The Cause of Cancer is.....

one little cell who loses it's way and decides to run amok. That little cell then takes food and resources from good cells which then start to die. The bad little cell then takes over the dying good cells and starts to reproduce. Since the bad little cell has no regard for the cell rules of procreation or any sense of responsibility at all (enough is enough- time to stop- in the biology world it is called apoptosis.)they just keep going, and going, and going. When cells go rogue they have a programmed response for suicide. Cancer cells don't have this response. They are sociopathic little buggers. And each one of their offspring is even worse. And those cancer baby cells go off and create even more baby cells whose problems are even greater(more mutations) than it's grandparent generation. 

What makes these otherwise healthy cells turn into monsters you ask? What exactly causes this cell to lose it's way?  It depends. On A LOT of things. Sheryl Crow, a breast cancer survivor, recently weighed in on her beliefs. She reminded people not to leave bottled water in the car or sun because it causes the release of chemicals into the water.  There is an email that circulates periodically with this warning. A quick check on snopes.com reveals what my gut instinct and 4 years of Biology and chemistry told me- this is not entirely true.  Sheryl Crow did mention not leaving bottled water in the sun because docs have actually been saying this. It makes sense, have you tasted bottled water that's been left out in the sun? It tastes like the bottle. I, as a rule, do not like to taste my water. I am a big fan of the cool, crisp, wet nothingness taste of the beverage that is water. But the claim is that heated water bottles release dioxins which on it's own just sounds bad. Dioxins are known carcinogens and includes a couple different chemical compound complicated biproducts and are formed from industrial manufacture and can also be found in....wait for it....cigarettes. It is also "organic"- but that I will have to leave for another discussion.  Now technically bottled water bottles(soda bottles, etc) are made from PET- and do not break down to release dioxins.  That is not to say that when left in the sun, chemicals are not released into the beverage.  But your body is programmed to get rid of chemicals. There are chemicals and chemical biproducts in everything. Your body manufactures, converts, stores all kinds of chemicals. You don't want to consume nasty chemicals that cause cancer, but common sense also has to prevail. Was it the bottles of water left in the hot car that caused Sheryl's cancer or was it the years of breathing smoke filled air while performing?  Hard to say, maybe she just had a rogue little cell that could and it did and couldn't stop. I mean have you seen the woman's body- obviously she takes care of it.  Sometimes you can do everything right and the cells go wrong. And sometimes someone can smoke and drink for 60 years and never once get cancer. SO what's a person to do?

If you are on the go, you can grab a bottled beverage. Water is a healthier option but ohhhh nooo- what if it travelled on a truck that wasn't cooled and the bottle broke down chemicals into it? You could go for soda- but really- what IS soda?  I mean technically it is "natural" in a literal sense but other than water and high fructose corn syrup...what do you recognize in the ingredient list? High Frustose Corn syrup has also recently been revealed and glucose's misfit brother. What about the Phosphoric acid? Yummy- it's what gives cola that syrupy, tangy quality as well as the ability to remove rust.... If you are worried about your sugar intake, you might choose a diet soda. Because the only thing better for your body than sugar is aspartame....mmmm some of the primary biproducts in your system are methanol and then another on of the further breakdown products is formaldehyde. Why not get a jumpstart on preserving your internal organs for the afterlife??? I LIKE soda. I know it's a chemical minefield. I don't drink it every day. That is the key. If you drink 6 sodas a day- your body is being exposed to all kinds of icky chemicals and byproducts it doesn't need.  Water, even in a bottle that may or may not have been on a heated truck/boat/plane will have less negative impact on your body. Moderation.

All these issues beg the question- what responsibility does the government have in regulating these products? Well with certain health care reforms, we may soon see. As seen in European countries- if taxpayer dollars get funnelled into healthcare, taxpayer representatives are going to get a say in what and how what goes into those taxpayers bodies.  I personally feel that people are responsible for what goes into their own bodies. Sure I believe in full disclosure on food items, and I try to choose healthier options. I am responsible for what goes into my body, not the government. I can make choices.   I already have one mutation in my cells that predisposes me to cancer. The average person could drink soda all the time, smoke some cigarettes and have a drink of alcohol a day before their cells might acquire what my cells already have going for them. Mutants. I am hoping that with more government "involvement" in healthcare we might see some more funding for research. Not just for cancer, but for so many of the conditions that affect quality of life moreso than quantity of life. Maybe they will find a cure for stupidity...oh but I digress. An ounce of prevention....

