Thursday, January 29, 2009

There's no place like home

Phil and Lily got home last night and it went fairly smoothly. Minimal throwing up, no tantrums, sleeping through the night. I was doing dishes last night and suddenly I hear Lily screaming, I run to the stairs and yell up to Phil. I can tell he is trying not to laugh when he says- she's fine. I hear Lily between sobs- I AM NOT FINE! There is milk on my HEAD and it's not FUNNY. I immediately knew what happened. He was putting her to bed, setting up the tube feeds and some of the pediasure squirted out of the tube. I go upstairs and sure enough- the side of her head is coated in the thick mixture, which when left to dry makes an awesome substitute for glue.

Today she had her treatment in clinic and has been doing really well. She even went to Maggie's house to play for a little while. It is probably just to cast doubt in my mind since I officially cancelled her preschool enrollment and gymnastics the other day. On the way home from treatment she asked if she could go to school tomorrow- I swear she is psychic- that or she sneaks and reads my emails when I'm not looking.

I did a bolus feed this afternoon- which is a quick amount of pediasure at a higher rate. The lengthy medium-high rate feedings weren't working- so Phil and I did some research and came up with a game plan and then after much ado had it cleared with the docs and dieticians. Really the issue is only when we are admitted to the hospital making sure it is noted that we are allowed to touch the feeding machine- otherwise we get "busted" tweaking the machines. She needs 900 mL a day to maintain her weight. The other night they wanted to run 90 mL an hour for 10 hours( sounds like an algebra problem gone very very wrong doesn't it?) We tried it, it didn't work. Much past 60, she pukes. We know this from previous experience. But the residents didn't get the memo, the intern had issue with the orders not being carried out and Phil had problems with Lily puking when they were both supposed to be sleeping. The intern ordered the nurse to turn it up while Phil was sleeping, she tried to stop it, long story short- Lily puking, Phil irate. I'm not sure at what point in the medical food chain they are allowed to think for themselves, but our friend issuing orders clearly had not reached that point. The onc doc had stated multiple times that she does not care how or when Lily gets the feedings, she just doesn't want her to lose any more weight. So we do nightly feeds at 45-60 mL an hour and then 3 boluses during the day- sort of mimicking meal time. So far so good today.

She decided she would like to type a message so here goes.....

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee33333333333333333333333333333 lllllllllllliiiiiiiiiiiiiiiiiiiiiiiiiiiiily dddddddddddddddddddddddddddddddddddaaaaaaad

Kinda like when people let their kids do the voicemail message.

After tomorrow's treatment- we are halfway there. Where there is TBD.

Wednesday, January 28, 2009


So I was taking a break from researching HOW to get Lily the correct nutrition without making her throw up.... I added music to her site. I had run across a couple feeding site blogs and they all had music- I figured I could do it too. Unfortunately that means no shower again today- so be grateful I can add tunes and not smells.

I picked some of her favorite songs. Just be prepared if you are looking at work.....turn the volume down! I love IZ's Somewhere over the Rainbow- it gained notoreity as it was Goose's(Doc Greene) final song on ER. I had long since stopped watching, but had heard of it through friends who kept me updated. It had been a favorite song of mine before that and had actually made appearances in different films -but here on the island- it was played constantly when I was pregnant with Lily. Most memorably, On March 14th, 2005 as Phil carried this enormous bundle from the OR at Tripler, I laid there finally by myself for the first time in years and it played on the radio. So in my mind, it is always Lily's song.

Tuesday, January 27, 2009

Happy Lily-

Doctors from all over the hospital stopped by today because a rumor got out. It was rumored that Lily was in a good mood and just about every physician in our treatment regime came up to observe her behavior personally. She smiled and giggled and rarely yelled. It was a glimpse of our goofy little monkey. She even ate cheese and crackers and skittles. Since she only feeds us candies of our favorite color and it's too late for me to change my favorite color to red- I finally wised up and got her tropical skittles where the green is papaya or kiwi or something much more palatable than lime.

We have started her on another steroid. Flori something or other. After polite, careful, often repetitive suggestion by my mother that they need to address her adrenal insufficiency more closely- and perhaps my exhausted demands in clinic Friday that they have to DO something-they are. She has been low on salts and potassium and phosphorous- all somehow interrelated to raging diarrhea and adrenal insufficiency. She still doesn't seem to be tolerating the tube feedings without incident yet. Last night she sat up from a deep sleep and proceeded to vomit straight pediasure- smelled the same as it goes in- which isn't a compliment, it smells like vanilla formula- which- I guess it is if you think about. But then after we turned the feed off, no complaints. We just have to find the right.......

Dr. E even came up to see her and laughed at Lily, who at the time was playing a video game in the playroom- spread eagle with nothing but a pull up under her robe which was wide open. Dr. E suggested a wife beater shirt to make the scene complete. She also said pretty much that chemo pisses off the intestines and we couldn't expect her system to work right. Just keep swimmin just keep swimmin......keep diluting the formula and extending the feeds to get her nutrition.

The cancer shrink also came in since she had witnessed satan's spawn on Friday, bringing her fellow head shrinker in tow-I thought she wanted to see the "other" personality. We were about a half an hour into the "visit" when it occurred to me- the co worker's presence was to distract Lily- I was being "shrunk." Ah well, it didn't hurt. I realized it when she asked me if I felt guilty for Lily's illness. Of course- but mostly I blame Phil, if he wasn't so damn irresistible we wouldn't be in this mess. Coulda just left me as a spinster, but instead..awakened the reproductive machine within. Darn him. But everything happens for a reason, and this is no different. Perhaps Lily will go on to discover a cure for cancer, perhaps one of your children will for her sake, hard to say- but she is meant to be here and I will totally take credit for that.

At one point today I was being disowned and a new phrase popped into my head and out my mouth. "you're not my mommy anymore" she was screeching at me. " ah well, it was a nice run kiddo- I'm glad I could be your mommy for a little while- it was an honor" - she started giggling hysterically- " oh you ARE my mommy again for a BIG while".

Monday, January 26, 2009

Another Chemo Monday.....

I sit here and it's quiet. Phil dropped the kids at school on his way to Cycle 4. Due to the Rockiness of the past couple weeks- they let us stay home last night and bring her in this morning. I will go in tonight since he has to be in to work early tomorrow. We had 2 good days, Lily felt better, only a few major mood swings and 3 nights without interruption. Bella woke up and is sitting, quietly on my lap. I know it is short lived, but it is nice.

A corner of the kitchen is devoted to Lily's medical paraphenalia. We also have a cabinet shelf in the hall upstairs for the nighttime regime. I used to be bothered by all the clutter on the counter- now it is overshadowed by stuff we need daily. Phil keeps trying to find an organizational system that works.

