Tuesday, November 24, 2009

Calendar Girl

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

                    She even signed a copy for us!

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

Monday, November 23, 2009

What a Difference a Year Makes

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

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

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

Friday, November 20, 2009

Got Panda?

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

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

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

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

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

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

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

Monday, November 9, 2009

Am I 4 or am I 8?

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

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

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

Lily Kay Monkey

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