The worms crawl in, the worms crawl out, the worms play penochle.....

Everything we need to know can be found in nursery rhymes. A week ago, after checking a few concerned emails- it occurred to me I never posted on Lily's health status. Insert hysterical laughter. Make that maniacal. Nope scratch that- sleep deprivation is messing with my mind. And don't scratch that- go wash your hands.

Lily's scans were fine. Nothing to report, everything consistent. The spot matches a bug bite and they will check it out again next round. I called last week to double check because Lily has been experiencing some itchiness and some other symptoms and I wanted to rule out major issues before we try and tackle little ones.
***Warning***Graphic stuff ahead. Not for the squeamish or OCD.


SO the itchiness comes and goes. I thought it was yeast. It's not yeast. The itchiness seems to always be the worst in the evening. Bella's been waking up too. I thought it was because Phil is gone. Something keeps waking her up consistently. Oh nooooo. This whole act is familiar. Somewhere around the inception of this blog we had an episode with worms. No, no, no, no no. Flash back to Port a Potty incident at air show. Somebody put a fork in me. Now. Please. My bum starts itching just thinking about it. I grab a flashlight and sneak up to the girls' bedroom late Friday night. When I said parenting was messy- did I mention the whole bit about pin worms? No need to teach anything else in sex ed- just provide all information about these bad boys and that they Looooooooove preschoolers and Kindergarteners because this group of thumbsucking, orally fixated little germ factories also suck at washing their hands properly. Be sure to highlight the part about how they like to leave the warm cozy nest of the human's small intestine at night to lay their eggs around Uranus. So the poor little thumbsucker itches away in their sleep then sticks their hand back up in their mouth. Life cycle propagated. 

Sometimes if you are real quiet , you can sneak up on them commando style. And you will actually be surprised that this particular set of night ops doesn't even wake the natives. It's a bit of a balancing act, holding the flashlight in the crook of your neck to get proper separation.  Quite comical- one of those times having a spouse around would be beneficial. And I spot the lil bugger running for the hills. Oh crap I'm gonna be sick. I might take the time to be sick if I run out of bleach before morning. I check Bella too- that's another affirmative. I don't know whether to scream or cry. Somehow this is a commentary on my parenting, my hygiene, and everything about me. I could give a care less that this is described as the most common parasite in the world and estimates go as high as 75% of children having them. I don't care that after our first bout of them( when I vowed to never let a handwashing go unnoticed) that one of my good friends - who also happens to be one of the cleanest humans ever- told me she knew all about them and how to look for them. what?  They are completely disgusting, but pretty common I was told. Multiple websites describe them as a nuisance and that the most damage occurs in the mind of the parent. You can say that again. I have distinct memories as a child, peering into my best friend's poo to get a glimpse of the souveneir she brought home from the zoo. There is something completely and absolutely unnerving about something living in your rear. It's wrong. It's even more unnerving to have physical proof that these little buggers are alive and well in my children. I debate just up and moving. I think buying all new personal effects is probably easier than dealing with the trauma of fighting an enemy you can't see- those blasted little eggs.  My bum itches just thinking about it.

I spend the entire night wiping down every surface in the house with bleach or lysol. I am dizzy as the 3rd bottle of lysol runs out. I start laundry in the hottest temperature possible and switch the dryer heat to highest. I know that the only thing known to kill the eggs are UV and heat. I throw stuffed animals and area rugs outside.  Everytime I pass a sink, I scrub my hands. They are starting to burn. By 2 am I am literally running on fumes. I decide to try and get a couple hours of sleep. I know we will be up well before the clinic opens at 6am. At 4 a car alarm goes off- I vaguely recollect thinking it sounded like my car and hope the thieves get their come uppance with a nice case of thread worms.  I don't remember this thought until morning as I am loading the girls into the car- which was still there. It then occurs to me that I have a whole nother realm to disinfect- the car. Where are thieves when you need them?

I was up at 5 stripping my bed and showering. The girls peek in to see where we are going- I quickly steal the sheets off their beds. I hosed their room down with lysol the night before and wiped surfaces- but now that I pulled the sheets up- I feel the need to do it again. I know the lysol won't kill the eggs- but it makes me feel like I am doing something. Like scrubbing every reachable surface in a house isn't considered "doing" something. I am not good  with sleep deprivation or parasites as it turns out. It is late morning where my husband lives and I call to tell him what's up. He is relieved. He thought something was wrong. Oh something is wrong- very very wrong. He backtracks and explains this is easy- it's curable. Easy? Easy!!??? My back is spasming, my stomach is in knots. I have a cough- which I'm sure is from huffing lysol or from parasites who are too stupid to find their way to my a@! and got lost in my lungs. I wonder how 1 person can be expected to launder 5 sets of bedding plus towels, clothes, blankets, etc- daily as well as continuously monitor 4 sets of bums and hands while decontaminating every surface they touch for the next week in addition to all my other daily jobs. Mind you each time they go to school - I have no control over where they stick their hands. I'll trade you your 2 social dinners and afternoons of football for my weekend.