And sometimes, no matter how good a start you give them, whether you give them the best nutrition, keep them away from bad chemicals and too much sunshine- cells go bad.  As always, the best thing to do is live life the best you can. Embrace the good and hurdle the bad. Are you telling me that in all our quests to find portable, lower calorie, lower sugar foods so we can eat more of what we love with no nutritional benefit to our bodies...the result might be BAD? NO way.

The Results are In

Monday was what shall henceforth be referred to as Scanfest.  It involved 2 hours of prep, 2 hours of scans and 2 days of worry. Lily impressed us by exhibiting about a quarter of the stress level I felt. Phil offered to take her so I could clean. Basically, so he could read Sports Illustrated in quiet for a couple of hours. He's seen me at these things and realized that I could better channel my nervous energy around the house as opposed to wearing a new path in the halls of radiology. I refuse to leave the waiting area. What if she needs me? Instead, it is much more productive for me to remove all the drawers in the kitchen- empty and clean their contents.  One would suppose that simply doing routine cleaning would suffice, but one would be wrong. Such routine work would leave portions of the conscious mind available to wander to what ifs.  Doing a spring cleaning maneuver such as total drawer removal in conjunction with keeping Bella entertained definitely passes time most efficiently.

Lily did much better with the anesthesia this time. We didn't super stress dose her with steroids- because Phil and I both suspected this was one of the main causes of her post sedation rages. It worked. She woke up happy. It could have been that she was sedated so much longer this time, that the meds were able to wear off a little better, but we shall see. Unfortunately this will not be our last set of scans. I am hoping to try it without sedation soon to alleviate some of the levels of nasty meds we keep pumping into her.

She had a full body MRI series with contrast- brain, spine, everything. She then had her routine abdominal CT series.  The doc called Phil last night and reported that he went over the scans with the radiologist and the only oddity that they could find was that she was missing an adrenal gland. Phil and I said the same thing....just one?  She had the right one surgically removed- and the left one had essentially disappeared as of the last scan due to chemo. There was not much to it, but they could see it.  Another one of those double edged swords...if it grows back- she may not have to be on as high doses of maintenance steroids.  But if it grows back, other things might as well.  But that is something we will just wait and see. The good news is that for now, her scans are clean.  We carry on. 

Specifically I focus on preparing for the dozen or so little monkeys who will invade my home Saturday for the big birthday celebration! Someday I will get more pictures downloaded!

It's funny how you think you are getting back to normal and then a few things happen that convince you that you aren't as far along as once thought....and that wasn't too darn far to begin with. 

We had Lily's check up last week. She is doing great and treats these appointments like mega visiting hours at the hospital. The biggest problem was that we had to get her caught up on vaccinations, which meant 5 shots. In addition to her port access and flushing. Even Lily was like"cant they put those(vaccines) in my port?? Poor monkey.  But 5 down 2 to go. The nurse even said- you all are in here often enough, we can do a few at a time for the next couple of visits. I said- um no, we'll knock out as many as humanly possible today because I'm gonna have to drag her in kicking and screaming next time. Lily took the first shot like a champ and then as they get the second shot ready, she says "I think I'm good, we can do that one next time". 

SO we are gearing up for her next round of scans. They will be on the 22nd and this will be the full body MRI. Her sarcoma took a back burner to the adrenal tumor, now it's time to make sure there are no signs of metastasis or recurrence. We don't expect to see anything, but it's stressful until we get the all clear. This is the new normal. Phillip had some headaches last week. Which of course, concerns me. I need to get his eyes checked, but now he has a runny nose- which is actually a relief because I know that they were sinus headaches. One night, I was making dinner after basketball, which is generally when he has the headaches. I think it's the big grassy field....and he quietly says -Mom, you don't think it's a tumor do you? -And that is our new normal. My heart broke into a million little pieces. I let the dinner go and had a chat with him and reminded him that we just scanned his brain and it looked great. He had forgotten, he was relieved.  It's this weird place where I want them to be cautious and understand they have to pay attention to their bodies signals, but I am terrified that they are going to live in fear and when you live in fear, you forget to live.

