Thursday, October 30, 2008

Not So Normal Halloween Spooks.

Phillip and Kiera are at the age where they truly enjoy scaring others. Fortunately their "peer" group at home are 2 and 3 years old- a lot easier to scare. They usually resort to jumping out at the little ones or just chasing them. until recently a mask alone could send Bella into a screaming terrified frenzy. Today Phillip was chasing Lily around with a flashlight that is shaped like a skeleton's hand yelling " I'm gonna put a tumor in your belly!" Does it get any scarier than that?

Tiggerrrrrific !

Ironically enough......Today was the big Halloween parade at pre-school. Lily has been telling everyone from grandmas, to mailmen, to the entire medical staff at TAMC that she is going to be a purple fairy for Halloween. It started back in August or September when the costumes first appeared in stores. When you live on an island, that's what you do- shop months ahead of time- if you want it, you grab it. Lily found a purple fairy dress and purple wings to match. She was allowed to wear it around the house when we got home, then it was put into hiding until the big event. She wanted to put on her purple fairy dress for the past 2 parties we went to, but neither one was a costume party, so I have been telling her to wait for the preschool parade. Today was the day.

I rummage through my closet trying to find her costume. I lay it on the bed and hop into the shower. She and Bella are downstairs catching today's episode of Dora. I am half way through shampooing( which is step 1) when I hear the screaming " My puuuurpoh Fairwey! I want it on I want it on!" She wrangles it on, runs downstairs, comes back and is hopping up and down "I don't want to wear my purpoh fairwey. I DON'T LIKE IT!" That's what I get for planning ahead. My neighbor waits until the last possible second to make her daughter's costume because her mind changes from day to day. I see why. I hop out of the shower, wrap a towel on and we begin to have a discussion about what is wrong with the purple fairy. After 10 minutes of questions, all I could gather was that she did not like it. So we go through the dress up trunk...nope, no, uh-uh. don't want it. They dress up ALL the time, there has got to be something. I have, in storage, Phillip's old tigger costume that fit her 2 years ago. It's a long shot, but we bumble out to the garage and I open the container marked "masks, misc." She sees the Tigger costume and starts bouncing, flouncing, trouncing, pouncing, fun fun fun fun fun! As I pull it out, she spots the Pooh costume I got for her 2 years ago, but it didn't fit and we had to resort to Tigger. 'MOM! Pooh can be POOH! Oh bother, why didn't I think of THAT!!?!

Apparently 3 year olds change their minds a lot, as no one asked what happened to the purple fairy. That or Tigger was such a perfect fit, no one could remember otherwise. It was a bit of a stretch, the costume. It barely comes to her knees. Fortunately, I made it for Phillip 6 years ago(has it really been that long??) who is also known as torso-boy,Pancreas boy's mild mannered alter ego. One of her friend's mom says that she has a Pooh costume that would fit Lily perfectly( as opposed to the high-water Tigger get-up?). We acquire it after school and She's been wearing Pooh since we got home. I have a feeling we won't know until tomorrow what she'll be trick-or-treating in. Phil chastised me for not considering the miniature flight suit or darth vader from Phillip's closet. At least we have more options for tomorrow.

Wednesday, October 29, 2008

Bouncey as ever!

I've been talking with Lily's Surgeon and Oncologist the past few days. The surgery is on for the 6th. The oncologists are aiming to start chemo sometime in the week or so following the surgery.

Yesterday Keola came to visit with his mom. The little rascals were running around like maniacs and finally stopped to take a breather. Lily plops down next to Ola's mom, grabs a piece of her jugular and asks "Is this a tumor?" It's a common theme the past few days- anything that protrudes- "is this a tumor?" Constant vigilance, and Lily's on board- unfortunately she is now a complete tumorchondriac. I guess when you grow 2 aggressive tumors at one time, you are allowed a free pass at hypochondriacal behavior for ...well forever. She then proceeds to somersault around the living room and I am pretty sure that was one of the activities not recommended for at least 4 weeks following major abdominal surgery.

Today, we went to a Halloween party that had everything just short of the pony rides. In Hawaii, no function is complete without a bounce house. The second Lily sees it- she gallops over, hops inside and bounces like she's TIGGER, which TOTALLY makes sense since Pooh is her best bud. With each bounce I can actually feel my heart stopping until she pops up with a huge grin. Fortunately there were crafts and toys and plenty of distractions to lure her away from the bounce house. As soon as Bella needed a hug, or a drink, or was actually sent in by Lily to distract me, she(Lily) would hop back into the bounce zone. I can just invision me explaining it to the ER doc, it couldn't have been the flips in the bouncy house- it must have been the somersaults yesterday...

Tuesday, October 28, 2008


Hinakuluiau is the Hawaiian Goddess of Rain. As Phil left for work this morning he said "what is up with this weather?" So I thought I needed to look into the Hawaiian Goddess of rain and see maybe if she has something to do with it. Well- I have yet to find anything at all about her other than she is in fact the Goddess of Rain, but that won't keep me from giving my theory. Can you tell I'm totally avoiding cleaning???

