS0gJbcviPiTCw2NvB0zvcWoUjdEn8xi376zlMw_KFS7BP52tGJCoblNYiI7U_IstpAoIvolQf0yw/s320/DSC08911.JPG" /></a>After some furious grass-roots fundraising that included Rachel going door-to-door at some local businesses, we <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZUE-9kDp9nbH8ZFpIJZ30r5JR-3IIBFuF5uDvMFRK_0014Rt7HAa2EOqWNbMBC5qVsls9dTVq4rjO9AI9WNHE5gZA9BbfTt123bw5Q1t8qrSFTuDn8qEllYhNOcH0Un2TaSkIaaVe8VTJ/s1600/DSC08910.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5704769654728907906" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZUE-9kDp9nbH8ZFpIJZ30r5JR-3IIBFuF5uDvMFRK_0014Rt7HAa2EOqWNbMBC5qVsls9dTVq4rjO9AI9WNHE5gZA9BbfTt123bw5Q1t8qrSFTuDn8qEllYhNOcH0Un2TaSkIaaVe8VTJ/s320/DSC08910.JPG" /></a>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. </div><br /><br /><div>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.</div><br /><br /><div>For those interested in contributing to Mal's benefit either by attendance or other means, more information will be posted in the coming weeks. </div><br /><br /><div>XXXXXXXXXXXXXXXXXXXX - - - - - - - - - - - - -</div><br /><br /><div>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.</div></div></div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com5tag:blogger.com,1999:blog-9178340564124585402.post-23046087769692067642012-01-27T23:01:00.007-05:002012-01-28T16:03:47.301-05:00It's No Big DealIt'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?<br /><br />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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij4yonUF5pN1LBLDCgxIYeLupe0Ba6yzg7Va7Jn0kOH8I30sFw5luzaa0yft7qL56c3whaFi7BRFM8i-h7c9O2aKGsjlGxzYttYIKMuWKXX4sD3t4KA4Mvvq-2yKuqVnjbJwrsIp7bSVqZ/s1600/DSC08909.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5702547567975576498" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij4yonUF5pN1LBLDCgxIYeLupe0Ba6yzg7Va7Jn0kOH8I30sFw5luzaa0yft7qL56c3whaFi7BRFM8i-h7c9O2aKGsjlGxzYttYIKMuWKXX4sD3t4KA4Mvvq-2yKuqVnjbJwrsIp7bSVqZ/s320/DSC08909.JPG" /></a>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."<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />XXXXXXXXXXXXXXXX - - - - - - - - - - - - - - - - -The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com7tag:blogger.com,1999:blog-9178340564124585402.post-59216995293289533692012-01-21T00:38:00.003-05:002012-01-21T01:07:09.752-05:00The PICC That Wouldn't StayOnce 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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />XXXXXXXXXXX - - - - - - - - - - - - - - - - - - - - - -The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com5tag:blogger.com,1999:blog-9178340564124585402.post-62129337580556358452012-01-19T00:16:00.007-05:002012-01-19T00:41:11.033-05:00Dynamic RoutineRoutines 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.<br /><br />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. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk1TcG7YSCIEbOKnNNR-GNTGcjHJlF0xrAu7q8a3Z3A1Jp7_C_h_OYRwummv8qNuLFKUnA2uPD0v3Pv5tA7RUyHqqp_-78Ppmn2Q8LdzItGYliMyikBoJUIvAGPluccsITQIMIcjRJuujl/s1600/breakfast.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5699211978791564034" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk1TcG7YSCIEbOKnNNR-GNTGcjHJlF0xrAu7q8a3Z3A1Jp7_C_h_OYRwummv8qNuLFKUnA2uPD0v3Pv5tA7RUyHqqp_-78Ppmn2Q8LdzItGYliMyikBoJUIvAGPluccsITQIMIcjRJuujl/s320/breakfast.jpg" /></a>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.<br /><br />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.<br /><br />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.