So I had a girlfriend the other day who was traumatized by her daughter's bad haircut. We've all been there. The bad haircut, not necessarily the trauma resulting from it.  I had mine when I was 5. I wanted the Dorothy Hamill haircut that was all the rage. That is right up until I saw it in the mirror. It felt wrong, it looked wrong and I hated it. I sat and cried on the bathroom counter. After that, a bang trim was a stressful event.  Until I was in high school. I had a bad perm that was the result of my hair being waaay too long and the stylist being waaayy too inexperienced. I ended up with shorter hair and months of intensive conditioning treatments and I learned a valuable lesson. Hair grows back. I watched my dad and brother lose their hair clump by clump going through cancer treatments.  It felt pretty vain to vest all your interests in something like hair. 

I have always cut little phillip's hair at home. I used to cut Phil's brothers hair, and really it's not a big deal. No it doesn't always look professional, but then again- it grows out and you try again in a month. Phillip doesn't so much enjoy being the hair dummy.  This stems from an unfortunate incident when he was 3. I had been halfway through cutting his hair when Kiera came bounding through. I had just taken the #2 guard off and was going to put the #3 guard on for the top. I tended to Kiera and went back to finish his front. Yeah- I took a 1 inch strip of hair off the front, with no guards. He had a bald spot.  Not only that, it clogged the clippers. I dragged him down to my friend's house to borrow her clippers and the resulting "do" was very high and very tight. He looked like a miniature marine. With a bit of a bald patch in front. He was miserable. But guess what? It grew back.  SO I could relate to my friend's experience, but not the 2 days worth of ranting over how her 3 year old's self image was destroyed.  The only way a 3 year old's self image(of which they have very little- I have found.)can be destroyed is if you convince them of it. They have very little theory of relativity. Example #1: 3 year olds believe magic markers to be an acceptable substitute for make-up.  Example #2: If allowed to dress themselves- 3 year olds will pick their 2 favorite pieces which will happen to be a crazy floral print skirt in pink and a polka dot shirt in the hues of green, yellow and blue. Example #3: 3 years is the age generally that kids take the scissors to their own hair resulting in learning one of life's biggest lessons- never cut your own hair. Or let a 3 year old cut hair. Basic stuff.  If a 3 year old thinks she looks ugly because of a haircut, it is because someone reacted to the haircut in such a way to convey this. Of course my biggest disappointment was that all the hair that got chopped off probably could have gone to an organization called Locks of love that makes wigs for kiddos with alopecia.

I was so worried about Lily when her hair fell out in chemo. Her big hair was famous. Yet the people it was hardest on was me and Phil. She was cool with it- after all she and dad had matching haircuts then. She hardly ever wore hats to cover it and wasn't bothered when you touched her noggin. She periodically asks me to cut her hair like dad's again, and I refuse. If for no other reason than 3-4 year olds tend to be impetuous and they tend to make 3 year old decisions. So needless to say, I have a slightly different perspective when someone complains that the bob and bangs weren't what they wanted. In Boulder, every March they do a St. Baldrick's fundraiser to benefit childhood cancer research. People donate what they spend on a haircut(which is a lot of money these days) and the good sports get their head shaved.  My good friends go on over every year- it's a cause near and dear to their hearts as their son had cancer too.  He recently went in for a check up and they found nodules. And part of me knows that one of these times when we go in for scans, it could be us.

So this is what I try to remember: Don't sweat the small stuff.  A bad haircut isn't the end of the world. There are many moms out there watching their kids lose hair clump by clump who would love the luxury of giving their child a haircut versus shaving it off so you don't have to watch it fall out bit by bit. And there are many moms who have lost a child who would give every last inch of their own hair to run their hands through their kiddos hair one more time.

Scans and such.

