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.
Monday, October 25, 2010
Saturday, October 9, 2010
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.
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.
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.
Tuesday, October 5, 2010
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
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
Saturday, October 2, 2010
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.