Hinakuluiau is aware of the crisis Miss Lily is in and is rendering her support. Most people say- ugh it's raining. It rarely rains out here in E Beach. It has been very overcast and rainy since Lily was diagnosed. Also, Lily still has weeks until she can swim and unfortunately she will have to get a permanent IV and will not be able to swim until after that comes out- which would be after the courses of chemo. Not great when you live in Hawaii. But Hinakuluiau is aware of this and is reminding us that rain serves a purpose- if for nothing more than to bring us a rainbow. Although it may rain for months, we gotta hang in there for the Rainbow.

Monday, October 27, 2008

Little Hair

So this morning I walked the kids to school and then walked over to the local Fantastic Sam's and got a quick hack job. I did have a picture I took in and what I walked out with looked nothing like it. I've seen this stylist before and she was very attentive and did a good job, so either the haircut just doesn't suit me or she was distracted. It's short. Not Buddha short. not yet. If I keep snipping at it, that might be my only resolve. But here's the thing- it'll grow back. No it's not the best look for me- I can't say it either plays up or down my round face- it is just blah. Did I sit in the bathroom and cry like when I was 5 and swore I wanted short hair and my mother delivered a cute Dorothy Hamill style- nope. I grab a pair of scissors and fix the parts I don't like to the best of my ability and deal with the more important issues at hand. Like groceries and snuggling with the girls, who just seem to need it today. Do I cringe every time I walk by the mirror- sure ,but I can't say that's the hairdo's fault, entirely.

How is this about Lily you ask? Well, in my infinite wisdom, I thought if I cut my hair off, she would be willing to get a haircut and the next hospital stay would be less painful in that aspect. We were plagued with a matting problem that just can't be resolved without a good soak and aprroximately 3 conditioners. Also we decided last night that we will do the chemotherapy. It's still scary as hell and I've decided that immersing myself in all that could go wrong is not necessarily the best approach. We have got to focus on all that's going to go right.
I walk in the house and she smiles at me and says- 'I want little hair too.' Bingo. Not little hair like mine mind you- but like Phillip's she says. I hope this doesn't end in a fit because I'm not sure I'm up for the annhialation of her self image quite yet. Lily is known state wide for her curls which perfectly fit her personality. We get to the kiddie salon, she hops up in the taxi cab chair and politely tells the stylist, 'I would like little hair please.' I explain why we need shorter hair and the girl is a gem, she tells how every month they head down to the children's hospital and cut the kids' hair. She takes about an inch and a half of curls off all the way around, and quietly puts some in an envelope for me. The entire time Lily is batting her eyelashes at her mirror image, make faces and giggling. When we're done she picks out a cute crochet beanie hat , which will come in handy later and proudly exclaims 'I like my little hair". It looks exactly like it did a year ago. I still don't like MY little hair, but it's gonna be easier to maintain in the next few months and that's the important thing.

Sunday, October 26, 2008

Lots o Punkins Get Tumors

Today was the last day for the pumpkin patch. I guess that makes sense since Friday is Halloween. Good thing I was on the ball this year and procured the kids' costumes early. Of course it was raining today. What's a little rain and mud among friends? The kids actually prefer it. We never escape the punkin patch without a good thick coat of red dirt anyhow.

Last year the punkins were warty- this year they had an inordinate number of tumors. You would eye what looked like a perfectly round pumpkin, only to roll it over....hmm tumors. It's not that I'm tumorist or anything....actually that is completely untrue- I am anti-tumor to the very fiber of my being. If they leave me alone- I will leave them alone- you get all up in my family and I will lay the smack down. That being said- the polls currently have chemotherapy leading by about 6 points. Not sure when election day is, but we'll let you know when the final votes come in.
Lily was the 1st to find her punkin- the older kids were holding out for bigger ones. She brought Pooh along and everyone was completely and utterly distracted by finding the perfect pumpkin for Pooh. Except for Bella who was completely and utterly distracted by getting as dirty as possible. She did everything except lay down and roll in it. Lily was perched in the wagon and Phillip and Kiera would race down row after row, run back and present her with their wares. Too sqwooshy, too icky, too pokey... and then we found it...THE pumpkin for Pooh. I guess we will all be able to rest better tonight knowing that Pooh has the perfect pumpkin. I don't remember who found it, and really it's irrelevant, the point is that it was found and the joy it brought Miss Lily and her siblings was priceless.

Saturday, October 25, 2008

I love Lily...the picture book.

Phillip and Kiera are faring pretty well so far through all this. So many of you have been so generous and sent gifts for them as well as Lily and we all appreciate it. Phillip talks to me and asks tons of questions about what is going on. My favorite story from a neighbor was that on the day after Lily's surgery he was out back riding his scooter and she asked him how Lil was doing. He said "pretty good. They had to take a tumor out. I only had a bruise on my pancreas and I had to stay at the hospital a week, she'll probably have to stay like a month."
Kiera on the other hand usually pretends not to be too concerned and definitely won't talk about it. I've taken her to have her nails done, had some girly hair braiding time, and tried all kinds of things to see how she's doin- but she doesn't budge. The day we went into surgery she came down with the sniffles, then she sprouted a heat rash on her face, and now teeth are loose and she has bug bites. She transforms into her old self when friends are over, so we try and keep things hoppin here for her. Tonight we are going to start a scrapbooking project together while the boys go to the football game. Plus it gives me a reason not to clean. I have been wanting to make Lily's Pooh book for ages since he goes everywhere with us, but Then I had a thought- with another hospital visit coming up- it would be nice for Lily to have a book with pictures and nice words from those who love her. If you would like to participate, here's what I need:
A picture of you/your family (4x6 or smaller) and something handwritten and signed (5x5 or smaller). It can be as simple as I love Lily- she loves seeing her name! The album pages are top load 6x6- if you are crafty/scrapbooky feel free to make your own and I can just put it in the book- otherwise you can email me a photo or send the wishes by snail mail to us. 91-1135 Kaiee St., Ewa Beach, HI 96706