<br /><br />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: <a href="http://www.mybottlesup.com/2012/01/tutu-lady-helps-our-klug-crew">http://www.mybottlesup.com/2012/01/tutu-lady-helps-our-klug-crew</a> 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.<br /><br /><br /><div><br /><div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjucucdZRjonJynPrSTWmx6UWZEcpJggH-_qq4z2ySeRPoR-GhheMrUI5LhKcNyD-QoYC8KUOuBbx3F6lWZsfPIIpWpotDGrFy6-eAzp_Nr453ONlaixJcl2zpvgYz4pRTpSOoyDRadNBCY/s1600/DSC08879.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5699211983825732498" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjucucdZRjonJynPrSTWmx6UWZEcpJggH-_qq4z2ySeRPoR-GhheMrUI5LhKcNyD-QoYC8KUOuBbx3F6lWZsfPIIpWpotDGrFy6-eAzp_Nr453ONlaixJcl2zpvgYz4pRTpSOoyDRadNBCY/s320/DSC08879.JPG" /></a></div><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQW9ltpq6eKuQBL5HMDTg7cjjVVTZ_v8ivW_PmHcs8l3ca5EefS8ZDYF2MXv1aFmMAwPkSIFmHOZdmuJJsTqTOxITMWDlvR0eJEt7peuOBuNiGZRDaAsBtuoDdmUwO5wBgshg_A2Ln5slE/s1600/DSC08885.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5699211991370030434" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQW9ltpq6eKuQBL5HMDTg7cjjVVTZ_v8ivW_PmHcs8l3ca5EefS8ZDYF2MXv1aFmMAwPkSIFmHOZdmuJJsTqTOxITMWDlvR0eJEt7peuOBuNiGZRDaAsBtuoDdmUwO5wBgshg_A2Ln5slE/s320/DSC08885.JPG" /></a></div><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJiKpRboaVoEzHsv24ZGiYJOy03GnXQsHGbr0hxqQGwl70BrQgtr-U3KtaNRXRoaqkOGLcS_LUMg5hmEQ5Khj8aPt-ErPtZmU2HlHyBcbYdtk0Dcj7Jh30SGSGEmDjpMthyFzQQMK-fcAQ/s1600/DSC08902.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5699211996604252370" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJiKpRboaVoEzHsv24ZGiYJOy03GnXQsHGbr0hxqQGwl70BrQgtr-U3KtaNRXRoaqkOGLcS_LUMg5hmEQ5Khj8aPt-ErPtZmU2HlHyBcbYdtk0Dcj7Jh30SGSGEmDjpMthyFzQQMK-fcAQ/s320/DSC08902.JPG" /></a><br /><br /></div><br /><br /><br /><br /><div></div><br /><br /><br /><br /><div></div><br /><br /><br /><br /><div></div><br /><br /><br /><br /><div></div><br /><br /><br /><br /><div>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.<br />XXXXXXXXX – – – – – – – – – – – – – – – – – – – – – – – – </div></div></div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com2tag:blogger.com,1999:blog-9178340564124585402.post-60125808748742891132012-01-11T20:50:00.000-05:002012-01-11T21:51:25.529-05:00At Least We're BreathingYesterday 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."<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com5tag:blogger.com,1999:blog-9178340564124585402.post-25321805774364024392012-01-05T23:56:00.001-05:002012-01-06T01:02:17.597-05:00The DarkI'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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com5tag:blogger.com,1999:blog-9178340564124585402.post-44564668813123462812011-12-29T23:53:00.006-05:002011-12-30T01:21:04.663-05:00Christmas Fear<div>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 <u>Of Mice and Men</u>, 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.<br /><br /><br /><div><br /><div>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."</div><br /><br /><div>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. </div><br /><br /><div>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.</div><br /><br /><div>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.</div><br /><br /><div>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.<br /><br /></div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvU5f_bBW2O939DpWEL3wY1Y2n5LFeiPVC0NnkpNXWcvnoK_tUb6oTSh1NEfFAlmVsXfv3lFf8JK7LjrgWTJoAVDZCDF0YZqkpcOCTtie_cZlShck1f2KBjPVCVTVEAxzTeMYy-wbv-noH/s1600/DSC08681.