We get to the clinic behind a young man who apparently fell and split his chin open. I wait for the desk clerk to act disgusted as I tell him why we are there. He nicely informs me that he will check everyone in so everyone can be treated. I wish I didn't know the procedure to this. Not how I wanted to spend my Saturday. The doc is nice and despite his reassurances that I am not a failure at parenting, hygiene, and life- I feel disgusting. He continues to tell me that this really is common. Especially in the girls' age group. We probably won't need a second dose- but check in a week or 2 for evidence of new hatchlings. Awesome.

I stop by walmart to get industrial sizes of bleach, paper towels, soap, disinfectants and of course more lysol.  I brief the children on the operating procedures for the next week- at a minimum. I hand out meds. We shower in the morning. This washes away any eggs laid at night. Towels go directly in the hamper. ALL dirty clothes are put in hampers. Undressing only happens in the bathrooms. Any time you itch anything- wash your hands. Every time you go to the bathroom- wash your hands. Before you eat- wash your hands. When in doubt- wash your hands. Only use paper towels for now. Notify me immediately after BM's so that I can disinfect the bathroom. Sheets will be washed daily- do not fluff them. No one wears skirts. Or night gowns. Shorts and underwear are worn at all times. Bella makes a point by immediately pulling her shirt off. She smiles a goofy smile as I glare down upon her. I know she is suspect #1.  I know she will be my biggest challenge in this ordeal. I begin round 2 of disinfecting and continue to tackle the mountain of laundry. I don't even want to think about our water or electric bill this month. This is a recycling/conservation nightmare.  I read about homeopathic cures. Apparently garlic works- I put 5 cloves in dinner. Unfortunately it is supposed to be used as a suppository. Um no. I'd love to hear Lily explaining THAT one to her teacher. A night in police custody is kinda sounding like a vacation right now. I'll stick with the traditional methods. The girls are outside roasting marshmallows on sticks over an invisible campfire they set up on my living room rug. I want to throw buckets of bleach at them, but realize that would be wrong. It would totally stain the rug.

Love Bites

I'd have to say I've been dreading the scans for awhile. Well over a month. Probably close to 3 months. It was right after we finished her last scan, of which I thought we wouldn't have to do again for 6 months- and her doc kindly corrected my thinking by saying- oh no no no- we need to scan every 3 months for a full year following chemo. yaaaaayyyy.  Oh well- it's just another year. It's really only 4 scans. And 4 sedations. And 4 days spent at the hospital. Well 8 if you count having to come in for the pre-sedation physical and the follow up. But it will get better and that was my line of thinking right up until I saw the radiologist with 2 students in tow- buzz on into the MRI suite. Crap.

It was an early morning, 0530 out the door to get to the hospital. As much as my stomach disagrees with the stress, I realize that in a few hours it will be over.  Lily talks nonstop in the car about this and that- she is either as nervous as I am or sensing my nerves. She's got her grandfather's personality- she talks a mile a minute when she's nervous. I am just thinking how much I miss him when traffic stops. I sigh and survey the cars around me. To the left, the windows are too dark to see, I assume they are picking their nose. To the right is a woman talking on the phone. I metally lecture her on the safety issues.  Front right is a truck with something hanging out the cab. I am grateful it isn't a person like I often see here. I recognize the shape. It's a yellow floor buffer. I smile- it's a sign. I would often accompany my dad to work on Saturdays in Toledo and then on business calls around Colorado, I knew the machine.  It's not something you usually see in the back of a truck and for some reason here it was. Call it coincidence, I feel the warmth almost like a hug. Sometimes it's a rainbow, sometimes a butterfly- sometimes an industrial floor care machine that reminds you that there's something greater to the plan and to ride it out.

One of the enormous benefits to arriving at the hospital at this hour is the abundance of parking. Three days ago I wasted 40 minutes of my life waiting for parking. I thought about calculating how much time I've spent waiting for a parking spot at the hospital, but realized it would be too depressing, so I didn't. I just try to leave extra time and plan on visiting with our nurse friends if by some rare grace we find a spot in under 30 minutes.  I could waste more time being angry about it, or I could adjust and find a way to make it work. I spent the time filling out a comment card online about the insufficiency of parking and for question 7. No. No it definitely NOT meet my needs in a timely fashion.

