Thursday, April 30, 2009

Isn't it ironic?

We got a new bottle for the mitotane last time. It's all square- look at me I'm the space saving model. I line up better, I wish all my compadres were square.

So I check out the bottle. The notices on all of Lily's meds- take with food, keep away from children, and chemotherapy. Take with food, hmm, yeah. That with the chemo label- talk about oxymoron. I thoroughly can't get enough of the "keep away from children". It's required on all medications, soaps, anything that if ingested in great quantities will kill you- like chemotherapy. We dedicated a corner of the counter to our pharmacy. My friend Tracey laughs that no mattter the ailment- I'm like- Whatcha need? Tylenol? Benadryl? Band-aids? Gauze?Chemotherapy? No I don't share Rx meds- just the OTC ones. But they all share a spot. I don't even use that counter to prepare food any more, just Lily's meds. I'm looking forward to a few weeks from now when I can reclaim that space and the space on the upstairs counter where we prepare her tube feeds. Mostly I just think of all the junk that was there before and wonder why I didn't purge it earlier.

I am also hoping that these blog entries will become fewer, and so I would like to put cancer unrelated stories back on my adventures in potty training blog. We'll see- it all intertwines. There are so many issues we will face still. Hopefully it will just be the adrenal insufficiency and getting back to normal, and not more toomas.

I have recently had contact with a couple of ladies whose kiddos survived this cancer. Both have been labelled as "cured". A few weeks back I started searching for survivors. I found 2. One of the moms, Buffy Krajewski- wrote a book called An Angel's Kiss that details her journey through this beast- over 10 years ago when literally they had not seen this cancer in children- and they discovered her son's tumor before he was born. I spent some time reading her story and found a kindred spirit and glimmer of hope. If you are interested you can find it on I also found that the war is not won, the battlefield just changes. She linked me up with her best friend whose daughter was diagnosed similar to Lily's circumstances and she is now a thriving teen. They have an online support group of which I became the 8th member. It is not a particularly active group, as working parents- who has the time? One mom wrote on her daughters blog an appeal to her friends to help me because she just can't. And I understand COMPLETELY. The intellectual scientist in me is mad- I want to know, I want to know her road, what helps, what doesn't- I want to compile data. But the mom, the survivor in me understands. I understand that just hearing of Lily's circumstance puts her back in a personal hell. You put things down deep so you can move on. I know.

After Bob, Dad, and Eric died- there was a trend in Hollywood with Brain tumors. Sure I could joke daily that my mere forgetfullness was a tumor- but I didn't set it to sad music and use it to kill off a beloved character or milk the emotions of a generation looking for a cause. I had already felt it. I hated when they pulled it out as a surprise, shock value. Shortly after Lily was diagnosed, we rented Bucket List. I thought it was like Grumpy Old Men- I fortunately had a particularly rough day and opted for bed instead of the movie. My husband watched it,gave me extra hugs that night and told me he already put it back in the mailbox. I then rented the Express because I was being thoughful and thought the boys would enjoy a good football inspirational film- my husband looks at me- You know he dies of cancer right? In the same tone he asked 15 years ago when I asked him to see Titanic- You know it sinks right? Ok- I have been subjected to a lot of sports center, espn the magazine and the channel- but how would I KNOW this? SO we have been sticking to comedies. Which brings me to my next rant. It's a subject that Buffy mentioned directly in her book that I have felt repeatedly- yet I had never been able to materialize. It's like the cancer movies- you have people(like me) who avoid them. Some because they have felt it first hand and a) don't want to relive it or b) are annoyed at the dramatic license and sensationalism of it or c)just prefer to live in their happy place. Then you have people who watch them over and over either to cling to a memory, or feel something they have been lucky enough to be spared.

When dealing with cancer, you find the same kind of reactions. You have people who flock to your side, support you because they know you and love you and would do anything for you- they would watch the movie for you. You also have those who do it for themselves. So they can tell anyone they know about your case to get the sympathy reaction. You have friends who disappear because they prefer to find their happy place. The type of person who tells you they are praying for you and know that they relished the opportunity to tell their prayer group about you not so they can add you to their prayers, but so they are in the spotlight. They embrace their need for attention more than the opportunity to embrace the good that the power of prayer has. I have learned that this kind of person will never know that they are this kind of person. If you stop to wonder if you are this person- you probably aren't. I actively eliminate this kind of person from my life.