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5691797839816866034" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvU5f_bBW2O939DpWEL3wY1Y2n5LFeiPVC0NnkpNXWcvnoK_tUb6oTSh1NEfFAlmVsXfv3lFf8JK7LjrgWTJoAVDZCDF0YZqkpcOCTtie_cZlShck1f2KBjPVCVTVEAxzTeMYy-wbv-noH/s320/DSC08681.JPG" /></a></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSpZTg8IaNKTgEtg9MzXuHEuw1yRG6jWYrN1lRL84t__Iq3aihmNK_nDLSY_oKuZDZyMAInr0HRfgc_uObvYebrcDogrTGzPa2PDUpQg0ywotsaZRr7QRDDiWCG85nIQvobFHfql8dUckI/s1600/DSC08688.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5691797844940003314" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSpZTg8IaNKTgEtg9MzXuHEuw1yRG6jWYrN1lRL84t__Iq3aihmNK_nDLSY_oKuZDZyMAInr0HRfgc_uObvYebrcDogrTGzPa2PDUpQg0ywotsaZRr7QRDDiWCG85nIQvobFHfql8dUckI/s320/DSC08688.JPG" /></a></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS3BhCLOek1gTEMEEuV3Mf4wbumrL8fJW9E6es77_Xv6kgDyYeLnbtBlmFyY4Q02PKnIYNikfIK0Quwzqf1ncTW-eCZ_2YsQAacXbQMGKd_KlXXYp7OUYKPK3caIa_X5wOrVjzpL1Mqau2/s1600/DSC08744.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5691797851292860530" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS3BhCLOek1gTEMEEuV3Mf4wbumrL8fJW9E6es77_Xv6kgDyYeLnbtBlmFyY4Q02PKnIYNikfIK0Quwzqf1ncTW-eCZ_2YsQAacXbQMGKd_KlXXYp7OUYKPK3caIa_X5wOrVjzpL1Mqau2/s320/DSC08744.JPG" /></a></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwN3-OATzTxRwcIOYzuy0JBUtOwqMnKSVnCq0d0urO3Rcm7ijxCs1UCS8rWaVwL-YMlpY0r6ao-yzr4qmE2e2hTS3hexDXfMO3mFD_8VpXOfiNzabUI4t9VyDTB6FEnm4D5nXyGGyWwCu4/s1600/DSC08857.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5691797855200764754" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwN3-OATzTxRwcIOYzuy0JBUtOwqMnKSVnCq0d0urO3Rcm7ijxCs1UCS8rWaVwL-YMlpY0r6ao-yzr4qmE2e2hTS3hexDXfMO3mFD_8VpXOfiNzabUI4t9VyDTB6FEnm4D5nXyGGyWwCu4/s320/DSC08857.JPG" /></a></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><div>*** 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. *** </div><br /><div><br /><a href="http://www.webstergardens.org/index.php?option=com_preachit&id=28%3Achristmas-fear-christmas-eve&view=audio&Itemid=187#.Tv1VkVUBjqE.blogger">Christmas Fear (Christmas Eve)</a></div><br /><br /><div>Merry Christmas!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPzsaMQSS-i18Fnsy7MgudH5_WgwtpGwyaDX7Gokztth7qCJVPrX87h-GdgtvNgzzy7vkBzfzLeh1fcBW5LXpXwb_8aDGwYDv1GBVRJjzATMiTWNqhgkHv6Mu-veNIoLrtJAMexJFZk79l/s1600/redhatst.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5691802119439868626" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPzsaMQSS-i18Fnsy7MgudH5_WgwtpGwyaDX7Gokztth7qCJVPrX87h-GdgtvNgzzy7vkBzfzLeh1fcBW5LXpXwb_8aDGwYDv1GBVRJjzATMiTWNqhgkHv6Mu-veNIoLrtJAMexJFZk79l/s320/redhatst.jpg" /></a></div><br /><br /><br /><br /><br /><br /><div></div></div></div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com7tag:blogger.com,1999:blog-9178340564124585402.post-56786981058636238142011-12-18T22:57:00.002-05:002011-12-18T23:35:02.025-05:00Charting a CourseThere 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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com7tag:blogger.com,1999:blog-9178340564124585402.post-81013283558610410362011-12-10T23:30:00.001-05:002011-12-11T00:31:11.848-05:00The Trial<strong>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.</strong><br /><br />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.<br /><br /><br />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.<br /><br /><br />Doctors think they <em>might</em> 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.