We had the abdominal ultrasounds today for Phillip, Kiera and Bella. This is part of their "routine" screening now since they have a sibling with an abdominal cancer. I am pleased to report that all parts that should be there are and nothing that shouldn't be. The only point of concern was Phillip's pancreatic duct which is still dilated from the trauma it received 2 years ago. The good news though is that the dilation has decreased some from his last scan. This shouldn't cause any problems but we'll keep an eye on him. We still have to do an ultrasound on Lily's belly before we can get her port out. It was entertaining that at one point all available exam rooms of the ultrasound dept.were occupied by Mallory children.

Since they had to fast for the ultrasound, we all fasted this morning- and we were all rewarded with a big breakfast at Big City Diner.  Bella requested candy for breakfast- I think chocolate chip pancakes with whipped cream counts.

Oh Brother.

It's funny how sometimes unrelated events get tied together and how simple words evoke certain feelings. I had a conversation with a girlfriend this past week about tumors and such. We talked about Lily's size and how when I was pregnant with her, her abdomen was discovered to be unusually large and they monitored us closely for the last couple of months of pregnancy. I have often wondered if the tumor was there then, waiting. We'll never know. That led to a conversation about my dad and brother and the various tumors in my family. I sometimes forget that there are little ears listening and processing.

This weekend we called grandma to chat. Lily waits patiently for her turn(read as: jumping up and down screeching "I wanna talk to gramma next!"). She gets her turn and I always am amazed at what she deems important to tell grandma about. Sometimes she goes around the room describing things, sometimes she tells of atrocities that have happened to her at the hands of her siblings, and sometimes she just sings. Often she walks away and I forget she has the phone until I suddenly remember and hope she hasn't laid the phone down somewhere while she plays. Nope not this time. She opens the conversation with : My mom's brother had a rock in his head! He died. He's dead. 

I look in horror to my angelic child who is so proud of her declaration and is grinning ear to ear. Not only did she use two different tenses of a word correctly, It's like she just figured out a great mystery well before her years and wants everyone to know. I wonder how mom is faring on her end..I don't get the chance to ponder that as Lily announces " My mom's dad had a rock in his head too." She gently pulls the phone away from her ear and places her little hand over it- "Your dad is dead right?"  I nod slightly as she returns to her conversation "Yeah, he's dead too."  She then launches into a discussion about something entirely unrelated and gives each of her siblings a turn talking. By the time I get to talk with my mom, I have forgotten the incident although later it cause me much pontification. 

It finally dawns on me, one of Phil's brothers' birthday was this past weekend. Last week we were talking about it in the car one day ( we talked about making cards- it never did happen) and Lil Phillip asked which uncle. I told him and he said- Is he a pilot?  Nope- he's gonna be a brain surgeon.  Phillip pondered that for a moment and looked sad.  "It would have been nice if he would have been a surgeon when your dad and brother had their tumors".  I am always amazed at the combined simplicity and complexity of children's thoughts. We had a pretty indepth discussion on tumors and surgery and the trickiness of brain tumors. Lily looked puzzled and says- " Uncle Bob had a rock in his head?"  Yep.  "But he held me when I was a baby. Did he have the rock after that? "  No honey, he had the rock when I was still a kid, he died before you or Phillip were born. "So he's dead?"  Yes. "And your dad had a rock too?" Yes. She ponders. "Uncle Bob held me. He did."  She has that look of determination that often ends in a fit.

I don't argue with her. I've learned that there is no sense in it when she is adamant. I have also learned that she is often right, I just don't understand what she is trying to tell me.  I understand what she is saying, but I interpret it with years of experience. The problem is that she is saying it through a 4 year old mouth- there is no veil of political correctness. There is no concern for how uttering certain words like death may cause twinges of emotion. Because in a 4 year old mind- death is the equivalent of sleeping. They don't have permanence. Maybe her thought processes aren't so random after all, maybe they are very purposeful. Sometimes it's not how we see things, but more about how things are seen through other people's eyes. And sometimes we learn that sometimes when you see things as they are, it's really not so complicated at all.

Lost somewhere between wanting more and just going with the flow is where I linger. The battles have internalized. I've been trying to sort things out for months. Sort the laundry, Sort out homework, sort out routine and sort out feelings. I should be ecstatic. Life right now is exponentially less complicated than it was a year ago, yet my emotions are more so. I go from embracing the purity of the moment to trying to plan for the future to agonizing over the what ifs, to just getting through the day, to realizing another year has passed.