I get Lily checked in and it occurs to her that she has to get a poke and she no longer has a port. She was familiar with that routine, this is new- different. She does not do well with different. I start preparing her for how it will go down, incorporating some of the techniques I saw Miss Julie use time and time again in our early days of chemo. I don't promise that it won't hurt, I know it probably will- even with the numbing cream. I can promise that it will be quick. The anesthesiologist asks if I would prefer to dart her. No, but I would like to take some of those home with me. This is something she is going to have to do, the less additional chemicals we pump into her and the quicker she learns it's part of her norm, the better. She asks if it would help to call the child life specialist down, of course. Miss Wendy is paged.  We play in the playroom while the numbing cream works. Pretty soon they are calling us over to put the IV in. She is chanting - I don't want to do this, I don't want to do this.  The nurse is trying to distract her and they are looking at a picture she drew in the playroom. She sees the needle come out and her eyes get big, as if on cue- Miss Wendy walks in. Lily is distracted by the greeting and her nurse takes the opportunity to poke her. She yells at him and 2 little tears escape. I ask if it hurts right now and she pauses. NO, but it really really really hurt when he poked me. I know- but it doesn't hurt now, it was a quick hurt- now you will be ok.  She nods.  Within minutes she is out cold and we walk down to radiology.  I give the anesthesiologist my number and ask the MRI tech which scans they are doing and how long to expect. They are doing full body , brain and abdomen... it's gonna be 2 hours. We just did brain. I wonder why they are repeating it this time. Well, she's sedated anyhow, better safe than sorry. The anesthesiologist asks if I had breakfast. Ah, my cue to go.

This is the worst part. Knowing that in the next 2 hours we will be relieved or crushed. I need to get hearing aid batteries and a flu shot. No time like the present. I go upstairs, grab the batteries and wander over to immunizations. It's a mass vaccination day. There's a line. Just my luck. Oh well, at least they will have plenty of vaccine and it's 0830 so they won't be rationing yet. Or so I think. Two doctors ahead of me are discussing the benefits of shot v mist. Everyone I've talked to says they feel crappy after the mist. I generally don't like the flu vaccine anyhow, but when Lily was in treatment- her nurse pretty much told me I needed it and went and got it for me. That kinda changed my view. I figure with Phil being gone- I should try and avoid the flu if possible. The doctors are doing the usual bantering pros and cons of each. I have already decided on the shot. The tech informs me that unless someone in my house is immunocompromised- um duh- I have to get the mist. I knew I should have checked those boxes dishonestly. I explain our situation and they say unless she had a bone marrow translpant or organ transplant I am stuck with the mist. Really? Yeah you can blow it out right away if you want. Just a little will do the trick. Seriously? Does anyone else see how ridiculous this is? Yes, but we have a shortage of shots. You are having a mass innoculation and didn't plan on having enough supply? She starts in on how vaccinations are made- I put my hand up- spare me. Mist is better than flu- I guess. If I could get a damn signal I would be filling out a customer satisfaction survey right now. Looking back I should have demanded an ice card and pen and filled it out right there with mist dripping out my nose. Part of me realized it was the stress of the day tempering my attitude.  The tech squirts the mist in my nose and I feel it running right back out. Did it get into your throat? Um yeah, sure. I can give you more. Um No thanks. I wipe away the trickle and she goes for the other nostril- I don't even bother tilting my head.  I leave and head right for the bathroom and blow the offending nonsense out. I wonder at the efficacy of any of this.

By the time I get to the shoppette I feel dizzy, flush and completely woozy. Apparently a little totally does the trick. Maybe I'm just hungry. I grab a book, fruit plate, tea with vitamins and a bottle of multi vites just for good measure. I need air- I pay and go outside. The sun feels better. I chug two vitamins with the tea. Now I won't know if the stomach upset is flu, vitamins or stress. I look at the time- all of my errands took less than a half an hour. An hour an a half to kill. I don't like being far from the scan so I absorb a little vitamin D and go back to the bowels of the pink castle of despair.  I read for awhile. Watch 4 other MRI patients come and go. I feel like one of those movies that they time lapse waiting with people traversing by.  Two guys talk football and blowing various joints out and I glance at the tv. No wonder they are not watching it- it's an infomercial on the ugliest looking full coverage bra I have ever seen. I go back to the book. Then a familiar face rushes through with 2 students in tow. Dr. Rooks. The pediatric radiologist. She is a wonderfully nice, smart woman- my experiences with her have been bad. From bad pancreas to adrenal tumors- if you see her- it's not a good omen. Maybe she's just reviewing the scan before they call it quits- they do that- it's also a good teaching opportunity and she has two students in tow. But tumors are also good teaching opportunities. Damn. Damn. Damn Damn. I try to read but realize I am just looking at the words while I wonder the best way to lie to my husband that everything is fine. Since I can't lie to him, I am actually just trying to lie to myself for awhile. I feel like my bad feeling is justified, but I wanted to be wrong. I am a worry wort. The anesthesiologist pops her perky red noggin through the window- we are going to rescan her leg- it'll be a bit longer. I look at the time- it has been 2 and a half hours already. Here we go.

A little while later they roll the gurney out of the room and we are off to CT.  We pass a gurney with a woman who is unconscious, her husband obviously worried.  We exchange sympathetic smiles. I settle into an unoccupied row of seats and I watch two kids color quietly without supervision. I am impressed by their behavior. My kids would be having a WWF event between the rows of seats or trying to turn it into a track and field event.  Their dad returns, it's the man I passed earlier. Sometimes even kids know when something is wrong and just shut up and color.  I say a silent prayer for them and Lily is done. In the elevator I pick their brains. I know they know what's going on. I am told there was a spot in question on her leg, it probably is just a bruise. We look at her leg. There is a small bug bite she scratched open. surely the MRI wouldn't pick it up? They are very sensitive she says. 