After Lily was diagnosed I had so many people tell me- I had NO idea you had so much cancer in your life. My good friends know because many of them lived through it with me- or were by my side long enough to see one of those times the scab is inadvertently ripped off and there you are raw and bleeding. After my loss- I volunteered in a peds cancer ward, not to continuously rip open the wound, because I was still raw enough to want to make a difference. After time, life gets back to "normal" and that period of time that seemed to define you becomes a very real part of you that nobody can see unless you want them to. There are people who live off of the wound, using it to fill a void that the cancer left. There are those who use it to give their life a new direction and become champions of the cause. There are those who go on and cherish the ability to merely, go on. Sometimes the strength it takes to let the wound heal is greater than the energy it takes to keep picking at it. Isn't that ironic?

In a few months Lil's hair will be back, and hopefully we'll have the side effects(psychological and physical) managed. Her scars will be hidden by clothing, which she will choose to wear or not. But they will always be a part of her, of us. The scars will forever mark all of us. Whether we acknowledge them or not.

Monday, April 27, 2009

Nothing to report....

How awesome is that? Phil and I spent most of the weekend cleaning out the kids' rooms. 3 bags to Goodwill, 4 bags and miscellaneous items distributed to friends, 2 for the hospital playroom and a full garbage can outside. Full -as in my husband jumping up and down in it- human trash compactor style to get us through to trash day. My husband is the supreme purger. Not as in anorexia or bulimia- as in get rid of it. I go through and try to organize- he gets rid of and even though I know where every stuffed animal came from- which toy that tiny piece goes to- approximately how often each thing gets played with-he does not care and gets rid of it. I am finally in the place to let him and not have to worry about it. It's less to pick up and clean. Really he's just thinking of me and still trying to break me of my pack-ratishness.

Lily is feeling good. Now I am starting to read up on where we go from here. We are also starting to make plans. We are going to plan a party for when Lily finishes Mitotane. We are starting to plan our Make a Wish trip to Disney. This week I have started working on potty training again. Last week I was blogging and Bella was painting on the floor beside me. She usually fills a cup with water and just sprawls out. Out of the corner of my eye, I see her over by the fridge- I assume she's getting more water- she then takes her cup and chucks it into the sink. It is then that I notice she is naked. As you all know- nudity is nothing new in my house- but we require pull-ups or underwear for health code reasons. "Where are your pants?" I ask- almost afraid of the answer- "over there" she replies. OK. "Why do you not have them ON?" Because I peed. "Where did you pee?" In the cup. Gag. "You did not!" Uh-huh, I peed in the cup and put it in the sink. She looks proud, then confused that I am not congratulating her on this. We have a talk whilest I bleachith.

These are days that I know I am not paid enough. I toss the cup and start bleaching the sink- fortunately she picked a day I had actually done the dishes or we'd be down a sink full of dishes too. This is the day I decided that the insanity must stop. That it is time for my 3 year old and my 4 year old to be potty trained. When Phillip was little- I was still in the "my child is gonna be the best ever at everything" mode. I was convinced he would be potty trained by 2 and reading by 3. Then I got pregnant with Kiera. I realized that the age of potty training was not a direct indicator of later success in life. He was 2.5 before I started and was done right around 3- literally just in time for preschool. Kiera was the one who everyone told me would potty train herself- girls were easier than boys. I started when she was 2 and we did not "finish" until she was 3 and was just about to go to preschool. I am convinced the only reason she decided to potty train was because I gave up and feigned complete disinterest. I learned that when a child is ready, they are ready. With Lily- I let her decide when she was ready. We had our moments- but she was ready because she wanted to school. It was around this time I started introducing the concept to Bella. Since it was just her and me on Tuesday and Thursday mornings, she liked the attention and she was making great strides. I figured that children would do it when they were ready and usually they were ready around 3, and she would be the little sprite that proved me wrong. Because let's face it- their whole purpose in life is to keep me on my toes. And then we discovered Lily's cancer. Not only did Bella's potty training take a back seat- Lily's training was unravelling by the week.

So here we are. Peein in cups an that's not even at the hospital. For the record- Bella has not ever seen anyone pee in a cup- so I have no clue where she got the bright idea- all I know is that in her little mind- it seemed perfectly logical as opposed to walking 10 steps to the bathroom. And part of me was secretly glad it wasn't on the carpet- even if it cost me a cup and some time bleaching. We discussed behavior modification and today the only beverage available to pull up wearers is water- you want the kool aid- you gotta wear the underwear. And this will be my week, and it almost seems like a vacation. Almost. Crazy.