We found our new routine. I still forget Lily's meds from time to time and feel horribly guilty when a nasty tantrum brings it to my attention. I forget to put in her hearing aids before we leave the house and usually curse myself as I have to repeat almost everything 3 times for her. I forget what day it is. I remember when I could recall key pieces of information at will- now I fumble over my own children's names.  Other moms reassure me this is normal and to just be glad we don't have pets or I'd be calling the kids by their names too. I think we should get a pet, and I will name it Dammit.  Come here dammit. Dammit, Stop chewing on that. Better yet, I could legally change all their names to Dammit. George Foreman was onto something there- and I don't just mean the brilliance of indoor grilling. 

I spent the past few months trying to find balance where I don't think there is any. I try to write and it goes round and round. I try to clear my head, but the haze settles back in.  Even though I don't want last year to define us as a family, it has left more than a few permanent marks. I feel like I have been catapulted into a mid life crisis. I don't even believe in mid life crises. I used to think Mid life crises are for those who don't know what they want. I just realized they are for those who know what they want but are feeling the pressure of mortality to achieve them.  It's when the weight of reality starts to taint your dreams. It's the weight of balancing what's important and what's necessary. The hope of doing something more that is beyond yourself merged with the realization that there aren't enough hours to accomplish the basics.

There aren't words to describe the conflict of emotions that surround recovery. I know it's normal. This is the processing time. I want to channel the experience into something positive- but wonder if there is a way to do it without living in it. I love how music helps sort this out. I was trying to come up with an upbeat playlist to improve both mood and exercise time which actually feed into each other. I recently downloaded a new Alicia Keys song that Phil and I both enjoy very much. I always marvel at how he can listen to a song 50 times and only hear the beats or the riff.  I cannot listen to this song without getting chills. I don't know if she captures the feeling or if the feeling is captured in me. For me it embodies the moment you realize it's gonna be okay. That is not to say the pain is over, but you realize it is what it is and the only way to go from there is up.  SO as I am compiling my playlist of upbeat grooves- Phil says _ Hey! How about that new Alicia Keys one?  I laugh and once again he looks at me like I have lost it. What? It has a great beat. He is unapologetic. I know we have listened to the song in it's entirety no less than 5 times together. Have you ever actually listened to the words?  No, again he says- it has a great beat. Yes, but the title is -Try sleeping with a broken heart? Oh, maybe not. But it got me thinking. It's a song that makes me feel. Something that a lot of times I had to push to the back to take care of business last year- so for the past few walks- I listened to it and felt. I highly reccommend it. It captures a certain element of loss. Sometime you lose time, sometimes love, sometimes a friend, sometimes innocence- but you find a way to make it. And in the process you gain something invaluable. Sometimes you gotta do that before you can carry on, Dammit.

Calendar Girl

Here she is Ladies and Gentlemen....MISS JANUARY!

                    She even signed a copy for us!

A few months ago, Lily was asked to take part in a photo shoot for a fundraiser calender for some of our favorite furry friends at the hospital. The Therapy Pets always cheered Lily up during treatment and we were thrilled to help them out. Proceeds go towards special vests for Dogs on Duty in Iraq!

What a Difference a Year Makes

I just read through a few entries to find a story in the blog that I never wrote. I guess it wasn't time. A few weeks ago I got a call from the clinic. They wanted to know if it would be OK to nominate Lily to light the hospital Christmas Tree. Of course last year's tree lighting popped into mind because it was Phil's birthday, so I let him go home for the night and Lily and I were hanging out. The nurses helped me get Lily bundled up in her robe, put her mask in place because her counts were low and gather all associated nee nees, Poohs and necessary items for the trip down stairs to watch them light the tree. We got out there at dusk. We found a seat on the grass away from people. She couldn't get comfortable. The band was playing but the ceremony hadn't started. Finally she looked at me with her sick little eyes and asked "can we go back upstairs now?" So we went back upstairs and she fell asleep. Later that night she woke up and I carried her across the hall to look out the playroom window at all the lights below.

This year she gets to light the Christmas tree and she's very excited. It's a good reminder of no matter how tough things are you will get through. Last year we were going from hour to hour. I don't want to delve into those feelings and those memories, but they have shaped who we are.  I am truly Thankful for all of those who have helped us through this year and have done so many things to make a difference for us.