<br /><br /><br />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.<br /><br /><br />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.<br /><br /><br />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.<br /><br /><br />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?<br /><br /><br />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.<br /><br />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? <br /><br /><br />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.<br /><br /><br />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.The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com17tag:blogger.com,1999:blog-9178340564124585402.post-27895224393139040862011-12-09T23:37:00.002-05:002011-12-10T00:01:38.314-05:00The Waiting Game - Update III 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.<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjtUBimWHNw8d-8alM8MVbwC1HY8YJqHd-Y1fXH8FHHMs06V94lPVg8bW98TbuvswS6A1cI5e4PwgnV2GiR8wuLZ9uPo4ojSijgHvdm6hihqjlhtoTFkzovLv8NHmU9J02DtqwIWzlGN2K/s1600/DSC08613.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5684360117777994258" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjtUBimWHNw8d-8alM8MVbwC1HY8YJqHd-Y1fXH8FHHMs06V94lPVg8bW98TbuvswS6A1cI5e4PwgnV2GiR8wuLZ9uPo4ojSijgHvdm6hihqjlhtoTFkzovLv8NHmU9J02DtqwIWzlGN2K/s320/DSC08613.JPG" /></a>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.The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com6tag:blogger.com,1999:blog-9178340564124585402.post-89883073603986102792011-12-08T21:25:00.002-05:002011-12-08T21:27:40.505-05:00The Waiting Game - UpdateThe 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.The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com1tag:blogger.com,1999:blog-9178340564124585402.post-1074391468232927302011-12-06T00:32:00.005-05:002011-12-06T01:52:05.477-05:00The Waiting GameLet'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?<br /><br /><div><br /><div><br /><br /><div>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. </div><br /><br /><div>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.<br /><br /></div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGe8vppRiBGdmhKOk0GlMtxAGz13NIJ3uTf1rmsZM0ARPuoWTEolkGi5kASnT0AMZUe4XF0NG5lw8tgexg91Tyhun1Zo9r-4_H06_fjSC54jUAdEO3-w32akvz9Fb04Zt68XHwgkRJIYMj/s1600/DSC08577.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5682900573928710882" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGe8vppRiBGdmhKOk0GlMtxAGz13NIJ3uTf1rmsZM0ARPuoWTEolkGi5kASnT0AMZUe4XF0NG5lw8tgexg91Tyhun1Zo9r-4_H06_fjSC54jUAdEO3-w32akvz9Fb04Zt68XHwgkRJIYMj/s320/DSC08577.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigHnq0_BdYWj8LIj4CglcTPO62js5YdGmdixt1KY_9wIkqeVXM4-39N0jPKMvqtj7zmQ4U7nlwipS6-z7FTviztK0OY5QdOFBo9cdw3QJbHmk2ySUxT48qzZZ2q-bd0kocAy3tdPhcRNKp/s1600/DSC08579.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5682900583080687474" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigHnq0_BdYWj8LIj4CglcTPO62js5YdGmdixt1KY_9wIkqeVXM4-39N0jPKMvqtj7zmQ4U7nlwipS6-z7FTviztK0OY5QdOFBo9cdw3QJbHmk2ySUxT48qzZZ2q-bd0kocAy3tdPhcRNKp/s320/DSC08579.JPG" /></a>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.<br /></div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGxSbli48iDHMU5KdcYyLy4CRFmmGhcjJtYZe2gElszf5QoMU45jhdPbaNBIrwr8hEYKOFE3nzxpYsgZ2aKE4Etg8ttYMzsnV2fjtYX3iD9AbJgMpDPR3hXD_ypFHGcVvXVIMMojdD6JXE/s1600/DSC08595.