It's almost noon. Lily is snoring away. I would rather her sleep for a lil while after sedation than cry, but I feel gross. Darn Flu mist. If I get sick I'm dropping my kids off with that tech in immunizations and finding the nearest treatment room to occupy.  Lily starts to cry. She has to pee. I lift the covers, it appears that she already has. We get a bed pan and she is screaming how big girls go on the toilet. She lapses in an out of consciousness and fotunately her body takes over when she is asleep- unfortunately her brain doesn't get the memo and she screams everytime she wakes up that she will only go on the toilet. I have a bed pan that proves otherwise- but I know that under NO circumstances will I win this arguement. I let her cry and soothe her the best I can. This goes on for an hour. She buries her head under the sheet and pushes Pooh away. It's not Pooh's first scan, his feeling aren't hurt.


 Finally she has a popsicle and we convince her she can stand so we can go home. The nurse brings her a pair of hospital pants. I laugh. She begins telling him all about how she will NOT wear those pants. She decides she still has to go to the bathroom. We take her, the nurse waits patiently outside while Lily berates me on multiple levels. She does not have to pee. We stay there for a half an hour. My head is throbbing and my throat hurts. I cough and wash my hands for the 85th time this trip. She finally decides she is done trying. I hand her toilet paper which she throws at me and yells that she DID NOT pee. Awesome. So I look at her in her little green eyes and tell her I don't care how brave she is and what medicines she's on and how icky she feels there is no excuse for being rude. She hugs my leg and says sorry mommy, I just want to go home. Then let's go. The nurse has the paperwork ready to sign and says to follow up with her doctor. You betcha. We are out.

We miss her doctor by five minutes. Which buys us a trip back in on Friday. I am almost grateful for the flu mist because I feel so icky thursday night , the only option is to sleep. I take her in Friday and her doctor examines her. He starts grinning and tells me this was exactly what he was hoping to see- the bug bite is right where the spot on the scan was. The redness matches the margins. We'll check it again on her next scan to be careful, but he isn't worried. I wish I could say the same. I ask him if scans can be THAT sensitive? He says yes, and sometimes thats the problem. But try not to worry.  He is a dad so he knows that's easier said than done. We sign up for the Halloween party and say our goodbyes.  I text Phil to let him know the good news. I try to enjoy the good news and not start to worry about the next round.

Adrenal Insufficiency in Kids

Lily has Adrenal Insufficiency. Fancy words for her adrenal glands don't work right. Some kids are born with the condition. Two years ago I was hoping for that diagnosis. Congenital Adrenal Hyperplasia, Addison's, Cushing's Syndrome-anything but a tumor. She now has no tumor, but no adrenal glands either. One was taken out, one was killed off by mitotane- a nasty little insecticide that they found helped dogs with adrenal problems- which for some reason is fairly common. Give it to kids, call it chemotherapy- but when it comes right down to it- toxic is toxic. When I started researching mitotane- I found all kinds of veterinary info on it.

We weren't prepared for the adrenal crises. Nights of throwing up, fevers, stomach pains. During chemo- you just attribute it to the nasty toxic side effects of the drugs. The doctors were very upfront with us- These drugs will cause nasty side effects- at times it will seem like we are doing more harm than good- but this is the best way available right now. The side effects were almost immediate. But we had no idea if it was the chem or the lack of adrenal gland- only one was taken out surgically- so looking back- the sicker she got , the better evidence of the mitotane doing it's job.

We weren't thinking ahead to what this meant for the future, because we just wanted Lily to have a future. Those are the tough decisions you make as a parent. Sometimes you don't understand other parent's decisions- but if you are a parent- you definitely understand how and why they got there. Your heart plays funny tricks on your mind. Watching your baby struggle is painful, even when your mind tells you it is necessary. Yesterday I took Lily in for her presedation physical and since we were there- stopped in to get Bella a flu shot. The older kids will get them at school. A mother with a 4 month old was in tears because her child just had to have immunizations and he cried. Welcome to the world. There is pain- and a lot of times the pain is necessary to prevent something worse. Until there's a better way- that's how it is. I wanted to tell her to suck it up, but I was actually glad she was there getting him vaccinated. Too many parents hide behind fear or religion to escape vaccines and epidemics are beginning again. I'm not saying there aren't government conspiracies and yeah they probably are injecting our children with mind controlling chemicals so that they can form them into an elite army later- I'm ok with that - I just wish they would give me the code so I can practice on them. I kid.