Lily helped the past couple days with her meds. She likes the mortar and pestle. She put tea and sugar in them and mixed it together. We had to stop at Walmart on Friday to get Mylanta, as a last ditch effort to help her tummy(on the good side- it really seems to help- a true "now why didn't I think of THAT" moment). I remember my dad drinking the stuff out of the bottle. The sign hanging above the Pharmacy has a mortar and pestle on it- Lily recognized it instantly. Ironically enough- there is not a mortar and pestle to be found there- but lots of options in the antacid front. She has started unhooking her feeding tube and this morning she said later I can teach her how to put it on. She has a little backpack we hook it into during the day. She went through a phase where she pretended to sleep every time I took her picture- like there is a shortage of pictures of her sleeping. Unfortunately none of them are between the hours of 8pm and 6am.

Sunday, January 25, 2009

Wishes, Hopes, and Dreams

Wishes are an interesting concept in the eyes of a 3 year old. Generally if you ask her what she wishes- she starts reciting "star light, star bright". Today we had a meeting with two very nice ladies from the Make a Wish Foundation. Lily has been asked to make a wish. Make a Wish grants wishes to kids who have life threatening illnesses. It was a big day in our house- Lily got dressed. It took a lot out of her.

A few weeks ago, when Ms. Julie asked Phillip who was having the hardest time with Lily's illness, he snorted and said "LILY". So she asked him, besides Lily, who was having the toughest time- "Still Lily" he replied. That wasn't one of our better days. She finally asked him what he missed the most. He said " getting to come home after school". Phil and I had a talk after that and decided we would do a family trip when we could- to Disney, to celebrate getting through this. The kids loved the idea and Phillip and Kiera take turns telling Bella and Lily the bits and pieces they remember. At one point or another dinner talk returns to "when we go to Disney- can I ride this ride?" Lily has learned that many of her favorite characters LIVE at Disney World. So naturally she too is starting to get excited. We point out that Spiderman and Dora and Shrek live nearby too at Universal. I start to get sucked into the dreaming. If we are gonna fly ALL that way- Really you need at least a week to do Disney with wiggle room for naps and such. A couple more days for Universal....Phil reigns me in. 6 people, 6 airplane tickets, that many nights in hotels - he shakes his head. And I'm usually the pragmatic one when it comes to budgeting...and then we got a call.

One of the Wish volunteers chats with Lily while the other has me sign paperwork. The ball is rolling. It's a strange feeling. Many associate Make a Wish with last, final wishes. She assures me that there is nothing they like to see more than kids growing up to lead healthy, happy lives. After they made the appointment to come see us, I was telling Phil about it. He tentatively asked- " so um, what if she, um doesn't , well you know"- well Wish policy states that upon the unlikely event that the wish grantee survives- all expenses must be reimbursed in full. Seriously- they throw a party and hope that the wish played a part in the recuperation. She tells me, many times the wishes are merely opportunities for families who have been bogged down by strict treatment regimens(what's THAT like?) to reconnect and relax. Sign me up. Therapeutic. Part of me wonders if there isn't someone out there who needs it more than us. It's so hard to accept unconditional gifts as just that- unconditional. It helps to know that a lot of the donations the Foundation are from corporations, but from personal experience I know that many donations are just that- personal. At the same time, I know that taking a family of 6 to Disney World isn't in our budget for the next 5 years-at least. I'm not sure what Lily wished for exactly. I heard bits and pieces about hugging Pooh and meeting Jasmine and Dora. We have time to plan since really we probably won't be done with treatment until after summer. I am just floored by the generosity of it all. And hopeful that this will be the perfect incentive to get us all through the next tough months.

Friday, January 23, 2009

Here we go Again.

We showed up to clinic by 9, hoping to get out of there earlier and maybe get home to a such luck. Well, Lily managed a nap. She needed it considering her new routine includes cat naps here and there, at the expense of a good night's sleep. 6 hours later.. A blood draw, an ECHO, another Xray, meetings with 6 different doctors (psychologist included), and a hearing test and we were finally on our way home. We still don't know why her belly hurts so much, her behavior is somewhat "normal" for what she's going through, her heart is good, but her high frequency hearing loss has started. Another piece of her slips away. The audiologist assures me it's way out of normal ranges of hearing and we will keep an eye on it- considering everything going on this is small beans. 3 months ago I was explaining to my husband how- considering everything she's facing, what's a little hearing loss? Yet today, when faced with it, it doesn't seem insignificant at all.

Thursday, January 22, 2009

Lily's home

Lily and Phil got home last night. Her counts are going back up. Her attitude is standard roller coaster. We go in for check up to clininc tomorrow.

Good Nights

Phil and Lily got home last night, shortly after dinner. She met everyone with great big smiles and hugs. Right now she and Bella are enjoying a little cooperative play after beating the daylights out of each other for the past hour. Bella wanted to play with the Barbie dollhouse and Lily disagreed that this was a viable option under their current cohabitative situation. She then proceeded to whack Bella over the head with Barbie and Ken and continued to do so as Bella retreated down the stairs. At this point, I intervened before Bella got the chance to yank a tube out and we all get to check back into the pink palace.

Last night was the standard adjustment. Any time we come home, the elation of being back in a familiar place is followed by the crash of emotion- usually at bedtime. Our bedtime. She usually goes to bed fine and then wakes with a nightmare that leads to hours of battle. We have come to expect it. We try to get released earlier in the day, but no matter our efforts, it happens. Last night she kept swiping in the air yelling at an invisible nurse to leave her alone. Her standard routine as vitals are taken in the hospital every 4 hours. Phil and I have determined when vitals are required and have recently learned that we can refuse vitals. Usually the refusal takes the form of Lily screaming and kicking at the aide, but now when she isn't on chemo or narcotics, we can refuse the 11 and 4 o'clock vitals. Rock on. Can't they just write that in the chart - it's already in there that if you wake her you will be plagued by the she-devil for hours- can't we alleviate the whole waking the she-devil if not absolutely necessary?