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5682900594826543730" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGxSbli48iDHMU5KdcYyLy4CRFmmGhcjJtYZe2gElszf5QoMU45jhdPbaNBIrwr8hEYKOFE3nzxpYsgZ2aKE4Etg8ttYMzsnV2fjtYX3iD9AbJgMpDPR3hXD_ypFHGcVvXVIMMojdD6JXE/s320/DSC08595.JPG" /></a>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.</div><br /><br /><div>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. </div><br /><br /><div>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.</div></div></div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com4tag:blogger.com,1999:blog-9178340564124585402.post-54543701791738180252011-11-29T23:10:00.005-05:002011-11-29T23:58:07.489-05:00NormalI 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.<br /><br /><div><br /><div></div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgSxFxzWkSDg48ImgtGd93anfBwiN1BV2MYhsxm9dWavTdRirsL3rYjbaS4Tf1vXw2R3NC02e-THISwUFoN5KrcKsOstuyZKWmq-tnDDUC-s-CfGoEC8f0Pqw3t0yMzpFaDJBV685T3zt6/s1600/DSC08565.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5680643337707904322" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgSxFxzWkSDg48ImgtGd93anfBwiN1BV2MYhsxm9dWavTdRirsL3rYjbaS4Tf1vXw2R3NC02e-THISwUFoN5KrcKsOstuyZKWmq-tnDDUC-s-CfGoEC8f0Pqw3t0yMzpFaDJBV685T3zt6/s320/DSC08565.JPG" /></a>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.</div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEQ4LtEoE97OfPINO_GVWjGMZpVB1UjZBiEZ-jxBOMJ0RqFbFVNhHSjzzhvDaHvL2oU0lLpmXGSWZNMysWAUHXD9TYvm6EEiCB6YIvK83o80cHXl6UGiw5H7Y4znhshtjK8Z1JyfIs2pvo/s1600/DSC08561.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5680643344789164546" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEQ4LtEoE97OfPINO_GVWjGMZpVB1UjZBiEZ-jxBOMJ0RqFbFVNhHSjzzhvDaHvL2oU0lLpmXGSWZNMysWAUHXD9TYvm6EEiCB6YIvK83o80cHXl6UGiw5H7Y4znhshtjK8Z1JyfIs2pvo/s320/DSC08561.JPG" /></a>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.</div><br /><br /><div>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. </div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf63oB5TpUPQ09Fl5jh8hQ065usymjX22gqkb_Tkpk9BOI-NOvhyphenhyphenDYyE50GwXvWY4XazWH2g_dOrKqEpOhzHRfsiDqQrGZU20yajrU_DogjoEVqRcAqILEH4F_CQtYz9a0kkFaEoOygtfn/s1600/DSC08568.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5680643340924389234" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf63oB5TpUPQ09Fl5jh8hQ065usymjX22gqkb_Tkpk9BOI-NOvhyphenhyphenDYyE50GwXvWY4XazWH2g_dOrKqEpOhzHRfsiDqQrGZU20yajrU_DogjoEVqRcAqILEH4F_CQtYz9a0kkFaEoOygtfn/s320/DSC08568.JPG" /></a>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.</div></div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com7tag:blogger.com,1999:blog-9178340564124585402.post-88141856776074462822011-11-23T21:41:00.003-05:002011-11-23T22:48:02.390-05:00There's No Place Like HomeDorothy, 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.<br /><br /><div></div><br /><div>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.</div><br /><br /><div>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.</div><br /><br /><div>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.</div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjHYZXomdiDlb0MDSbaTDH1VmuHS0FXKEt-jn8d1EZ_cY-g5kn4Kde1EMvoQEW1-Dj6XjnguhMoB0Gjtixcm4HJ0KRKNSH464-lfKsMU6-mpit6Y33pNH3KsBQOsPOORqfyvHXxloUnXMr/s1600/IMG-20111122-00075.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5678400641038678418" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjHYZXomdiDlb0MDSbaTDH1VmuHS0FXKEt-jn8d1EZ_cY-g5kn4Kde1EMvoQEW1-Dj6XjnguhMoB0Gjtixcm4HJ0KRKNSH464-lfKsMU6-mpit6Y33pNH3KsBQOsPOORqfyvHXxloUnXMr/s320/IMG-20111122-00075.jpg" /></a>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!