Friday, October 24, 2008

Genetic Counseling

Lily has taken up boxing. She also enjoys baseball. Both are on Wii and I have to guess which one she wants to play based on a charade like game of either punching or swinging. Always good in the post operative period. I guess it's better than her boxing her siblings or trying to keep her off the swingset. She's doing very well and hasn't even been taking tylenol or motrin. She has also gotten used to everyone wanting to see her owie and is proud to show it, so I thought I'd give you a peek!

If there have ever been genes in need of therapy- they're hanging out in my pool. As I was casually chatting with a leading ACC research doc at St. Jude's (it's OK to be impressed by my resourcefulness..I learned from the best) , about 85 people kept beeping in. A short while later I was trying to prioritize my call back list. A message from the Tripler surgical secretary hit the top of the list. She informs me that she just talked with my husband and we are scheduled for the 20th of November. But Dr. Edwards said the 1st week in November for surgery....oh no no no this is with the Genetic Counselor. Ahh yes the one who is to get to the bottom of my dysfunctional gene pool. That should be interesting!

Phil takes the 3 .kids who have the greatest probability of sitting still to see the latest High School Musical flick while Bella and I simultaneously continue research and returning calls. Oh yes, we are also keeping our new full grown sheep dog company. Fortunately Walter requires less attention than Bella and also has fewer accidents on the carpet. He is stuffed. He arrived this afternoon in a box that was as tall as Lily and almost as heavy. There must have been a slight mix up though at the post office, because Walter was packed with two special wine glasses for Phil and I- yet the wine was missing? My postman is very reliable so it must have happened on the other end .

Thursday, October 23, 2008

A New Normal and a Big Decision

Daily Report: No date yet for surgery, still early November. Chemo therapy is recommended. Leg Sarcoma looks Aggressive.

Knowing that in our not so distant future, what we now know as normal is going to be a thing of the past...we are trying to be "normal". So when Lily wants a cupcake and a chocolate chip cookie followed by a chaser of chocolate milk for breakfast...we have to be good parents and ensure under all definitions of fairness that Phillip, Kiera, and Bella also get nothing but junk for breakfast. No, I am not going to make eggs, you will eat this cookie and like it. Phillip, a realist (like his mom) looks at me....really I can have a cupcake? Big picture people, big picture. Skinny has never been in my deck of cards and I've already passed along a predisposition for much damage is a cupcake gonna do? So once the whole clan was good and hyped up on sugar, I was about to make my exit to Walmart and leave Phil to try and control the reverberations. Like I would let them eat nothing but sugar for breakfast under my watch.

I have my bag, my list, and 1 foot out the door when the Lily monkey grabs my leg...I wanna go with you mommy. That's not a horrible idea, the point of the trip is to get a booster seat that doesn't rub her owie. So 20 minutes later, she is dressed, has pooh, nee-nee(blanky) and we are ready to go. I am returning phone calls on the way to and from the store as Lily nods off. We are pulling into the garage when she asks if we can go see Maggie, her very best preschool bud. I tell her she's lucky cuz daddy and I have to go to the doctor so Maggie is coming over to visit with her mommy. That appeases her. She struts inside and immediately reports to Phil 'You and mom have to go to the doctor. I am staying here. I am NOT going with you.' Can't blame her on that one. Last night Phil finally convinced her that we could cut off the ankle bracelet from the hospital because we were home. She shows me a naked ankle and says 'we'll put my bracelet on after my bath.' I told her we didn't need it at home and she had a look of complete panic 'but I don't want owies, my bracelet says Lily Mallory No Owies'. Poor thing.

So Phil and I had our first and probably last 'date' for months. The ambiance was a bit sterile, somewhat outdated and from what I've heard the food...not so much. We walked through the doors and were immediately shown to our table...a very short table. With 4 very short chairs. The sign on the door reads Pediatric Oncology Waiting Room. Fortunately there are adult size arm chairs and a sofa- so I sit there to save my back. Phil wants to make a point and squats down into a chair designed for a 3 year old. Not sure what point that is, but he's makin it with style. The chief of pediatric oncology joins us and plops into another pint size seating apparatus. The Solidarity of Men. Since there is no real good starting point, do we have any questions? I flip open my notebook and start firing away. What kind of sarcoma? When do we find out? How does it affect the surgery and further treatment? As far as the Stage 3 ACC, could the cells be an artifact from resection or slide preparation? Could chemo effectively combat both tumors? I had quite a few questions stemming from a lot of questions people have asked me that I didn't have the answers to. Many of the questions don't have answers.