So back to last night....she is kicking and screaming at me. I am banished. I leave. The problem is that 2 days ago we were getting low on Pull ups( actually good night brand with the pink ballerina- don't hold as much as nighttime pull ups- but she refuses to wear anything else.) I run to walmart and grab the last 2 packs and deliver them and other necessities to the hospital. I get home and am unpacking and notice that the design has changed to purple butterflies. Crap. I text Phil a warning. This is gonna be bad. He says it will be fine. I know it will not-be-fine. He had enough ballerina pullups to get them home. So we try introducing the butterflies- they're purple, your favorite color. Not so much. She hates purple butterflies apparently. Who knew. We finally get her to accept the situation, only after she drips poo all over the newly disinfected bathroom. I get the mess cleaned up, while Phil hooks her up for bed. As we are closing up downstairs, she is crying and yelling. I get upstairs to find that she has stripped off the butterfly pullup and is on a rampage about how she is going to wear underwear from here on. Great, what's next CLOTHES? PAJAMAS? How about we wear underpants tomorrow, after we sleep? No. But you have to get up to go potty and you have the pole and you don't always wake up and the mess......Allright wear underwear but you have to put the potty pad( incontinence pad) inside. Ok. We get it situated, hugs, kisses, goodnight and as I turn my back- I hear her ripping the pad out of her drawers and fling it onto the wall. Outstanding. Back to square one, I take a deep breathe and decide to go tag Phil for swap out. He comes in as she is trying to get out of bed. I suggest we unhook her, he says to let her tire herself out and proceeds to hold her while she kicks and screams and I'm pretty sure we are uninvited to her birthday party- at which I'm guessing she will NOT be wearing purple butterfly pull ups. What seems like an eternity later, she conceeds to wearing a pull up, but mommy has to do it. Phil quietly steps away and I get the pull up on. She is laying there, I kiss her goodnight and sigh. I am not even to our bedroom when I hear the squeak of the pole and her little voice and I'm pretty sure she's swearing at me. Oh S*%$! She's on the move...I race to to her room and as I reach her- the pole is mid air falling backward. Oh mother bleep of all bleeps I think, I may have actually said it, or something along those lines- but I can't be sure. I honestly don't know how she may have heard those words that came out of her mouth. I don't generally swear, when I do the entire family cowers and knows we've reached the invisible precipice and that everyone should carefully, very carefully, tiptoe away from the mommy. I watch, unable to stop it and for one moment realize that there is nothing I can do, her button is going to be torn from her body and I'm gonna have to see it. At the last second the IV pole hits the foot of the bed and stabilizes, preventing the bloody disaster that it could have been. Lily is screamin : "My button, I'm sorry mommy", so I know that after a brief visual exam- everything is OK. She slithers back to bed and declares that she has to go potty. I unhook bag and machine from the pole and become the human IV pole as Lily sits on the floor of the bathroom lamenting over how much she does not love me anymore. And apparently she hates butterfly pullups too. She yawns, she wants to go to bed. I am bracing for starting this all over again. She lets me put the pullup on and I lay next to her. She reaches up and touches my face as she runs her nee-nee through her fingers. I am grateful she doesn't feel the tears running away. Her breathing evens out, I sneak away to Phil, who just holds me as the hopelessness of the situation washes over us. And we worry together. We worry that this is not working. We worry that this treatment is not doing what it's supposed to and merely prolonging the unimaginable. We cringe that we let ourselves feel this way, but have to feel it nonetheless. We want her to make it. We want this to be a bad memory, but as we look back at pictures and see the spark that used to be there dimming, I know that the chemo is doing what it is supposed to. It's darkest before the light. I know it is still getting darker. And when there is a little twinkle in her eye, I know that the dawn may be far off, but it will come. It has to.

Tuesday, January 20, 2009


Monday Night-Tuesday Morning
The only reason I am not sleeping yet, is because Bella is not sleeping yet and she can't be trusted not to wreak havoc if unattended. The past couple of days Lily seems to have constant Belly aches. She calls it "Bubbles gas". Since we have been consistently using her feeding tube, we have been watching carefully for infection, but figure her tummy is gonna be a little sore. So yesterday she took two naps and I figure she was hitting her "nadir" as far as counts go. She felt warm to me, but her temp never was above 99. She went to bed and I was up a couple of times to check on her. By 2 am she was moaning and crying and saying her belly really hurt. Her temp was still not high, so I turned her feed rate down and got her back to sleep. At 3 am, some yahoo decided to celebrate the inauguration, Chinese New Year, the temperature drop....with an elaborate fireworks display which sent Bella screaming into our bed. I get her settled and Lily is back up. My head is throbbing, but I chalk it up to lack of sleep. At 4 am I take her temp and it's 99.8 under her arm, which means it's closer to 100.8 which qualifies for a call to the on call doc. She is all bundled up, so I unwrap her a bit, try and get her comfortable. I get dressed and pack a bag and call the doc. Since it's a holiday, we have to go into the ER. I pack her access needles, since they can't be trusted to have them there, extra masks, since everyone there is nasty sick, and all her related meds. We get to the ER and the clerk checks us in and asks us to have a seat. The ER waiting room is by no means full, but one lady obviously has a nasty coughy contagious thing going on that I want NO part of. I am about to request a nurse when another clerk comes out, takes one look at Lily and asks if she's Oncology- I said yes and neutropenic. She goes to get a nurse and we are put in an isolation room. One of the Peds residents we know comes in and gathers the data and starts a plan of attack which includes fluids and antibiotics. Lily is moaning and quite uncomfortable. Finally we get her port accessed and got her some tylenol and antibiotics and we are waiting for her room to be ready upstairs. She drifts off to a restless sleep- every few minutes jumping awake and saying she's falling. I wrap my hands around both of hers and she nuzzles into my arm. We both drift off. My head is just throbbing and I look at the clock- 8:30. Probably just need caffeine, but it's gonna be another hour or so til I get a chance. My stomach has that "I didn't sleep last night " icky feeling. By the time we get upstairs to the ward, Lily is doing OK. Her counts are low across the board and will be getting platelets and Red blood cells later in the day. She's had 3 xrays and about 24 different people in to look at her and I am not feeling well. We finally get into a holding pattern and the nurse gives me tylenol and says to catch some rest before the next round starts. As I lay there I'm beginning to feel like this is more than icky tummy. I call Phil who is at alert. He starts to make the calls to relieve me. Stew is with the kids already. And then I get that tell tale tickle that tells you that you are going to get to see whatever you had for dinner. I help Lily go potty and it hits me. Projectile, nasty 10 minutes that seem like forever, pulling every muscle in your neck, puking. This is bad. Very bad. I'm sick and chances are I've already infected her and she's neutropenic. I don't think I could have felt worse at that very moment. I clean up and call Jackie, I can't drive home, I can barely stand. Lily wants me to snuggle with her and I wish I could with all my heart. I have her call the nurse and then I call Phil. We'll have to have the nurse or aide sit with her until he gets there and my stomach is lurching and heart breaking all at once. Back in the bathroom I go. I stay there until the nurse gets there and then I leave, Jackie the absolute angel she is, has the car waiting outside the hospital. The whole time in my head I hear Lily's sick little voice telling me as I left " I'm sorry I made you sick mommy. I love you." I know she is in good hands with Miss Sandra the aide, who is reassuring her she did not make mommy sick. My head is spinning and Jackie realizes we aren't gonna make it to my house, so she takes me to Stew's and tucks me in. I wake up completely unsure of where I am and mortified that I only vaguely remember getting there and I have NO idea what's going on with Lily. I text Phil and head downstairs- where Jackie greets me with an entire sickie care package, complete with toothbrush and toothpaste and an update on Lily. Phil was at the hospital within a half an hour of my departure, Lily is in a lot of pain and they can't give her good meds until they rule out certain problems. Well get to rulin' out I say. She's been there for over 6 hours, that's too long to be in a lot of pain. Not too mention she's got a cold and I know she feels icky. We formulate a plan to get my van. She really doesn't want me to drive- she seems to have the impression that I can't dry heave and drive at the same time- But I appreciate someone looking out for me nonetheless. We will get my van from the ER parking lot, drop her car at Stew's house, she'll drive me home and Stew and she will carpool home. Only problem, I left the lights on in the van, it's dead. Jackie is laughing hysterically- could anything else go wrong? I inform her that Grandma Helen's famous for saying "it could be worse" and the family finally had a moratorium which led to an intervention on the outlawing of the usage of aforementioned phrase. It seems like when you taunt the gods with such phrases, they like to test you. It doesn't seem to matter if you pass or fail either. But I digress. Jackie drives me home.