There are a couple of options for meds that Lily can take. Hydrocortisone is the most natural replacement- it performs the catch all functions of they myriad of steroid hormones that the adrenal gland. She also take Fludrocortisone which helps keep all the minerals in balance. She takes both in the morning and a 3/4 dose Hydrocortisone in the afternoon. If she gets sick- vomiting, fever- icky stuff- or hurt badly she needs extra cortisone because the adrenals would release extra cortisol. That is where the training comes in- I gotta know when this would be needed and respond accordingly.  Now steroids have been in the news on and off for their performance enhancing capapbilities. I ahve seen this. Lily is a little hulk. She is big, she is sturdy and man does she dance angry. Now that I think about it- the Hulk is a perfect metaphor for how she acts. She can be sweet and caring and bubbly but can change on a dime. Then the roid rage sets in- the hitting, the tantrums. Not so appealing in an oversized 5 year old. We are learning the ins and outs of things. Mostly I am learning it's an imprecise science. The human body is a pretty amazing thing- it saddens me how badly some people treat it.

I am really grateful for the support groups I have found. MDJunction is a site that has tons of different groups for any condition you ever could have. It is run thread style so I have a very tough time finding specific information unless the discussion is titled that- and it is people's experiences which you ahve no references or background on. There is also a newly formed group for parents like me on Facebook.  Parents of Adrenal Insufficient Kids. It's amazing how much better a person feels when you hear- I have experienced the same thing- you are not alone. No you are not going crazy- we went through that.

It's a cozy little group. I love that when I post a question, I get responses with in the day. If you know someone who may have a child with this rare condition- direct them our way. Lily presented with pre-pubertal changes but that was due to the tumor-  general Addison's(adrenal insufficiency) is characterized by general fatigue, muscle weakness, loss of appetite and weight loss. There can also be a characteristic darkening of the skin. It's not a common disease, but can be fatal if left untreated. Seems like your body really needs that crazy gland on top of your kidney. With kids and their ever changing chemistry and bodies- and sickenesses there are many unique challenges we face.

http://www.facebook.com/home.php?#!/group.php?gid=108310522525740

Giving Kids the World

It's been a year since we had our Make a Wish trip to Disney. We spent an amazing week at a fun filled village called Give Kids the World. The village was the life long project of Henri Landwirth, a hotelier who heard the story of a young girl named Amy who was dying of Leukemia. Her dying wish was to go to Disney World, yet there were problems lining up accomodations and she passed away before an opening came up. Henri decided he would ensure that this would not happen again, that no other child's dying wish would be left unfulfilled. After all, Henri himself had lost his own childhood to the concentration camps. It began as a building and now is a Village of quaint fairytale houses, A gingerbread house, a theatre, an arcade and my kids' favorite- the carousel next to the Castle of Wishes.

It has been 2 years since we started this journey.  It's been almost 2 years exactly when I got the news that changed our lives forever. I remember when Lily was nominated for a Make A Wish trip. I spent an afternoon in her hospital room hiding tears because it's never a good sign when your child is granted a dying wish. The Make A Wish people were kind enough to rearrange my thinking- they are no longer considered dying wishes- they are incentives, silver linings for amazing lil people who have to face something average kids don't.  I remember having a specific conversation with Lily's doctor and then our good friend(and child life specialist) about timing the trip. I didn't want to take her when she was sick. Could we wait until she finished treatment and was feeling better. They both were reeling from 2 recent deaths- one child passed before she was well enough to have her wish, they other's wish completed only weeks before she passed. Both said the same thing, Don't wait. I had read up on the very few cases like Lily's, the signs weren't good. Usually there is recurrence between 2-5 years. We're there. This week we have her scans. I cross my fingers and hope. Phil is again gone, a bad omen according to our track record. But I take it a day at a time and tentatively make plans. Plans for conferences, plans for holidays, and each time I write something on the calendar I pray it's not something I'm going to have to rearrange.

Lily's surgeon again invited me to speak with some new residents a couple weeks ago. I hadn't made the early morning commute to the hospital in many months, and I was grateful. Grateful for where we are now and the good care she has. I am grateful for the family and friends who helped us through one of the worst times a parent can have and grateful for the organizations who helped us navigate the tricky waters of the disease. As we wrapped up, Lily's surgeon and I chatted about her and how she is doing. I have to say I dread each scan. She mentioned she is so happy to hear that Lily is good, that she is surprised Lily is doing so well despite such an advanced stage tumor. I know what she means, but it still scares me to hear. Because in my world- science speaks. Scientifically speaking according to the statistics- Lily might not be here in 5 years. But she could be in the  small % that is. And that is what we are working towards. So every few months I encourage the kids to give back. We had our lemonade stand to support cancer research, Last week we volunteered at a Make A Wish fundraiser at Cold Stone and just this week I signed Lily up to be a virtual runner in A 5K Fun Run at Give Kids the World. I have also encouraged my husband to drive the 8 hours over there and run his hiney off- but the Air Force might have other plans so we'll just wait and see.  Phillip and Kiera have agreed to give their allowance for the month of October(which is pretty convenient for me- I generally forget to give it to them.)

This week we learned that one of Phil's good friend's from the Academy is battling cancer and cancer has returned to haunt a sweet 16 year old who has been battling it for over half her life. Once touched by cancer, it is part of you. It is a shadow that threatens to overtake you. You turn towards the sun and sometimes the only light left is the one at the end of tunnel. It taught me to cherish the little things, fight the battles that are important and look at the big picture. The big picture is that cancer is something our family is going to have to deal with. The battles that are important are the ones that make a difference if not for us, someone who walks the same road after us. And the little things are the smiles, the laughs and the crazy memories that crowd our minds and hearts.