If you are out and about on Monday November 30, the Tripler Tree Lighting Ceremony will be by the flag, Oceanside at 1730 hrs. Anyone is welcome to join us as Lily helps usher in the holiday season at Tripler.

Got Panda?

The whole "preventative screening" term is a bit of a misnomer. I'm pretty sure these tests don't prevent anything except a good night's sleep or two. "Early screening" definitely applies as Bella and I had to be to Spa Tripler by 0630 on Thursday.  Phil got the big kids off to school and brought Lily in after that. On the schedule: Lily and Bella's MRIs.  Bella had an MRI of her brain and Lily had her routine followup scans.  Both required sedation as anyone who has preschoolers knows- they can't sit still for 2 seconds much less 45 minutes. Bella did great, although I could tell she was quite uncomfortable with being the "patient". We had their pre-sedation physicals on Tuesday and while Lily was being weighed and measured - Bella heard the nurse say- Oh we get to see Isabella today too!  As I turned to smile at Bella, I noticed that she was quietly slinking out the hall and climbed into the stroller. She didn't seem too keen on being included in this "sospital" stuff.  She was pretty lightweight when it came to sedation too.

Lily has her port, so that access procedure is routine. The nurse practitioner was telling me they would like to dart Bella. She seemed to be taken aback as I laughed out loud thinking of the many times Phil joked how he wished he could toss a tranquilizer dart at the kiddos...later when I relayed that to him that they actually "darted her" he asked- what did she try and run away?  At first I balked at the premise of sticking her twice when once would do it, but the dart is quick and to the point, where as the IV takes precision to get in and then however long to hook the meds up.  So after about a minute, Bella hands me the toy she was playing with and goes completely limp against my chest.  While she was in her MRI, I ran over to the clinic where Lily was getting accessed with both Child Life Specialists and a handful of her fan club.  Then it was back to the MRI for me to wait for Bella and up to sedation for Phil and Lily. We have since agreed along with Child Life Services that Valium should be standard issue for children's sedations. They were just getting ready to leave for her scans after Bella started waking up so we high-fived and gave the other kids kisses and got back to business.

The problem with mind altering drugs is that they, well, alter your mind. Whereas an adult might make infantile decisions, kids make neophyte decisions. Bella can't yet fully command her eyes to open, yet is demanding breakfast. I had promised when the MRI was over we would get breakfast- she wanted me to make good on that. Fortunately she settled for a pink popsicle. When she finished that, she started fine tuning her muscle control which meant she tried to sit up, but while she was focused on that, she forgot to hold her head up and it would pull her back down.  We did this catch and release dance for about an hour when she finally started being able to talk coherently again.  At this point she wanted to play with bubbles and well she would blow and although I saw no bubbles, she apparently did and promptly yelled at me for not popping them. After that, I got to look like the altered one as I popped imaginary bubbles.  She finally seemed to be sitting up and in control, so we ventured to the playroom. She would sit and play and then randomly fall over. I would have video taped it with my phone but I was too busy catching her.  When Phil and Lily returned from her scans we hugged them and came home to be here when the other kids got home from school.

Lily woke up screaming as usual and ordered a purple popsicle. There were no more purple popsicles so she chucked the red one across the room. She then proceeded to yell for an hour and 20 minutes until it was time to leave. By the time they got to the car, it was well after lunch and Phil asked her what she wanted for lunch- how bout panda? in her most innocent, I didn't just chuck a flavored icicle at your head voice. So of course she got her Panda Express. Girlfriend can pound some chow mein and orange chicken after a sedation. 

Phil and Lily actually beat Phillip and Kiera home. Both kids walk in and immediately balk- why don't WE get Panda? Well- when you have YOUR scans, you can get Panda after. BUT we ARE having our scans- tomorrow. Yep. So we get Panda after? Sure. OK.

We spent quite some time preparing Kiera for her MRI. She was mostly worried about the noise. And the clausterphobia. We watched videos and listened to the sounds it makes on you tube.  It didn't seem to help. The next thing I know- Lily has Bella laying under the chair at the desk- she's tied a rope around the chair and is humming loudly- just like the MRI video.  Whatcha doin?  I ask.  -Takin pictures of Bella's belly.