Here's what we know: The samples from the adrenal are definitely adrenocortical carcinoma. The tumor was 9x8x6 cm and weighed 253 grams. For reference :A can of chicken noodle soup weighs 298 grams. The cancer cells were seen on the slide going through the capsule, so we have to assume there are some stragglers hangin out in Miss Lily's belly. We don't want that to be the case, but it's the best position to assume for treatment- irrelevant to the position we feel like we're in which is somewhere between a rock and a block of concrete. The leg tumor is a sarcoma and looks to be aggressive, but was unidentifiable merely under the microscope so it has been sent away to be identified. The BEST treatment for both is surgery. Got that partially tackled. I am confident that Doc E got all of the tumor around the adrenal that was humanly and somewhat microscopically visible. She will get as much of the leg sarcoma in November as she can. So where do we go from here? Chemotherapy is the best bet medically speaking. I don't like the idea of chemo or radiation. Both make you very sick. They kill good cells as well as bad. They have side effects that are worse than any flu bug or morning sickness I have experienced and on top of it you lose your hair. Not a big deal for Buddha, and I spend way too much on razor blades, but for miss fro baby whose pride and joy is her big hair-that's fairly traumatizing. Going back to big picture- Lily without hair, but still having Lily is a good result. Lily being sick for awhile and then kicking cancer's butt...very well worth it. Lily being in pain for a result that may or may not present itself-not a great thing. Lily losing her hearing, another possible side effect- pretty scary. Kidney failure- heck we just saved one from the adrenal cancer monger- to go and kill it off with chemicals is counter intuitive, but again- could save Lily. But it might not. But it could. She is tough. Kids are amazingly resillient. And it could still come back. And she could kick it's butt again.

Chemo with mitotane is standard treatment for this tumor. A slightly more aggressive approach is what they call a multi-agent protocol combining 3 other tried and true chemo agents which haven't necessarily been "proven effective" for this tumor. A clinical trial protocol if you will- in the comfort of tropical Hawaii. Realistically we would be looking at 8 months to a year of treatments translating to 3 days to a week inpatient at the hospital each month, if not more to treat side effects. I considered adding a poll to the blog"chemo-yes or no?"- but let's face it there are only 2 people who can make this decision and so Phil and I have a big weekend of info crunching and gut crunching ahead of us. So that's where we're at. Thoughts?

Wednesday, October 22, 2008

The C-word.

I see Phil told you. It was a very long day. Of Course they are all long in the hospital because for some reason they come in every 2 seconds to make sure the machines aren't beeping too much and that you are only slightly uncomfortable, not really really really uncomfortable. Day 1 and 2, things are pretty touch and go and you understand the vigilance- by day 3 if you aren't discharged, you start giving orders. No wonder floor nurses are grumpy- they have everyone ordering them around when they have seen more than doctors and patients combined. BUT on day 3, all compassion goes and you just want a little sleep(translated as more than 5 minutes before some alarm goes off).

Lily is a trip when they have to sedate her. Yesterday for the bone scan she sang the ABCs intermittantly and fought tooth and nail going to sleep. ABCD now I know QRSUV LMNO now I know...I think a horse probably could have been put down with less than it took. And really I don't know what Lily has against T, but we didn't hear it once. The anesthesiologist warned me that she would be very grumpy upon waking- which is a scary prospect considering she rarely wakes up in a good mood. She was finally out and I watched the bone scan. Since I have no experience in this type of scan, I tried to make my best predictions as her little bones came up on the screen. There were some "hot spots" which I expected because she is growing and the growth plates would incorporate the contrast...but by the time we were up to the waist I had to ask the tech- 'I know you can't tell me but are those normal growth plates.' He said so far it looked very normal. It's kinda like asking the mailman how much your electric bill is that month, but what the hell- they do this kinda thing all day they get a feel for what "normal" is even if no one in my family will ever fall into that category- they don't need to know that. Lily started kicking and screaming about 5 minutes after the bone scan was done and the only thing that would soothe her was me in a standing position with her wrapped around me. She's 40 pounds. 40 pounds is heavy after about 5 minutes. But here's the catch- no pressure on her right side and can't touch the right leg and approximately 3.5 feet of tubes tethering us to the monitors. She yanks off the blood pressure cuff and chucks it at Nurse Patti who is insanely upbeat. She starts telling Lily she has to put it on, leg or arm? I just look at her and shake my head, she immediately backs off. I understand how important it is to monitor this stuff after anesthesia. But seriously, she's kicking and screaming, her blood pressure is NOT low. I try sitting, I'm not a wimp- but I am good to no one if my back goes out. More kicking and screaming- back to standing-snoring, ok.

