Sunday, February 26, 2012

Open Letter to Readers

Dear Friends,

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

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

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

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

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

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

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

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



Wednesday, February 15, 2012

Tomorrow is the End and The Beginning

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

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

Sunday, February 12, 2012

And Then There Were Seven...Or Four.

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

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

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

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

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

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


Sunday, February 5, 2012

Mal's Palindromes

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

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

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

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

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

Thursday, February 2, 2012

Given Much

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

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

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

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

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

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

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