I open the door and Kiera is perched on the couch with a dripping ice cream cone, sobbing uncontrollably. Stewart informs me this is result of his telling her she could not have ice cream in the living room. She informs me that Phillip is ruining her life, meanwhile Bella runs up to me and she is covered in snot which she lovingly smears all over my leg. Phillip informs me that he is definitely NOT ruining her life, but he is hungry. I am so grateful that Jackie took me to get rest- there is no rest to be had here. They help keep the situation under control and I try broth. Umm not a great idea- back to laying down. I call Phil. He sounds at the end of his rope- in the sense that Lily's still in pain and they need to do a CT scan first and that isn't scheduled until midnight. We finally get everyone fed and situated and Stew and Jackie go to rescue the van and start the studying and whatnot they need to get done before morning. What would I do without them? Everything happens for a reason.

Phillip is restless, Kiera is moody, Bella is snotty. Oh I already iterated that. I finally get them in bed- not their own beds, but beds. Bella fell asleep while I was starting this blog, I carried her to bed, Phillip was in her bed. He immediately snuggles with her. I get that warm gooey feeling in my chest. She snuggles back. Aaaah. I can go to bed. An hour later Kiera is coughing, Bella is coughing and in bed with me. I check on Phillip who is now in Lily's bed. I get the girls cough medicine and we go about this business called sleeping. So apparently many people do it for consecutive hours at a time, glorious, I should definitely incorporate this into my routine. It might even prevent bouts of gut wrenching vomiting. Lord knows I've become a hand washing freak. This morning's updates: Phillip is home from school. Bella still coughing and runny, Kiera is a little more functional, I am way more functional but achey. Lily is feeling a lot better and is requesting food. All of her scans are normal so they surmise her aches are side effects of chemo. She is getting her mitotane regularly now and it has caused a further decrease in the function of her good adrenal gland, that causes a salt decrease and hormone decrease and some aches. Her fever is gone. There are rumors of her coming home today, although the home environment is less than disinfected at the moment. I can't remember the last time I was still in bed at 10 am, so my time is probably up. I'll leave you with my conversation last night with Phillip:

Are you throwing up because you have a baby in your belly? Definitely not, it's a virus.
How do you know? I KNOW.
Do you feel really bad? Yeah.
I know you feel bad mom, but no matter how bad you feel, I know Lily feels worse.
I know buddy, I know.

Monday, January 19, 2009

Extra prayers

Tonight Lily is back in the hospital. She is neutropenic and all her counts are really low. She has gotten 2 transfusions so far and we are trying to determine why her belly is hurting so much. She is in a lot of pain and they can't give her anything stronger than tylenol until they get it figured out. Her button doesn't look infected. I came down with a tummy bug this morning, so Phil is with her at the hospital. I'll try and get the full story out in the morning. I know she is in good hands and her daddy is fighting for pain meds.

Worse news, one of our Oncology friends from the ward has been sent home. There is nothing else they can do. Her name is Elikia and she is a remarkable 9 year old who has battled leukemia for the past year. Please say an extra prayer for her and her family to get through this extraordinarily tough time.

Sunday, January 18, 2009

"Cold" front

So my house is still standing. I think the winds got up to a gusting 30. I think there may have been a power outage somewhere, but I didn't hear about it. The big news today is that I got to get my flannel and sweats out as the temperatures outside dropped to a nippy 55 degrees. I chuckle as Lil Phillip asks if it's cold enough to snow. It apparently is not cold enough for clothes as Lily refuses still to wear any, but she has conceded to the temp slightly and is covered with a blanket. Bella has a swim cover up on with the hood up. I wonder how long it will be until the state issues a freezing water warning and recommends we all flush our sprinklers.

Friday afternoon, Lily crashed watching a movie in our bed and we took the opportunity to hook up her feeding tube. She didn't even move, and I even managed to wiggle a towel under her in case there was a pull up malfunction. We worried she was hitting bottom, but she never got a fever. She woke up at 10pm ready to start her day and Phil stayed up with her until the Benadryl kicked in, I mean until she naturally became tired. Yesterday she was fine and mellow, so we hung out while Phil took the big kids and Bella to the water park. She even helped me with a couple pages in her Pooh scrapbook. I hadn't realized how much Pooh has followed us around the past couple of years. I have a new picture to add, Grandma knitted(crocheted) Lily and Pooh matching beanies- just in time for the cold front. They are very cute. She now has a new record, the camo pooh hat she wore for 6 minutes- she wore the beanie for 11. Pooh on the other hand wore his all day, except when Bella stole it to wear(aka taunt Lily).

Friday, January 16, 2009

"Severe" Weather

So yesterday evening, around dinner time, they cancelled school. All of those years I lay in bed praying for a snow day. The years in college that I missed class because my car was buried under 3 feet of snow and schools were still on. Trying to get to class in hail and sleet. Driving carefully and sometimes sledding on black ice. Phil tells stories of the Academy when the terrazzo was slick, covered in ice and the winds were so high- they opened their jackets like sails and caught a ride to class. Had I known, we just needed to move to Hawaii. Where Wednesdays are always short days. Still haven't figured that one out and every haole mom here has a story of forgetting to get the kids on Wednesday. It's a good thing Phillip and Kiera are now in after school care because I rarely know what day it is much less what time. And apparently when the wind blows, they cancel school. Really? I don't know why the education system here is decades behind. I feel bad for all of you bundling up your children in subzero temperatures and braving real elements....