Sandy stops in to check on the little angel? who is drooling on my shoulder. She is about to go run(that pesky PT test is coming up and despite it's importance in monitoring the fitness of America's soldiers- it really creates this obsession and a bit of stress. Note to self: schedule next surgery AFTER PT test.) She is telling me that she will check back in afterwards... when Doc E comes into the room. F*#@! I know immediately by her face that we aren't getting the pony for Christmas(think analogy folks- I DO NOT want a pony). Dr. somethin or other from Oncology introduces himself. Our oncologist is out of town, but he will be working with us extensively as part of the "team". Dr E says, 'unfortunately the news is bad and bad'. Dude, not only are we NOT getting the Pony- did you have to shoot it in front of us? Ouch. ' It is Grade III....which means they saw cancer cells on the outside of the capsule and the leg lump was a sarcoma'. And the flood gates open...those of you who know me know I am fairly opposed to public displays of weakness aka crying. I'm pretty sure Sandy was holding me up, but again there is this nice fogginess that pops around you so it's foggy. The nice part about the oncologist was that he led off with 'lets make an appointment for Thursday or Friday so we can go over all of this". Yeah I can go back to swearing in my head while random thoughts pop in like "well we have to take her to Disney World" followed by crying, followed by "Lily is the kid that will show everyone how to beat this" followed by crying. I felt kinda bad for the doctors(briefly)- emotion clearly makes them uncomfortable and then they have to work extra hard to look comfortable because there's this scorecard in the military medical system that rates them on compassion and to be uncomfortable would definitely NOT be compassionate... I am serious about the scorecard, I don't just come up with this stuff. Dr. E starts addressing the sarcoma, "we will have to go in and take more tissue out to be safe, but I want her to have a good Halloween so let's schedule it for the first week in November if that's OK?" So I upgrade from leaking a little to sobbing, from here on out we will refer to it as being verclempt(sp?) That's 'perfect' actually, my mom will be here on a previously planned visit- everything happens for a reason.{ Kellie n Rick- I TOLD YOU TO HAVE A DESTINATION WEDDING IN HAWAII! } Plus, it'll be AFTER th PT test.
So we part ways with the downer doc types for the time being, Lily is starting to wake up and staggers around like she's had a few too many- which she has, and the hangover is gonna be BAD. She finally decides to sleep it off on the chair and I pack up the army of new friends and toys she's acquired and we get to go home. I will consider snippet blogging as we go to bring humorous events back on board cuz lets face it- too much black humor(dark not racial) could be a downer and we can't have that. Hugs to all, and as Grandma likes to say -It could be worse.

Tuesday, October 21, 2008

Good News and Bad News

This is Phil again. Jen is trying to get some WELL DESERVED rest.
The good news is that Lily made it home today! Four days after a fairly serious surgery. She is definitely a trooper. She's watching Cinderella III right now; I'm more of a purist- I only watch the original...
Okay, the bad news: The initial Pathology report came back positive for both the adrenal tumor and the small mass that the Doctors removed from her leg. The adrenal tumor is a stage 3 carcinoma and they found cancer cells on the outside of the tumor itself. The small mass on the leg, which everyone thought would be nothing, is some type of sarcoma. The Dr. thinks that they are not related.
So, the 1st week of November, Lily will undergo surgery again on her right leg. Shouldn't be nearly as major as last week, but since the mass turned out to be malignant, they have to go back and make sure that they get enough surrounding tissue to provide a 'clear margin.' The word chemotherapy came up today, but until we get the full pathology report (they are sending the samples somewhere on the mainland for further testing/verification), we won't know the exact course of treatment. We go back to Tripler on Thursday and should get some more information then.
Thanks again to everyone for their thoughts and prayers.

Monday, October 20, 2008

Guest Blog: "I Feel Better Now!"

This is new territory for me as I've never guest 'blogged' before and since Jen is a world class writer, I'm a little out of my league... But, here goes!

To pick up where Jen left off, I arrived at the pediatric ward around 1015. Lily was happy to see me and estatic to see that Bella had made the trip as well. Unfortunately, Bella wanted nothing to do with anything and she was ready to go home- "Hi Lily, Bye Lily." Nice reunion.

Anyway, the plan was for Jen to take a break (if you can call taking a shower a break...) and then comeback mid-afternoon for the graveyard shift. We figured we'd try one last time to get Lily to the playroom since she was still refusing to get up and move around; maybe Bella would provide the added incentive. NOPE! After giving up, Jen grabbed the keys and moved toward the door, Lily realized that the mothership was on the move and protested. The witty Jen Mallory countered with, "I'm just taking Bella to the playroom, you said you didn't want to go." Lily conceded and let Mom and Bella 'go to the playroom.'

For some reason, everytime the medical staff decides to poke, prod, etc. I am always on duty. This occasion was no different. The door had literally just shut after Jen's exit and in walks the anesthesiologist to remove the epidural which has been plastered on Lily with an epoxy of saran wrap and crazy glue and has had 4 days to bond with skin. We make it through that episode and in walks the 'Life Nurse.' I think that is what she is called, but basically her role is to make people do stuff they don't want to do- therefore, giving life. Interesting concept. The redeeming quality of the Life Nurse, or Terminator, is that she immediately becomes the bad cop and I'm no longer to blame. We get Lily into pajamas and slippers and actually force her to walk to the playroom. She is doing great although walking with a urine bag is slightly sporty... We make it to the playroom, walk inside, and Lily says, "Where is Mommy and Bella?" Wow, that white lie really bit us. Fortunately, the playroom is essentially a Toys-R-Us annex and all is well as Lily dives into playing.

The last hurdle of my shift was changing the dressing on the main line (the chest IV if you hadn't heard of it before). All I can say is that the experience was less than optimal, I think they used crazy glue, super glue, and a side of plumbers putty to make sure that one stuck; but we were rewarded with another stuffed animal and that made it worth it- at least for Lily.