We were excited to get Lily's G-tube out right before we went on her wish trip. She spent months referring to the strange sensations in her belly as "the frog". On our last night before we left Give Kids the world- a shiny green frog hopped up on the wall- scaring the bejeezus out of Bella. Lily started Laughing hysterically and suddenly declared it was the frog from her belly. We all agreed it couldn't have picked a better place to live.

http://www.firstgiving.com/teammallory

Well Burst my big fat Normal Bubble....

I can't believe Lily has been in school for 2 whole weeks. It makes no sense because my house is still a mess, my laundry is still unfolded and I definitely don't feel rested. Maybe next week will be the week.

The first week of school was a riot. Lily was excited every day and we established a routine, which is paramount for the lil monkey. We get up, get dressed, eat breakfast, brush hair and teeth and walk to school. In that order. Every day.  Since Phil is off this week, he's been trying to give me a break and get the kids off to school. Let's see, today is Thursday. He got up this morning, instructed me not to wake up and locked the door so the lil ones couldn't wake me.  About 20 minutes later I hear whimpering outside my door.  "mom!" comes a soft whisper in between whimpers. It's Lily. I am guessing dad broke routine. She does not do well with broken routine. I was hoping that school would ease her into accepting change.  I open the door to a tear streaked face and a great big afro. Oh Lily. " Dad did my hair wrong" another tear trickles down. She was instructed not to bother me, so she knows what will happen if she is discovered- but to her, the norm is worth it.  I spray some Leave in conditioner in and scrunch it back down.  She grins and skips off.  I meet her downstairs. I instruct Phil that once the hair is combed out, it needs to be scrunched down.  He shakes his head, I can do that! Unfortunately Lily's communication breaks down when she needs it the most.

The first day of school was uneventful. I went in early to give her teacher a little light reading about adrenal insufficiency and what to do in an emergency. I had an identical packet for the health room with a form that was signed to allow Lily to keep her emergency meds at school. I drop both off and let both know I don't expect any problems, these are just in case of an emergency.   I get home to a call from the Public health nurse who informs me that Lily's meds can't be kept at school because they are not on the formulary. I of course, in the least sarcastic tone I can muster- ask what we need to do to get them on the formulary because she needs the meds in case of an emergency. She suggested calling Lily's doctor and confirming if she actually needs them at school and get back to her. Seriously. I am pretty sure Lily's doctor thinks she needs them at school because she filled out the DOE HRS form 36 which requests the storage and administration of meds at school and pretty clearly stated the need. But I make the call. I speak with a nurse I trust at Tripler and she emphasizes the need for the meds at school. She enlightens me to some of the red tape I will have to deal with and gives me a couple buzz words which will be the scissors needed to cut through said tape.  I call the PH nurse back. She is a very nice woman, but I definitely get the feel that the first response is always to deflect then consider. She gives me the number of a doctor on the board who will have to approve the change in formulary and requests my doctor speak with her. I immediately make the call to the board doctor and leave the message with all pertinent information.  The next day is Friday, I want this ball rolling fast enough to get through the weekend- otherwise it will get lost.

My phone beeps- it's a reminder for an appointment with Lily's endocrinologist the next day. Talk about impeccable timing. As I was reading the fine print on the form 36, I stumble across the need for all meds to be marked with FOR SCHOOL USE. Oops. That can be fixed.  I then put the phone down and it rings, it's the school health aid, they cannot store the meds and I need to pick them up. I tell them I will get them after school. I spend the rest of the afternoon assembling another packet of information on adrenal insufficiency, including all the details of why it is necessary to have meds on hand. I'm not sure who will need this packet, but I am pretty sure it will be needed. 

I pick Lily up and she is beaming. She loves school and her teacher and her friends. I make sure her teacher knows there will be no meds at school until we figure the paperwork out and to call me if she has any concerns about Lily's health. I don't expect any problems and I want her to be treated normal, but in case of an emergency she has special needs. Lily's teacher is mild mannered and experienced and the perfect lady for the job.

The next day I let the kids know that I will pick them up directly from school to go to Lily's doctor's appointment. I am catching up with laundry when the phone rings. My heart sinks, it's the school number. "Hi Mrs. Mallory, we have Lily here in the healthroom."  Oh god, murphy's law. "It seems that one of Lily's classmates accidentally stabbed her in the hand with a pencil, it's a little deep but I cleaned it out. She would like to go back to class. "  Ok, great. I see how this year is going to go. I might have flipped out. I might have panicked, I might have demanded to know what kind of child stabs another child with a pencil, but instead I said- Ok send her back to class. My first thought was- karma. A week prior, Lily was practicing writing her name and Bella leaned over to see. Lily went to push her away and managed to jab Bella in the face with her pencil. I spent 30 minutes cleaning the wound.  At least Lily's was on her hand. When I called her dad to let him know how her 2nd day of school was going, he said- Karma. Later when Lily showed our neighbor, who was consulted in the face wound cleaning adequacy- she too said it- karma. I would have to say, I have not seen Lily swinging aorund a pencil since then. She also tends to favor crayons and markers these days too.