So later on, if my house blows away- I will eat my words- but IF it blows away- technically shouldn't the school structure be a sound shelter? Right now there is a breeze. Last night we plugged in the IV and feeding pumps to make sure they were charged- charged the DS's and DVD players- because lets face it- if the power does go out, I don't have the energy to help them put on plays and such like we did when there was the earthquake and the power was out all day.

All I know is that I've refereed about 6 fights so far- Lily threw up because she was being chased by Phillip who always complains about getting up at 0715 was up BY 0700 chasing LILY! And it now is a 4 day weekend. And we can't go out and do anything because Lily is borderline neutropenic. And unlike the wind right now, THAT blows. I think we are gonna do spring cleaning, early. Nothing gets the kids to hide in their rooms like announcing 'we're having cleaning day! '

Thursday, January 15, 2009


So we are trying to find a routine again. I realize that isn't going to happen, but sometimes you gotta say- this is going to be the routine, for today.

Lily has been waking up vomiting between 4 and 5 am when her zofran wears off. We tried to adjust her zofran schedule a little yesterday so her last dose was when we went to bed- but that still only buys you 6 hours. It is also problematic, because the mitotane makes her feel so yucky that the two really need to be paired close together. Since Phil had to get up at 0445 to go play war, we went to bed around 10 and sure enough I got the wake up call at 4. There wasn't any beeping last night- but every time I hear a cough I have to get up and check it out. Since Kiera and Phillip both have coughs- there was quite a bit of checking going on. The silly IV machine is ancient and likes to beep- a lot. Phil actually called the company yesterday and started asking for something that was born after 1980, but made little progress. Fortunately the food pump is newer and doesn't like to beep unless there is a problem. I guess the bright side is that Lily is doing well and the IV fluids should be discontinued today. The button is working well. I just have to be careful to stagger the meds in a good order- anti nausea first, mitotane last. Since the mitotane requires so much milk and a good flushing, I don't want to overload her little tummy. Yesterday I put everything too close together and was rewarded with 2 puke sessions. It's hard to say if she would or wouldn't have thrown up anyway, but having extra stuff in her tummy didn't help.

This morning she allowed Bella to help clean around the button. I was impressed by both of them. In a little bit we are off to clinic, which should be fairly uneventful. I say that realizing I just jinxed myself, but it's too late to take it back.

Monday, January 12, 2009

Sleep Doctors

So Monday, we were up bright and early to forge our way to Tripler for Lily's MRI and CT scan. Lily woke up throwing up and then threw up her meds a half an hour later. I felt very confident that when they asked me in the sedation center if she had anything to eat or drink since midnight, I could say no. Theoretically she was in the negative range after the past 2 hurls. We were running late due to traffic, and as we were hustling down the hall, we passed the anesthesiologist from Monday's procedure. We did not hit it off well. I am starting to formulate an opinion of anesthesiologists based on my experiences which are more than the average mortal and less than the average health professional. I think they mostly are suited for patients who are unconscious. Last Monday he waltzes into our curtained corner and starts drilling questions. That didn't put me off- I've been in pre-op before- it's a busy place. People rush. Time is of the essence. He is putting me off though with his accusatory tones and questions about why we didn't have a pre-op appointment with him and why isn't her full chart there and can he use her port? I just show up where I'm told, relatively close to the time I'm told to be there. I am not the keeper of her chart, so can't help there and the port is there to be used. Is it accessed? Can I use these tubes? Yes. Dude are you flippin blind- the child is sitting there naked except for a pullup- her port dressing is pretty obvious. Of course I was polite and say yes. What I'm asking is has it been used recently? Has anyone upstairs been using it? I'm not sure if there is port protocol or ownership issues, but I'm pretty sure all answers default to me, and I have already said yes- like 85 times. She was admitted last night for fluids, it was accessed then and yes they were using it up until we unhooked it to come down here. Why was she admitted? Are you dense- she requires fluids before chemo and we are going to start chemo as soon as this g tube is placed. So they were using this port so I can use it too, good that makes life easier. I mean I guess I should take it easy on the guy, her entire chart is not sitting there- so how could he possibly know any of this? Oh that's right, everyone's records are now computerized- go flippin look, do we seriously need the tome that is Lily's medical history in the chart for today's procedure? We go over all the medications she's on and he finally goes to get the happy juice. I hear him grumbling at a nurse about how Dr. E hadn't signed the chart, she needs to sign it and something or other about everyone here seems to know this kid except him. Confidence inspiring as always-but it's Lily- everyone loves Lily- and lets face it, she's around there- a lot. Fortunately it's a minor procedure and I know that Dr. E will oversee everything so I sigh and try and keep Lily distracted. Lily is a riot on the sedatives. She fights it and waves her arms around and sings songs, except it sounds like she has a mouth full of cotton. She finally passes out and they are on their way. When she wakes up she is PISSED off. Again- can't say I blame her. She looks at the feeding tube and panics at the sight of the blood. For 2 days she keeps the blanket over it and no one can look at it or touch it. She makes the doctors hold their hands behind their backs when they look while she shines the flashlight on it. Only her favorite nurse is allowed to clean it. The night we finally accessed it, I was panicked since Julie had already gone home- but with the ativan/morphine combo- it went pretty well.

