It's No Big Deal

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

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

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

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

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

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

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

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The PICC That Wouldn't Stay

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

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

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

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

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Dynamic Routine

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

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

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

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

The only other big break from routine was Saturday morning, when the twins transformed for the first time into Super Micah and Super Mal. If you have not yet read our friend Nicole’s account of procuring the new outfits for the twins, stop reading my blather right now and go to this link: http://www.mybottlesup.com/2012/01/tutu-lady-helps-our-klug-crew and then come back. The pictures will mean a lot more to you if you read her heartfelt and well written blog entry (and watched the video). Thanks, Nic.

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

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

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

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

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

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

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

The Dark

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

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

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

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

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