So, I'm back in the home trenches with Phillip, Kiera, and Bella hoping that tomorrow Lily will come home. After walking around, Lily's attitude and health improved immensely, they took the foley catheter out and Lily and I actually walked outside of the hospital for the shift change with Mom. As Jen got out of the 'cadillac of mini-vans' (sounds tougher than mini-van), Lily proclaimed, "I feel better, now!"

Thank you to everyone for your thoughts and prayers!



Guest Blogger.

Monday October Something..20th maybe??

Oh the time warp of the hospital.....I mean -I see that it gets dark outside which means the progression of another day- but which day is it???? I initially typed in Saturday...and then recalled the 3 luxurious nights at Tripler Resort and Spa and can guesstimate it's Monday.

Lily is doing really really well. She got out of bed this morning which was monumental. It took bribes , but the important thing is that it happened. She's a little wobbly and very sore. They discontinued the epidural this morning, so this evening could be rough until we get the proper pain meds figured out. Tylenol and motrin are keeping the edge off now, but night time is always tougher. She has been an angel. She chants "I want to go home" and "I don't want owies" for every person that walks into the room. She has gotten used to lifting the sheet for complete strangers so I figure she'll probably get lots of kicks out of being a flasher later. She also repeatedly points out that her ankle bracelet says "lily mallory no owies" because when they admitted her that was the only way we could get her to put it on.

The actual epidural line/tube/whatchamajiggy should come out today and then the catheter. We have her bone scan tomorrow morning to make sure there is nothing there but bones. They will have to sedate her for it, but we should be able to come home after that provided she goes #2. Ahhh the ins and outs of the hospital life. We have not heard the pathology of the tumor yet, but will have a preliminary tomorrow before we get to come home.

She really loves her new game- 5 Monkeys on the Bed and has an army of stuffed friends that are keeping her company. She still refuses to wander down to the playroom, but hopefully dad can get her there. I stopped by home for a few minutes with the kids and I now must go shower as the miniature bath and shower we have in the room, doesn't quite cut it and although I feel funky- my stench doesn't seem to quite ward off anyone- so it serves no purpose. Phil will hopefully be guest blogging tonight...with pictures!

Friday, October 17, 2008

The rock is out.

The rock was successfully removed along with Lily's adrenal gland this morning. Around 11:30 Dr. E brought a covered bucket by the waiting room and in typical Connolly/Mallory fashion- we jumped up to see the thing that has caused so much distress. I'm not much of a fisher, don't care to eat them, smell them or see them- but I get the "I once caught a fish this big..." jokes. For us it is now- " I once saw a tumor this big.." and I hope it will be the last I have to see. It was about the size of a softball and I'm sure by tomorrow it could very well be the size of a watermelon...but 8 centimeters was definitely a guess on the small side. She got to keep her kidney and her liver. She is a true champ. She has about a 6 inch incision on her right side about an inch above her belly button along her ribcage. The lump in her leg also came out and Dr. E had no guesses as to what it was. But from what I hear guys dig scars- so she's got two good battle wounds. I will give the gory details down the road so I don't start blubbering in front of the kind nurses who let me sneak onto the internet... She will be in the ICU for a day or two and then a few more days in the peds unit. We are hopeful that Dr. E got all of it- it looked very well encapsulated- although my degree in pathology is still pending. We will not know the tumor type for a few days. Thanks again for the thoughts and prayers- they have made all the difference.

Thursday, October 16, 2008

Murphy and his laws....

We had a power outage the other night and my bud Murphy decided that we didn't have enough goin on and that he would toy with us a little. Phil is a night person and I am a morning person- well sort of, used to be- it's all fairly irrelevant when stress mucks up your sleep anyhow. He's been stayin up late and I usually end up waking up when he comes to bed, so I do my research and whatnot. So, I head downstairs and try to turn on the computer, nothing. I try this that- unplugging, replugging,monitor's on, printer's on, ugh. Lovely- I guess I'll have to resort to cleaning the house now. Phil checked it out yesterday when he got up and said the power somethin ma jiggy words words words- he took it in to have it checked out today. So we are without a computer right now.

Fortunately my neighbors are awesome and Ms. Shelley is keeping the lil cretins occupied while I fill you all in!

We had our pre-op yesterday which was papers papers and more papers. Lily had to have blood drawn so they can have her type ready tomorrow. Unfortunately that meant she had to have the hospital band on her ankle and she's supposed to keep it on til tomorrow. She can't get it wet and really wanted a bath last night so we did an anklet break. I managed to Jimmy it open and the mechanism is still in tact so we can put it on tomorrow and she won't have to get poked again. Even Phil was surprised at my complete rule breakage- but seriously- the child wanted a bath- It's gonna be awhile with a big belly incision before she can do it again and I know for a fact that he would have done the same thing eventually. He wanted to take her to the waterpark, but I sent him and the older two on so Lily can rest. She had school today and Ms. Chris said she practically fell asleep on her lap-poor lil monkey. So we are gonna take it easy while the big kids are off at the park!

We get up before dawn tomorrow and there is zero phone reception at the hospital so I will do my best to keep everyone informed. She is the first and only case for Dr. E tomorrow, but it could take all day. The other 3 are well cared for by neighbors and grandma Sandy will be spending the night with them tomorrow and Saturday so Phil and I can be with Lily. Hugs to all and thank you all for the support, we are really humbled by how wonderful everone has been.