After a few more days of back and forth about meds, the PH nurse finally got the approval for the pills to be kept at school. Apparently Lily's doctor was a very nice lady who was adamant that Lily have meds accessible at school- duh. The biggest thing was that Lily's doctor was also adamant that an emergency injection also be kept at school. This was a problem for the school  because there is no one at the school qualified or willing to give the shot if necessary. So now we had to have a formal meeting to discuss the emergency procedures and options. The reccommended option was to put her on a 504 plan which would label her as being disabled- despite assurances that no labelling would officially occur- sha ok- so that she could have an injection at school. So much for normal.

Day 3 at school, I get another call, from the health aide. I don't think my nerves can handle this. "Hi Mrs. Mallory, we have Lily here in the healthroom."  Before I can stop it from escaping "what happened?"  "Oh it's not bad, her slipper broke and we don't have and spares."  Ok I'll be right there. I grab the first pair of shoes I see and Bella and I are off to deliver. This is one of many reasons I wanted to be close to their school. The next day we have a parent meeting, the day after that we have Lily's emergency procedure meeting. If I had any doubts about them knowing who I was on campus, they are gone.  The meeting went well. As Phil put it- it's not a big deal, the injection- tell em to just watch Pulp Fiction. And yet I find that highly amusing.  Darn it I forgot to put the purple sharpie in her emergency kit.  Anyhow. They agreed to keep the shot at school, even though they don't have anyone to administer it and they will call 911 in any situation they can not get a hold of me or Phil. It's not ideal, but the bases are covered and all necessary parties are aware of her condition and prepared to call 911 if there is any question. At least my packet came in handy. It seems to make more sense to have a nurse on hand, but that is not the world we live in. That would require a 504 plan and they think that's not the best fit option. I could throw a fit and demand they hire a nurse, but that would really pop Lily's normal bubble- so we are going with the hopes that her guardian angels are working overtime and we won't have any problems. SO far she is unaware of any of these shenanigans, which after all makes me successful as a parent at least in this moment. And on another positive side- I get bumped up to automatic chaperone for any of her class field trips. It's official- they put it on the form and everything.

Port Removal

Almost 2 years ago, with her second surgery, Lily received a Port a Cath for her chemo treatments and bloodwork.  The accessing of said port reduced many of us to tears on multiple occasions. Several occasions involved kicking. At the time I remembered telling Florence that by the time we get this accessing thing down- it would be time for the port to come out. She said, that's not such a bad thing. And here we are.

The removal was set for Friday, but Phil got a call yesterday from Doctor Edwards with a proposition- if we could come in today(Thursday) the procedure could be done in the pediatric sedation center treatment room and spare us the 3-4 hour general surgery admissions process. Sold- I said. 

So not only did we not have to get up at O dark thirty- the whole process was streamlined, which I have acquired a great, great appreciation for. I decided not to tell Lily about the schedule change until this morning, since she's shown quite a bit of trepidation about the whole event. Who can blame her? Just about everything to do with the darn thing involved some sort of owie. So last night after she was in bed, I let Phillip and Kiera know we were leaving early in the morning, Lily and I to the hospital- them to Monica's house for waffles and then to school. Bright and early this morning, I was fresh out of the shower when Lily meanders in sleepily demanding to know where her father is. I explain he is at work and take a deep breath for her panic when I tell her we have to go to the hospital today. She beats me to the punch,

"But daddy has to take me to get my port out, he can't be at work. " Hmmm. Maybe she has her days confused. I explain that the doctor called yesterday and we have to go in early- but the good news is that daddy will be home tomorrow and they can do something fun. That appeases her and as she is leaving, Bella comes in chatting on my phone. She is explaining to whoever is on the other line that Lily has to get her port out and she and Phillip and Kiera are going to Monica's for waffles.  I wonder who spilled the beans as Kiera- my little soicalite wanders in, completely dressed- ready to go. I think I have an idea of where the legumes got their nudge. 

We arrive to the sedation center and Lily is nervous. I don't know if it's the extra hydrocortisone she required to deal with the stress of surgery or just jitters but she is acting goofy. Wendy- one of our favorite child life specialists is entertaining her while I complete the paperwork. Within the hour, she is prepped and being wheeled into the treatment room.

The procedure was quick and Lily's wake up was a little rocky, but an improvement. Dr. Edwards let us keep Lily's port for show and tell.  Lily was generally pissed off that it was removed and disagreed with the usage of a see through bandaid(dermabond). She demanded her old skin back. A call to dad at work improved her disposition and soon we got to leave. As always, Lily got to pick the lunch- this time she surprised me with Subway- I thought for sure we would be having panda bear.  As a treat for this monumental occasion, she got to pick a treat from the shoppette and she found a great necklace- a dolphin jumping through a lei.