</div><br /><br /><div>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.</div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com5tag:blogger.com,1999:blog-9178340564124585402.post-40706567055680469822011-11-20T22:02:00.004-05:002011-11-20T23:28:48.694-05:00The Onset of AnnoyanceI 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.<br /><br /><div></div><br /><div>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 <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">gentlemen</span>, I am annoyed.</div><br /><br /><div>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. <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Rach</span> 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. </div><br /><br /><div>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.</div><br /><br /><div>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.</div><br /><br /><div>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,</div><br /><div></div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7xcy96-WKJlImgT28JAg4NBwRsQ3x6XKsp_YsP6-dFgK6bE4ruuwuMxemfsNRv1jS_ynWA5Sa_WUhjbinrNHeqRWSc7NUcpP75OxQGZfy1YCg1Sjacay5EayCYmAtQmYNTq1gC_NmVh66/s1600/coloring.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5677300857330542578" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7xcy96-WKJlImgT28JAg4NBwRsQ3x6XKsp_YsP6-dFgK6bE4ruuwuMxemfsNRv1jS_ynWA5Sa_WUhjbinrNHeqRWSc7NUcpP75OxQGZfy1YCg1Sjacay5EayCYmAtQmYNTq1gC_NmVh66/s320/coloring.jpg" /></a>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. </div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com5tag:blogger.com,1999:blog-9178340564124585402.post-24280660020000006612011-11-18T19:41:00.003-05:002011-11-18T20:14:32.885-05:00Brain Cancer is a BullyWhen 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.<br /><br /><div></div><br /><div>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.</div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw0OfRrwbXuAHFCnUULvaAVryY6YMvVVyzkem9yk50AeiOjkYneNaWD0xRCbYJhJpz4Vvl8M367z_-Uk9INtUs58yMdd5VZHAB2Sg3TZAw6XPZFuoNUYI0D2WEAdMppeytngAN5T6wzi2W/s1600/situp.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5676508686723460034" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw0OfRrwbXuAHFCnUULvaAVryY6YMvVVyzkem9yk50AeiOjkYneNaWD0xRCbYJhJpz4Vvl8M367z_-Uk9INtUs58yMdd5VZHAB2Sg3TZAw6XPZFuoNUYI0D2WEAdMppeytngAN5T6wzi2W/s320/situp.jpg" /></a>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."</div><br /><br /><div>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.</div><br /><br /><div>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.</div><br /><br /><div>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.</div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com6tag:blogger.com,1999:blog-9178340564124585402.post-75125977327815145922011-11-18T15:14:00.003-05:002011-11-18T15:43:01.883-05:00Time Slips AwayToday 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.<br /><br /><div><br /><div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGCbuG50VH5ioOWC9o0kNsUZAh8NfQ5zXipkY15kALUf6RXBW_O4kya1cnouach2k9961OaztgDTptWoMgMrexzfEVPRkfLJl0dvTG6REUhooVnHMbsgW1GiMXOCL1jDA96ezZh0jfM2N4/s1600/mal+walk.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5676437881486799378" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGCbuG50VH5ioOWC9o0kNsUZAh8NfQ5zXipkY15kALUf6RXBW_O4kya1cnouach2k9961OaztgDTptWoMgMrexzfEVPRkfLJl0dvTG6REUhooVnHMbsgW1GiMXOCL1jDA96ezZh0jfM2N4/s320/mal+walk.jpg" /></a>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. </div><br /><br /><div>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.