So back to Yesterday- wow the temporal distortion of cancer is amazing. Forever life will be- before Lily had cancer- when Lily had cancer and the part I'm looking forward to- the after cancer time frame. Days feel like weeks, weeks go by, did that really happen yesterday- it seems fresh yet so long ago.....We bump into Mr. Sunshine Anesthesia of the Year in the hall. Hey is that Mallory? Yes, this is Lily. I have her case today- an MRI and CT? He actually pauses and looks at me- so I take the opportunity to give him the run down of everything he needs to know for today- since he likes to be in the know and all. She's thrown up twice this morning and she's gonna need a stress dose of hydrocortisone. We tried, it came right back up. Her button on her G-tube is also clogged, so Dr. E is gonna try and switch that out and on the tail end of sedation they want to pull the stitch on the tube. I can give her hydrocortisone, no problem. Which are they doing first MRI or CT? Don't know, they tend to be fickle. He seemed to appreciate that. So the itty bitty doctor jus wants to be in da knowwww. Here's me rolling my eyes. So we get to the sedation center and he makes this big fuss about my having to sign the consent forms since we are there every other week. I am highly amused- really a little insight into what makes people tick can get you a long way. The forms are such an insignificant thing- it's 2 signatures, now if he could streamline the discharge process- I'd be impressed. Miss Patti who is a bubbly bundle of fun nurse ,who usually helps us is doing her best to avoid him and he is ranting on and on to another nurse. He finally leaves and although I know it's highly inappropriate- I know Patti will give me her opinion if I phrase the question the right way. I mention that he rubbed me the wrong way last week and if she had worked with him before? She says he is not great with adults but that he is very good at what he does. A ha. So there you have it. Phil and I wonder if they pull people aside in med school and say- hey you might wanna consider a specialty where your patients are completely incapacitated? Those with ego trips need to induce the incapacitation...anesthesiology. I mean it's that or the morgue. Even though surgeons' patients are mostly out, they still have far too much interaction with humans who are awake, they aren't always good at it but they have to do it. But that's just my opinion. Lily is doing good. Much less puking and she's up and about today. She ate a little dinner with us last night, which was really nice.

We have also devised a process to administer mitotane that has worked so far 2 times without clogging Lily's button. Phil sent Stew on a mission to procure a heavy duty mortar and pestle from Williams and Sonoma downtown. Stew, after witnessing the clog and distress it caused did some research on his own. He found on the internet- it's not that mitotane won't dissolve in water- it just requires higher quantities. 1 liter per milligram to be exact. So we would have to dilute it in 750 liters of water per dose. Perhaps we could fill the tub with it and she could soak in it? She always drinks a little bathwater anyways. That seems slightly unrealistic, and somewhat we grind up the pills in the mortar. We then mix it with warm milk. I then grind the milky mixture in the mortar and add a little more milk. Not at all a process- just a little fun chemistry for me to practice when I don't have anything better to do like change sheets, run IV's, keep Bella from destroying the house and what not.

Sunday, January 11, 2009

Murphy Murphy Murphy

When it rains, it pours- and it seems to be doing a lot of it the past couple of days. I still look for the rainbows- they're my sign that it will get better. There was a beautiful rainbow yesterday as we came home from Tripler, for the second time, that day. But really my story begins on Thursday.

By about the 3rd day of treatment we start getting run down. Phil looks forward to just being home, and some aspects of being home are great- others are a lot of work. I don't sleep as well because I'm waiting for a beep or a little voice to call out to me or another little person to hop into bed with me. Plus I don't have a call button to push when the poo starts hitting the fan or if I'm tired of playing Barbies with Lily.....But I digress. On Thursday, by the time Phil and the kids got there for swap out- I was just ready to go home and get some sleep. Lil Phillip was happy to play and Bella was trying to take a nap again in the room. I finally get everyone situated, got Phil some rations and we are out the door. I get the kids loaded in Phil's car since Lily requires air conditioned transport and she would be coming home later. Bella, the stroller, diaper bag and overnight bag packed in too. I turn the key in the ignition. click click click. NOOOOOOOOO. Not click click click -It should go vrooom. I try again. and again. End result being Phil calling Jackie and Stewart to pick us up and take us home. One of the only good things about Grandma Sandy being in Iraq is that her car is lonely and will be coming to visit with us until we get Phil's car situation figured out. It's time for the beater to go. I've been saying this since we got the thing. I'm shooting for a beater that has air conditioning this time! We have less than stellar luck in the vehicle arena.

So Jackie and Stew kindly hang with the kiddos so that I could have a nice warm shower. Really it was for everyone's benefit. I start the laundry and picking up the house and finally get to bed. Fast forward to Saturday morning. Phil has drill and heads into work and Jackie and Stew come over to hang with the kids. Phillip goes with the Turners, but it was a tough choice for him. Hang and play Rock band- hang with Pono...tough choices for the 9 year old. I get everything in order to take Lily back to the hospital for her last treatment of this cycle. They didn't even discharge her the night before- just sent her home on an overnight pass. Lily requires a bag of toys, the portable DVD player with Aladdin and I pack the diaper bag with the necessary items. We head to Tripler. Relatively painless, an hour of chemo, discharge, we go home. We get home and the girls are napping, Jackie and Stew have picked up the house, folded laundry and all is well. And then I give Lily her meds. In her feeding tube. And that is when it fell apart.

The doc had given us liquid meds for the feeding tube. The only one that does not come in liquid form is the mitotane, which is the chemo drug that kills the adrenal cancer and she HAS to take. The famous mitotane that we've tried putting in peanut butter, ice cream, pudding, hidden in various meals ...and eventually taught Lily to swallow. The bane of our existence for the past 3 months- yet it is the 1 thing that could cure her- so we do it. So much discussion has occurred over the past few weeks about the best plan of attack to get the mitotane into the feeding tube. It does not dissolve. In anything. Ever. Under any conditions. Ok that's a slight exaggeration, it is fat soluble. But I don't think they generally advise shooting oil into feeding tubes. We experimented at home trying to find an acceptable medium- and really nothing worked. The best advice was hot water or milk. Since it is fat soluble, it doesn't have to be administered in a fatty liquid, there just has to be something fatty in lily's tummy at the same time. We were having luck with warm whole milk. Then my mom made some calls to St. Jude's and they said soak the pills in hot water. So I ground up the pill as fine as I could and started soaking it in hot water. I get the rest of the meds in line and the tubing and an hour later we are ready to start the process. I plug her tube in, flush it, give her the first round of meds, flush and start giving the mitotane. It's going well. Until the end of the tube- some of the pill has settled at the bottom of the syringe. Jackie grabs me some warm water- we dilute and mix the remaining dregs and I start pushing it into the tube, and it stops. I try to suck back, nothing, push again, nothing, suck nothing, suck, push,suck,push, nothing. I switch tubes. Nothing. I prime a new tube with coke and try, nothing. I call Phil who asks me to check this, that, the other. Everything checks out with a big fat nothing. I call our neighbor who is a nurse- she gives it a shot, nothing. We let the coke sit- I mean- it digests metal- surely it can handle a little mitotane. Nothing. It's time to call the doc. Ugh. We've done everything she would suggest- time to go back to Tripler. I grab the associated bags again- and off we go, again. Fortunately we go right back to peds ward-they try everything we tried, nothing. They call Dr. E the surgeon. Since Lily has an MRI and CT scan on Monday, she will look at it while Lily is sedated and try to change out the button. If that doesn't fix it, she'll have to go back into surgery. Ugh, and hopefully we can get this all taken care of before Lily's white cells drop. She's eating bites here and there and we have her on extra anti nausea meds so she hasn't been throwing up too much. Fortunately we can still do IV fluids so she is well hydrated. All the while Lily keeps informing me that I broke her button and it's all my fault- Like I don't feel bad enough.