I'll leave you with my conversation with Lily after pre-school today,

Lily: Mom, I'm gungry.
Mom: Ok, we'll get lunch at home.
Lily: I want McDonald's.
Mom: How about PBJ?
Lily: No, you say yes to me!
Mom: allrightythen- nuggets or hangaburger?

Monday, October 13, 2008

The Waiting Game and the Maze.

So first thing the next morning(Thurs), we had an appointment with the Pediatric Surgeon. Phil and I had both spent the night doing research on the internet. We had to periodically stop, because when you are looking at a one in a million tumor- the prognosis is not generally good. But Lily has everything going for her. She's young, she's healthy( if you discount the baseball sized tumor on her adrenal gland that is producing hormones), and although the tumor is big- we caught it before it started making her sick- which is something. As we sat in the waiting room, I did my standard waiting room drill-assigning illnesses to respective patients. A grandmother with her daughter and twin grandchildren kept looking at us, I guessed she was playing the same game so I smiled. She did not smile back, maybe not. They called us back for vitals, and since you usually have to go back to the waiting room, Phil waited with the bags. We have learned that any trip to Tripler required rations, entertainment and sometimes a change of clothes. After they check her out, we are directed to an exam room- so Lil and I head out to the waiting room to get Phil. As I walked through the door, the Grandma gave me THE look. The look that I frequently get from Kiera when she puts on her Fair and Equitable Police act. 'But they just GOT here.' Since I have the capacity to appreciate that everyone deals with stress different- I did not snap around to inform her if she had a baseball sized tumor, she'd get seen sooner too, because I'm sure whatever minor surgical procedure brought them there was producing a great deal of stress.

Doctor E comes in and immediately says "I am sorry to see you again, but I am glad you asked me about Lily". Me too. We go over the specifics of surgery and procedures and where we need to go from here. She would like a CAT scan and we would need a bone scan at some point to check for metastises. Both require contrast, so Lil would have to be sedated. And while we are sitting there it occurs to me- we need to call Sandy, Phil's step-mom. She works in the OR there at Tripler and it would really suck if Lil's name popped up on the schedule before we had the chance to talk to her. Dr. E offers to call her down , so we wait while she makes the call. It really pays to know one of the head OR nurses. After the news was delivered and a few tears wiped away, she immediately starts assembling the dream team for Dr. E. I have no idea of who is involved, but I am confident she will make it happen. Then we get a personal tour of the new Pediatric ICU, where Lil will get sedated for the scans and spend a couple days after surgery. We also have to go to Radiology, oceanside to get the contrast- which is actually just an order for contrast and we have to take it back to the pharmacy mountainside. Most hospitals are mazes, Tripler is like a personal exercise in navigational aptitude. This Pink Palace was built on the side of a mountain. There are 2 entrances- Oceanside and Mountainside- which only connect through designated walkways on the 2nd and 4th floors. And on top of it there are various wings that have been added as the need arose , also connected by lengthy walkways. There is no way I could explain how confusing it is- so you're gonna have to trust me on that. So we part ways with our personal tour guide and we are off to get Lily some ice cream with candy in it.

We get home and Phil is fervently searching for something online. I get called in to decode one of those letter jumbles when you order something online...what's he ordering? Football tickets. Lily needs to go to a football game he tells me. We all have our happy place- Phil's is football and I don't know whether to scream or laugh. Seriously- a three year old at a football game? Really? That sounds fun. But first we have to get through the CAT scan tomorrow.

Sunday, October 12, 2008

How We Found the Rock.

Lily was born pretty darn hairless. She had blonde little goofle-feathers as my mom would say. At a year, we wondered if she was going to get hair. And then she did. Great big furry, spirally curls. She calls it her BIG hair. When she looks at her baby pictures, she scrunches up her nose and asks Where's my big hair? When she turned 3, she started getting furry in other places. Places it's not polite to talk about. It started as a rogue hair or two, which prompted a trip to the pediatrician in May. He ran some blood tests, but after a little research wasn't too concerned- it was probably precocious puberty. That would explain the slight acne, but my dad and brother died from brain tumors- there could be something more to this. He assured me that we start at hormone levels and go from there. The hormones came back "normal". Really there was nothing to indicate further tests unless there was continued growth or other secondary characteristics.