So this morning we didn't have to arrive so early since Phillip and Kiera were going to do their scans without sedation.  We met with Miss Julie who kept one kid occupied while the other was being scanned as well as providing pre and post scanning debriefing for all parties.  Phillip went first and we were delighted to find that Tripler actually has the movie goggles . That made all the difference. Phillip was like a statue- much like at home when placed in front of television. When he was done- he bounced right off the table- of course that may have been because he had forgotten to go to the bathroom before the scan.   As he was returning from the loo, Kiera had just walked into the room. She took one look at the MRI machine, spun around and yelled " I am NOT doing this! There has GOT to be something else!" And she makes a bee line for the door. Fortunately she bounces right into Phillip who grabs her and holds her. We explain to her how it all works and that she gets to watch a movie. And-Phillip tells her- after you're done, we can go get Panda. She looks like she would rather shoot and stuff a panda right now over this, but after a few minutes she climbs up onto the table and I swear I can see her little heart beating right through her shirt. Once we get the goggles on, she's good to go and does fabulous.  And of course as she hops off the machine the first thing she says is " Can we go get Panda now?"

Am I 4 or am I 8?

Silly question, most would think.  But the ironic thing is that she is a 4 year old in the body of an 8 year old with the experiences of an adult- so lets face it we have no idea how old you are.  I don't know when she got on the kick, but she asks me at least once a day- am I 4 or am I 8?  We tell her she's 4. I mean chronologically, she is 4. Sometimes wise beyond her quaternary years,  she says so many things that make you go hmmmm.  Sometimes I feel like it's the calm before the storm, sometimes I snuggle in the warmth of the ordinary marvels of a child.

Lily has also discovered there are sometimes medicines and 'for ever and ever' medicines. We have been battling an atrocious cough for weeks now. I gave up on cough medicine over a week ago. No sense in taking stuff if it doesn't do anything. One morning as I was doling out the hydrocortisone and fludrocortisone, she asks- why do I have to take this- I'm not sick anymore- as she wipes the thick stream of snot across her cheek.  I reminded her she had a rock in her belly and when they took out the rock, they took out her adrenal gland and now the medicine keeps her healthy. A bit too much information? Maybe. But it's important for her to have because she is always going to have to take meds and more importantly let us know if she is feeling sick so we can up her dose.   So, she looks at me square in the eye and asks- is this a little while medicine or for ever and ever medicine? For ever and ever.  Oh, she pauses, Ok. She hops down off the chair and goes about her business.

The next morning I am languishing in the comfort of my bed(read as: coughing so hard I am laying in the fetal position as to a. not wet myself and b. keep my insides from ejecting themselves.) Phil lets me know he is leaving for work and gave Lily her meds. Apparently they also had a long talk about for ever and ever meds.  I guess it's sinking in. Then this morning her Ariel doll had to undergo a series of scans and we regret to inform you that Ariel has a frog in her belly and a rock in her leg- but Lily assures me she will have a cut in her belly and her leg but she will get better.  Phil and I look at each other and shrug. She's working through it. Like the rest of us, it happens in its own time. She also found a card she got from her Grandma after chemo was done. It's one of those musical ones( which she plays over and over and over until they break) this one is 'Celebration' by Kool and the Gang. I hear her in the other room.  She comes running in as I am writing this. Her new favorite outfit is a pair of khaki shorts and the 'No owies" shirt with her name on it that my cousin Shannon made her.  I just like that she is wearing clothes- a fact that has been duly noted in quantity of laundry. The khakis are around her ankles, she's got the card held open in one hand and is holding the bottom of her shirt in her teeth while pointing at her underwear. I wonder if she's doing a rather poor imitation of 70's dancing, but what's with the pants?  She tries to talk and the shirt falls out of her mouth.  She stuffs it back in and is mumbling through. It sounds like she's saying "Cheese Mash"  After a few minutes of seventies stripper charades, I get what she is miming. She is wearing Dora Birthday underpants. Dora and Boots have party hats on and are holding balloons. The song is "celebration"- the card matches her underpants- "These Match".  Okay maybe she is pretty 4 after all.