Friday, January 9, 2009

Lily's Home

Lily and Phil got home a little while ago. We gave her her first at home round of meds and I'd have to say preparation is fairly intensive, but the ease of administration makes it worth it. Later on we will begin our first at home feeding. We have a pump that comes in a little backpack- so later when Lily feels like hiking- we strap it on and off we go.

So there are attachment tubes and we pop off the little cap thing there, and twist the tube on and then we can give meds through the tube or hook it up to a pump that will deliver pediasure overnight. She is supposed to get 900 mL of fluid over a 10 hour period, which Phil and I agree will most likely lead to vomiting- so we will have to see what rate she can tolerate. It just seems like an awful lot for her little belly. We'll see.

Lily is wearing around Kiera's old tap shoes and has some pretty impressive tap moves. I guess she was watching an old Shirley Temple movie at the hospital earlier, she thinks the shoes are a special gift.

So Phil and Lily spent the night Thursday night because her treatment wasn't done until after 7 and we had to be back by 10am for the next one. Since she hadn't actually received a tube feeding either, we figured that was something best attempted under supervision the first time. They had been up since 3am, after a little pukefest , Lily decided she was up for the day. By 6 am Phil was dragging and was attempting to snooze. Lily kept asking him to play Barbies. Even when she feels really really bad, she likes to play Barbies. When she feels bad you merely have to hold the Ken doll- who is called Prince Elise(don't ask-he isn't allowed to wear clothes either- it doesn't matter how cold he is) and every now and again ask a question or say hi to the princess Barbie. So Phil has his eyes closed and asks Lily to let him rest a few more minutes and then he would play with her. And then he hears a beep and one of the nurses comes over the intercom- can I help you? She had pushed the call button-And then Lily's little voice "will YOU play Barbies with me?" And the next thing he knows is the aide is in the room asking if Ken has some clothes he could wear, he's getting cold....

Thursday, January 8, 2009

Poor sad lil monkey

Lily's G tube is healing well. Despite my best efforts, I was here for its first use. It wasn't bad. She has only had meds and pedialyte through it, but that all went well. The mitotane clogs it and they use coke(or other carbonated beverage of choice) to clear it out. The good news is that it only takes a few mLs then I get to drink the rest! We are experimenting with various liquids to see if any one works best with the mitotane. I have suggested they call st. Judes to see what their experience is. I may just have to make the call myself when I am not changing pull ups. Nasty toxic chemo funk gross leaky leading to entire bed change pull ups . And its not pee leakin people. The things we do for our little angels. We had 6 episodes between midnight and when the annoying little residents come around. Welcome to the Mallory zoo. I'm all for science and medicine and learning but the tube looks the same as it did yesterday and an hour ago and it will also look the same WHEN SHE WAKES UP! I think Phil worked magic when he was here, they don't wake her up anymore. But I apparently don't scare them, yet. She had a little fvr last night but it came down. Her white blood cell counts went up which is the appropriate response following surgery. She is still on morphine which makes for some interesting conversations. Last night swiper the fox was trying to swipe her kitten. We should go home tonight but its hard to say. We are a day behind so this weeks treatments won't be done until Saturday.
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Tuesday, January 6, 2009

At least SOMEONE can sleep at the hospital...

Lily and I didn't sleep much last night, but Bella spent a good portion of her time at the hospital snoozin on the chair earlier that day.
Last night once the good meds wore off, Lily got uncomfortable and all we could get was tylenol which didn't do much. That's what I get for letting a resident make decisions. This morning I had the nurse page the surgeon and she Ok'd the heavy duty meds which made our day a little better. I'm not Ok with Lily hurting and neither was she. I think I may have actually growled at one of the aides when they came in to take vitals. Hopefully they thought I was snoring.....She was up on and off all night wimpering. It was tough. I think at one point the nurse and I exchanged a teary glance, although I forgot my glasses and my eyes were working overtime to keep my contacts happy...yeah that's it. She usually fell asleep again before the nurse got there to see her in pain, so it took quite awhile to get her pain managed. Plus we were on the fence if it was pain pain or gas pain because she let out a bit of a rumbly from her tumbly and that seemed to have brought relief for awhile. After all this is pretty new territory for us.
Miss Julie made Lily a special teddy who has a new "button" like Lily. That's what we call the access portion of the feeding tube. It looks like a quarter size button with a snap top lid. Lily got to clean it and put medicine in her teddy's. Then we had to clean Lily's button, and she was exceedingly brave for how tender it must have been. It kinda reminds me of cleaning around a newborn's belly button with a Q-tip. Similar concept if you think about it, really. Tonight Phil will be there for the first feeding lesson. Did I mention the Ick factor??? I know it will help when she starts throwing up again. She did eat a little on her own today and was doing pretty good taking her meds orally. And since she isn't a newborn, we don't have to pull back stomach contents- is it bad that that was the highlight of my day? That's completely untrue- I got a huge hug and snuggles as I was leaving. THAT was definitely the highlight. Plus Miss Julie always gets huge smiles from Lily, and it's nice to see them, even if they aren't directed at us!

Monday, January 5, 2009

Counting is overrated

Phil was nice enough to inform me that next cycle is not halfway, we will be half way when the 4th cycle is complete. I mean technically we can't possibly assess halfway until we are done and look back but really who's counting? Me. 4 is half of 8 so when we get TO cycle 4, we are half Way.

Lily is resting following her tube placement. She was pretty mad and uncomfortable following the surgery but we got her pain managed.

While I was in recovery with lily, Phil read up on the feeding tube. "it isn't as easy as I thought it would be". What About direct access to stomach contents sounds easy? There is cleaning and twisting and flushing involved. I about gagged when he read me the part about pulling out some of the stomach contents into the syringe...really? Haven't I seen enough of those? The ick factor has been elevated to heeby Jeeby. All in all she is doing well except she just informed me she's hungry and she can't eat until tomorrow .
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Sunday, January 4, 2009

Food groups

SO as I am logging in, Bella as usual must be up in my lap. She starts touching things and the next thing I know- my blogger log in is in malaysian. I unfortunately do not read or speak malaysian, and of course could not decipher which was inglese but did manage to find an Italian setting that made it easier to find the english version. Always entertaining.

Phil and Lily have just checked into hotel Tripler. Except that he was told to go directly to the ward and not to worry about checking in at admissions and when he gets up to the ward, they send him back down to admissions. Fun Stuff. In 3 weeks, we will be half way through treatment. Yeah.