I also pointed out a lump on her calf that I noticed the morning before Phillip bruised his pancreas(April). The same advice was given- if it gets bigger, red, more swollen...yada yada, bring her in and we'll run more tests. In September we had what was to be our last visit with Dr. E, the pediatric surgeon who followed Phillip through his case of traumatic hemorragic pancreatitis. Unfortunately his ultrasound showed no decrease in the dilation of his pancreatic duct and she wanted him followed by the pediatric endocrinologist to make sure his enzymes and blood sugars were all normal. They pretty much are. His blood sugar runs a little high- but he lost about 50% of function in his we just keep an eye on him. Anyhoo- I asked Dr. E about Furry Lily, since I trusted her opinion. She immediately referred us to Dr. P who is the same pediatric endocrinologist seeing Phillip. She looked up the blood tests on Lily- they were not normal for a 3 year old little girl, the testosterone was too high. We needed to run more tests. She suspected a genetic condition called Congenital Adrenal Hyperplasia indicating a malfunctioning adrenal gland. Three weeks later we found out the blood tests did not support this, so it was time to look at the organ in question. We traipsed down to the radiology department for the ultrasound. Phillip had tagged along so Dr. P could see how he was doing. The U/S technician looked at our name, then at Phillip. "Hey- is he Pancreas Boy?" Yes, flying into hospitals everywhere is the action figure known as 'Pancreas Boy.' He immediately turns some insane shade of red and busies himself throwing paper airplanes around the room. Lily makes me lay down next to her, her "fro" effectively blocking any view of the screen. Although I am not a radiologist, I sometimes play one on TV- so therefore I like to look at my children's innards in cases like this. Sure it looks like random blobs- but you pick up on clues like- why so much time on that blob? You ask key questions like- is that the adrenal gland/kidney/whatever organ might be shaped like that particular blob. The key is in the response. If they respond- No that's the such and such- you're good- if they pause and say something like- No, that's NEAR the liver- well pretty much plan on being there for awhile. And when the honest to goodness radiologist pops in to introduce themselves- realize you will probably be getting to know the staff at the institution intimately. So we finally finish and are on our way back to talk to Dr. P- who now has a posse of 3 with her. Yep. This is not good. I supply Phillip and Lily with toys and snacks and hope to God that the day-to-day obliviousness and selective deafness they like to employ are on full force. Dr. P begins,

Lily has approximately an 8 cm tumor on her adrenal gland. There are two possibilities. It could be an adrenal cortical adenoma which is benign, or an adrenal cortical carcinoma........

I immediately grab my folder and start looking for a pen. One of the residents grabs a pen and says he can write it down for me. Oh really- you were gonna write down "G*& D&^% Mother F#@! Son of B&%$! because that was kinda what I was thinking. Pardon my language. Weird things pop into your head when they tell you your child has a tumor. Fortunately they were explaining what benign and malignant meant so I had some mental time to swear some more. Lily and Phillip were happily tossing the doctor's toys into the air to see who could actually get admitted to the ER first....Oh they are looking at me. Hmm I think someone asked a question and darnit I've been nodding this whole time swearing in my head. Sh#@. Fortunately they just wanted to know if they could do a physical exam. SO for another half hour or so it was words words words. I spent 4 years in college getting a degree in genetics- I knew all this- so I'll let them ramble on about Li-Fraumeni syndrome like Li and his bud Fraumeni hadn't been over to dinner once or twice in my not so distant past. OK not literally- but they discovered the link between the p53 and hereditary cancers. Their work and my family history was one of the reasons I wanted to become a genetic counselor back in the day- instead I decided that procreating was a more pressing occupation and here I am. Ugh. Words words words, appointments, surgery, yada yada, someone will call us to schedule, please call at any time. Great. We can leave. The pediatric Oncologist and her posse split to start the research, and Dr. P looks at me. Don't make eye contact- you are successfully holding yourself together......So I guess Mr. Mallory is gonna get quite the call at work huh? I laughed- allright we'll keep you- you have a sense of humor. We banter about something- could not for the life of me tell you what and I managed to get the kids to the car. I can do this- I can drive home. I'll leave Phil a message at work to call me- he will call when he can. I take a deep breath- the airman at the front desk answers and a voice that sounds nothing like me shakily asks for Buddha. I'm not religious or anything - that's what they call him. He's debriefing- she says- I'll go and get him... NO, I cut her off, Just have him call as soon as he's done. I spend a few minutes trying to collect myself, and we start home. Phil calls and asks if everything is Ok. I blurt out LILY HAS A TUMOR. Where are You? On the way home I tell him. I'm on my way. I hang up. Phillip says "Is something really wrong with Lily?" So I tell him with the air of- really it's a little thing in her belly and it has to come out so she doesn't get sick. The look in his eyes conveys the terror- I reach back and squeeze his hand. It's gonna be OK buddy, she's gonna be fine.

It's not a tooma, it's a rock.

So the battle has begun again. Many do not know the sordid past of my tumor history or this particular part of my sense of humor. I personally have not had a tumor. And I don't really find them particularly funny. But sometimes you have to step outside and laugh a little and so tumor humor was born. I did not invent tumor humor- but I was raised by it. You have to deal with the hand you are given- even if you have to trade a few cards in along the way- you are still stuck with your basic hand. My basic hand was riddled with tumors. My dad and all of his siblings have or had cancer at least once- and only 2 of them are around to tell their stories. My brother and cousin both died from cancer in childhood. As my uncle recently informed me- you are allowed certain leeways when you are the oldest surviving member in the "dead zone". Tumor humor is one of those things. You make jokes because you have to, because the days are long enough- you need to laugh to get through. If you aren't ready for that- I suggest perusing something a little more benign(puns count...) like a blog about the weather. I'm sure if my grandmother had better sight and any knowledge of what computers can do- she would have a kickin blog about the weather- she can tell you down to the degree the weather anywhere she has ever lived or where anyone she has ever known currently lives or has lived. But this blog is gonna be about Lily, and her tumor which as she says" it's not a tooma, it's a rock in my belly."

Lily Kay Monkey

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