As always, I am moved by the toughness and resilience of kids. The child will spend hours refusing to wear pants and within an hour of a surgical procedure be skipping down the hall in wedge heels. That wardrobe choice was completely missed by me this morning and I am grateful no ankles were injured in today's production. All in all, it feels a bit strange but really good that this little piece of plastic is no longer a part of my child.  We're not sure yet if we are going to frame it or bury it under the tree in the back yard though- in any case it will definitely have to wait until after her first show and tell in Kindergarten!

What a difference a YEAR makes.

A year ago I was putting the finishing touches together for Lily's Chemo Independence Day party. At the time I thought we would make it a yearly tradition to celebrate her accomplishment.  What a difference a year makes. We celebrate her accomplishment every day, by doing normal things. Yesterday she had her scans and they all looked normal. We still have to wait for the final report, but I'll take normal.

 A couple of weeks ago, Phil and I snuck away to Vegas for our first 5 days ALONE together in I don't know how many years, 11 maybe. As I gathered a file of information for our neighbor, I got to look back at Lily's extensive medical history and consider how best to recap it, In case of emergency.  I began stressing. We don't have a good track record for trips to vegas. I wish I could say it was due to wild and crazy behavior caused by overindulging in spirited beverages....but generally it was just poor luck.

My first trip to Vegas, I was pregnant with Miss Lily. Very pregnant. We were on a 2 week car trip from Florida to California. I had never been to Vegas and we were going to visit with our good friend Kellie for a couple o days before we crossed the ocean to Hawaii.  Somewhere between Colorado and Nevada, this cough developed. Each time I coughed my throat would burn all the way down to my lungs. Being pregnant- I wasn't sure that I could take anything and I really didnt want my Vegas experience to be the inside of an ER.  We called our resident OB, my long time friend Jaime- who also happens to be Kellie's sister. She told me what I could take and fortunately it was something that somewhat relieved some of the symptoms. I trekked around Vegas- with my ginormous belly- coughing a fiery cough because I didn't know when, or if, I would be back there.  The next night Phil woke up in a cold sweat and he too, by morning had the cough. I lay there hoping this wasn't an omen for our move. Maybe it was just Vegas.  Kellie would eye us cautiously, but was the most gracious host to us and our hacking.

Less than 6 months after we got settled in Hawaii, it was back to Vegas for Phil.  We were expecting miss Bella this time and since Colorado was closer to him than Hawaii- I packed up the kiddos for a 4 month respite at my mom's. We stopped in Vegas for a quick visit with Phil on our way to Denver.  Again we stayed with Kellie, who had just moved into a brand new town home.  We spent the first day seeing some of the sights we missed the year before.  That evening we sat around watching tv and I just didn't feel well. As was the last time I was in Vegas, I was 8 months pregnant and attributed all general aches and pains to said condition. I turned in early.  Not long after, I was laying in bed with horrible stomach cramps when I hear Lil Phillip call me. Phil went to check on him as the wave of nausea hit me. I spent the next few minutes disposed, then composed myself enough to check on Lil Phillip.  As I helped Kellie try to clean Phillip's vomit off the entire length of her new couch, Phil dodged into the bathroom. Obviously what goes on in Vegas stays in Vegas- I didn't realize that applied to all culinary delights as well. We spent the next 24 hours quarantined in Kellie's guest room. The day of our flight, I disinfected Kellie's house from top to bottom- feeling horrible for descending upon her, again, with the bird flu. What a difference a year makes.

2 months later, Phil and I had a couple of beautiful days in Vegas when he graduated from weapons school- since Bella was brand new- she got to make the trip with me.  And even though I was still getting puked on every so often- it was a delightful trip. Kellie even offered to hang out with Bella- in the hotel room.


2 years later, Phil and I were making arrangements for Kellie's wedding in Vegas. My mom was coming out to watch the kids and I was so looking forward to seeing our friends and spending some time with my man. alone. And then we found Lily's tumors.  I was beginning to think there was some sort of curse involving us and even thinking about going to Vegas.


 2 weeks ago, as I sat quietly on the balcony of a room at the resort in Vegas where Kellie got married, I pondered how our lives had all changed in the past 2 years. It occurred to me that within weeks, we would be to the 1 year cancerversary of Lily completing chemo. That damn mitotane. There is no party planned. Last year we had no idea how this year would go. We waited every 3 months for those scans to show nothing.  I definitely underrated how great normal is.  It's not that we aren't proud of all that Lily has accomplished- but she is more than the cancer she battled. It's time to move on. There may come a time when we have to revisit this in one form or another, but for now I am choosing normal. It will never be as if it didn't happen. We have daily medications that remind us of our journey, and those daily reminders make me grateful for where we are. My celebration comes daily as Lily hugs me and tells me I am the "best mommy ever"- like she has a vast list of other mommies she's fired. My celebration is watching her excitement mount for Kindergarten and knowing that she will thrive and the world is a better place with Lily in it , for however long that may be. And mostly I am grateful for the difference a year makes.

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.