It was "nice" having a little "break". We've actually had about 4 days with NO throwing up. Lily's been eating really well, although Phil is very disturbed that she no longer likes ketchup. Ketchup is a food group in the Mallory household. Plus it's so nutritious- it says so right on the bottle- full of antioxidants and flavonoids or something. Phillip pours it over his fries, Bella eats it with a spoon. We buy the industrial size at Sam's Club. We've had non-ketchup loving friends buy a special bottle for when we came to dinner(now that's friendship!) and not the nasty hunts kind- Heinz all the way. So Phil "made" lunch yesterday while I was at the commissary- I was delayed walking by the first actual exercise in months- and the mongrels were threatening mutiny. He did what any good dad would do- went to McDonald's. He gives her a healthy dollup for her fries(which she no longer likes!?! :( ), much to Lily's dismay " I DON'T LIKE KETCHUP!" I think his heart may have stopped. I no more than exit the vehicle upon my arrival home and am greeted by " Did you know that Lily no longer LIKES ketchup?" Yeah. She had been refusing it in the hospital, but hasn't really eaten much so I didn't notice until last week. She was eating dinner and some ketchup got on her fork and she made me lick it off. This is worse than when Phillip declared he didn't like chocolate chip cookies.

So on and off, Lily has been deficient in Potassium. One of those necessary salts, which due to the vomiting are out of whack. We have tried drops. They taste HORRIBLE. As bad as iron. There is not good way to mask it- she identified it in every beverage I put it in. We asked for pills. The pills are bigger than the monstrous pre-natal vitamins you have to take when you're preggers. Buuuut- we can chop them up and she now can swallow them. So my mom did research while she was here and found us a list of foods high in potassium, since Lily was eating better. The problem is, when she eats her levels normalize- it's the in between times. But you do know what is high in potassium, Ketchup. No not really- I made that up. Tomatoes are though but she won't eat those either- potatoes- oranges, etc. So I spent a lot of time perusing the shelves to find the foods highest in potassium. Do you know what has the highest? Potato chips. Now there's a treatment Lily can deal with.

Little liar

The other day I caught Lily doing something she wasn't supposed to be doing. I don't even remember what it was, it was fairly insignificant. So I ask " did you do that?" She gives me a flat out "no" but she gets the same twinkle in her eye that her brother and dad get when they try to lie and slowly a smile starts to creep in...." you little liar, I saw you do it!" I tell her. "No" she blurts out defiantly " I'm not a little liar, I'm a BIG liar!" So there you have it.

Thursday, January 1, 2009

New Years Hawaiian Style

The first New Years Eve we spent here in Hawaii, we were warned about one of the biggest traditions on the island- firework mayhem. 4th of July in any major city does not hold a candle to the poppin bangin flashing screachin craziness that ensues on December 31st. On any holiday you usually hear some sets of fireworks, but after Christmas the celebration gradually builds until the New Year. As Hawaii is a cultural melting pot, the Chinese tradition of lighting fireworks to scare away bad spirits and bring luck for the new year is one that stuck. We were hardly prepared for it. I'm not talkin spinners and roman candles and a few bottle rockets...I'm talking hundreds to thousands of dollars of fireworks, per family. From dusk on, the island is blanketed in smoke and the sounds are what you might imagine a night in Baghdad might be like.

Yesterday was a busy day of running errands and clinic appointments. Lil's counts are still good. After talking with our surgeon, the decision has been made to do a gastronomy tube as opposed to a juju tube, as I like to call it. Apparently that tube gets misplaced or pulled out a lot and Dr. E said that especially in a 3 year old(who does not like to wear clothing) we would spend a lot of time in and out of procedures placing and replacing the tube. So we are going to give the gastro tube a shot and hope that it will get foods and meds into her without her continuing to throw them up all the time.

Phillip was hanging with the Turner boys and as the girls and I returned home, Kiera wanted to know why he got to have all the fun. Mind you we had just gotten her a new DS game, she got to spend her xmas money AND we went to lunch...but apparently Phillip was having all the fun. That's my Kiera. We always have a quiet night at home for New Years. The one year we planned to go out, we got all dressed up and our sitter stood us up- we had so much fun playing yahtzee and other games that we declared every New Years from then on, family game night. Fast forward to Kiera complaining about her lackage of I decide to take her to the Turners for an hour of swimming and socializing and then we'd come home. Bella was crashed out on the couch and Phil was working on the computer so he volunteered to stay with her. Since Lily's counts were high- I thought she might enjoy a quick dip in the pool. Phil didn't think it was a good idea- so I called Carrie to get her professional opinion- knowing as the co-owner of the pool, nurse, mom and lover of Lily, that she would be honest about Lil's best interests. She said the pool was clean, not too many people were there yet and it was a go for Lily swimming. So off we went. 5 minutes after getting there- Lily was swimming and splashing and having the time of her life, so it was worth it! It was her first "public" outing in awhile and it was so much fun to see her hanging with all the big kids. Before I knew it she was goin down the water slide and chattering like crazy. Close to dinner time she was getting cold so we had to declare the pool closed for the night to get her out. The big kids went about their business playing with fireworks and sorting poppers. I'm telling you.. it's a different ballgame here! We grabbed some of Aunty Carrie's famous BBQ, Lily had 3 1/2 helpings of baked beans- I was worried about the fireworks THAT would lead to- but so far not too bad! We came home to set off our 6 spinners and couple of boxes of sparklers and conclude with game night. I probably should be a little more superstitious and consider buying my weight in fireworks for luck, but as our luck would have it - I'd set the house on fire or blow an arm off and really that doesn't seem like it would make our year any easier.

We return home to Bella already freaking out about the fireworks. She does not like fireworks. Birthday candles send her off in a tizzy- add a big bang and she loses her mind. She spent the next 2 hours jumping down from my lap and running inside, coming back and repeating the process. We finally put a movie on for her- extra loud. I was impressed at what pyromaniacs the other 2 had become in the past year. I guess when you've been cut open twice and poked repeatedly- a sparkler and spinners aren't nearly as frightening. I was worried about all the smoke- knowing we will all be coughing and snuffly for the next few days and the streets will be littered with paper fragments, so we called it a night at 8. By 830 the girls were bathed and out. By 9, I was questioning my endurance. Phil kindly pointed out it was New Year's in Colorado and I could go to bed...Yeah! I did miss game night, but he was just as happy practicing his guitar solos. Plus, my wake up call comes at 5 ,regardless. I mean I guess that technically is midnight somewhere! Happy New Year!

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)