</div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhERkkOqv3Ydjzu2erKoGE1epjTEVEKPtuT1knlr8WocBPISmpey6PH8Ww-pNWERYJk5oKoKGmqKQZX50f2nEU4mhbMXR8lbgRzHz27NlRQJ0op8okMCIlMV6xY3PXzRtFZrqqYnXDXCNMj/s1600/mandm2.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 280px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5676437876114819954" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhERkkOqv3Ydjzu2erKoGE1epjTEVEKPtuT1knlr8WocBPISmpey6PH8Ww-pNWERYJk5oKoKGmqKQZX50f2nEU4mhbMXR8lbgRzHz27NlRQJ0op8okMCIlMV6xY3PXzRtFZrqqYnXDXCNMj/s320/mandm2.jpg" /></a>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.</div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDPCM0kXYNhpHwXP8DMb8p5FMhnCcjivudjzxzfGsSaM0lkXP52C0vyepQ7HQQq2qttOilm7I7dXEgJbwZ2RkEadtrYKza_-WkGC9mkLUFSZcReV1sAcR26jaIMjJsGGChvaXgeY35sCUv/s1600/mandm.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5676437874808476930" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDPCM0kXYNhpHwXP8DMb8p5FMhnCcjivudjzxzfGsSaM0lkXP52C0vyepQ7HQQq2qttOilm7I7dXEgJbwZ2RkEadtrYKza_-WkGC9mkLUFSZcReV1sAcR26jaIMjJsGGChvaXgeY35sCUv/s320/mandm.jpg" /></a>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. </div><br /><br /><div>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.</div></div></div>The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com5tag:blogger.com,1999:blog-9178340564124585402.post-86418081745529576682011-11-17T12:06:00.004-05:002011-11-18T00:03:21.143-05:00How in the World Did We Get to Here?<strong>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.</strong><br /><br />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.<br /><br />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. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgHf8TdtP3hNZckoVjOeUPMo-RmnTH7aDYz7J6jku6_59ACd8lBp4malVo3n0HxgCGkVDfj_H5x5ECin1zfnSyxy9Vxos9a49V6UAwKzwvoiveh6HZf17Gl3FWMdBBAauN87QcxZ_mGC8Q/s1600/sj.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5676196139369246146" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgHf8TdtP3hNZckoVjOeUPMo-RmnTH7aDYz7J6jku6_59ACd8lBp4malVo3n0HxgCGkVDfj_H5x5ECin1zfnSyxy9Vxos9a49V6UAwKzwvoiveh6HZf17Gl3FWMdBBAauN87QcxZ_mGC8Q/s320/sj.jpg" /></a>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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbzpothPcD64VDwiQ4TCIDbAMKYMd-ubtXpf08FJ1KnbS1ZUSt95yj3ZXmMj610QOt3Z8nKh2rh20qmNihw9gpUVL4aQ9wS6zEGvGYe_fdLkd8RCsCuRqxAakQW98MR3KQZ3xniZ0fvgA3/s1600/cg1.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5676196136074802434" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbzpothPcD64VDwiQ4TCIDbAMKYMd-ubtXpf08FJ1KnbS1ZUSt95yj3ZXmMj610QOt3Z8nKh2rh20qmNihw9gpUVL4aQ9wS6zEGvGYe_fdLkd8RCsCuRqxAakQW98MR3KQZ3xniZ0fvgA3/s320/cg1.jpg" /></a>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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxMWKLnNvh0LrDOFxqax0L_crpmqcoQ7de-ir58Hz2q_4TKxhn_7iTmFDQsMYjEk4p_JktvSk6CJJZHirZ883LovkRApHpqRMYrRGIpgu3uur5r8xZSGL2IgbOyGknglnWLuoGd3m9_05b/s1600/cg2.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5676196130760810962" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxMWKLnNvh0LrDOFxqax0L_crpmqcoQ7de-ir58Hz2q_4TKxhn_7iTmFDQsMYjEk4p_JktvSk6CJJZHirZ883LovkRApHpqRMYrRGIpgu3uur5r8xZSGL2IgbOyGknglnWLuoGd3m9_05b/s320/cg2.jpg" /></a>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.<br /><br />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.The Klugshttp://www.blogger.com/profile/07228337979669820197noreply@blogger.com3