Normal

I 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.

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.

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.

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.

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.

There's No Place Like Home

Dorothy, 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.

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.

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.

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.

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!

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.

The Onset of Annoyance

I 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.

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 gentlemen, I am annoyed.

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. Rach 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.

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.

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.

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,

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.

Brain Cancer is a Bully

When 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.

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.

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."

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.

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.

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.

Time Slips Away

Today 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.

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.

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.

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.

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.

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.

How in the World Did We Get to Here?

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.

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.

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. 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Moving Day

Mal's Wednesday got an early start. Because she slept through most of Tuesday, and was only up in fits and spurts, we were waiting and ready for her to finally show some signs that she wanted to stay awake for a longer period of time. However, I am not sure I was prepared for her to want to stay up all night with me. Malorie woke up during her nurse's 2 a.m. check, and then stayed awake until about 4:15. I entertained her as best I could by half-singing/half-yawning songs and telling stories that only make sense at 3 a.m. Then, just after I got Mal to close her eyes and fall asleep, Rachel came in out of the parent's lounge to let me go out and get some rest. What she didn't tell me was that the chair she saved for me was next to a guy who had a bad snoring problem and that he was sawing more logs than Paul Bunyan. I think it was quieter in the PICU than out next to Rip Van Obstructed Nostril.

The daylight hours got off to a poor start as Mal's neurosurgeon said that her brain drained about one-third of what it did on Sunday, but it was still draining too much Cerebral Spinal Fluid to allow her to increase the pressure in her head. That means she will have the ventriculostomy tube in for a bit longer than originally hoped. Also, Mal's IV in her right arm infiltrated, which I learned has a medical definition that has nothing to do with commandos repelling out of a helicopter for a black ops mission. Actually, her vein became too saturated with fluids and leaked it all out into her tissues in her arm. Her arm swelled to about three times it's normal size, and she had to get all three of her IVs pulled and then a new one put in on her left forearm.

After our dual setbacks, though, the day got moving in the right direction when Mal passed her swallow study test. She had to demonstrate that she could still swallow fluids and food, which she did with ease and then asked for more. By the end of the day Wednesday she had the best appetite we have seen from her in almost a week. She still is obsessed with Cocoa Puffs though, as she asked for "cock-a-doodle-doos" nonstop after we asked her what she wanted to eat. We succeeded in convincing her to try something else, too, as she saw Rachel's Cheeto and then asked for some of that, too. Cheetos and Cocoa Puffs, not too sure how high in those brain building Omega 3 fatty acids they are, but man do they taste good together.

Also Malorie had her first physical therapy session, which consisted of reaching a grabbing, and lifting her feet from the prone position. Her next big hurdle to attempt tomorrow is to sit up (with help) and then stay sitting upright (without help). If she can do that, then they will have her attempting layups by Friday and hook shots by Saturday. OK, that is a bit of a fabrication, but I am going on less than 3 hours of sleep. The next test on Friday will be sitting upright with her legs dangling, which moves some blood from the head to the feet, and may make her nauseous.

At around 1:30, Mal was allowed to depart the PICU for her own room up on the 12th floor. Immediately when we got there, Rachel began unpacking gifts and planning where to hang cards and pictures for Mal. We called to schedule a visit for Micah during the dinnertime hour, but then Mal had another meltdown when she was awakened from a nap after only ten minutes. She was shouting at the nurse and at both Rachel and me, and very distraught. We got her to calm down and then fall back asleep, but decided to wait another day or so before we bring Micah in so as not to freak him out entirely.

Yet again today I feel compelled to send a massive thanks to everyone who has been rooting and praying and hoping for Malorie. As her parents, we think she's a pretty special child, and we are just now finding out how many other people feel the same. Thanks again, and please keep us in your thoughts and prayers as we await the results of her biopsy and subsequent treatment plan. Also pray for the other parents in the PICU tonight, as I hope they get to move out with an improving kid soon, too.