Saturday, April 25, 2009

We Did It! We Did It! We Did It- Yeah!

Yesterday was by far the best day we've had in the hospital. Treatment lasted a couple of hours, Lily was in a good mood- we brought lunch for the staff and then we came home. When the doc popped in to see Lily- she said they don't have to see her until next Friday. Wow- that's a whole week. Whatever will we do with ourselves if I'm not running to clinic every 3 days? I might be able to gradually work back in some things like exercise and showering daily. How exciting!

When I say Lily was in a good mood, you must realize that means more peaks than valleys, or that the valleys are shallow and peaks are high. There was a new car on the ward and Lily spent much of her prep time zooming up and down the hall. At one point an elderly volunteer in a motorized cart thingy came up to the ward and Lily tried to race him. Her nurse and I thought it was flippin hysterical, he did not. I think she may have won too if he hadn't cut her off at the nurses station.

I got to snuggle with her for the entire treatment time. This is one of my favorite parts of the whole process. If you have to go through it, I highly recommend it, it is so choice. Nothing beats snuggling with happy Lily for over an hour with her periodically saying "I love you mama!" and of course "where's daddy?" and "I want granma berta". By the time the meds start coursing through her system, you can see happy Lily fade and know she feels icky. I sigh and know that this is the last one. If only for now, we are done with this phase.

All of her "friends" start milling about. Rumors of free food spread fast in the hospital! I am chasing Bella who discovered the new car. Phil is hanging with Lily, she has a pile of spaghetti in front of her and is too busy eating to bother with manners and greeting people as they swing by her room. 2 of our favorite nurses from downstairs hop in and try to get a giggle out of her and a hug. No deal. Their usefulness would be limited to procuring more spaghetti. But they really want a hug from the Lily monster. They bounce around the room hugging random objects, hoping to get her to submit...she refuses she tells them flat out to stop hugging her balloons and her toys- you don't hug those. Well, Lily, what CAN we hug? They think they have her. They think they are going to get their way....YOU can hug Daddy! Fortunately we are a huggy family or that could have been awkward!

Thursday, April 23, 2009

The way she was....

I miss her every day and she's right in front of me. She is a silhouette of the child she once was. I get glimpses if her quirkiness, shadowed by the ogre she can be. We don't know if it's the meds, the chemicals, the hormones or lack thereof. Is she tired, nauseous, spoiled, or unhappy. I have not been through what her little body is wracked with, I do not know. I am a coach. Most days I feel like acting out the way she does. I want to be the one screaming that it's not fair. And then the damned voice in my head over and over- life's not fair. Deal with it. I am so trying to deal with it. I try to be a good friend and listen about other children acting out. I don't want to be the person who thinks they are worse off than anyone else. I listen when I am told she has changed, she used to be sweet and now there's a nasty streak. Like I haven't noticed. The assumption is that I must not notice, or else I would have done something about it. I listen when I am told things will have to get back to normal and we will not be able to let her get away with how she's acting. Like it doesn't frustrate me. Like I don't spend half my days reasoning with her, correcting her, redirecting, disciplining, helping her. The other half is spent cleaning, caring, helping, redirecting, disciplining, reasoning with the other 3. We stay home many times because we don't want the public display. I lament that I don't hear from half of my friends because I know they don't want to bother me. I am saddened that good friends' lives have gone on around me and I don't have a clue what's going on with them. It's a strange feeling to know you have an amazing support system and at the same time feel so alone.

I remember being the mom that everyone raved about how good my kids were. I remember them listening and not talking back, at least in public. I remember facing the challenges at home, so they would behave in public. I marched them out of rooms and out of parties when they acted like fools. Then I was so strapped for time and energy, I began to pick my battles. That is where it went wrong. I couldn't physically be the parent I wanted to be. You make due. I sacrifice exercise, personal hygiene, and health because there just aren't enough hours in the day. My personal time is sitting here, trying to sort my feelings so I don't explode. I am the parent with the screaming child in line at the drug store, putting my foot down- all the while being judged for being too harsh because that screaming child is a cancer patient. You have the nurses and specialists at the hospital refuse to say goodbye because they know you will probably be back. Maybe not next month, or next year, but you will be back. And you hope they are wrong- you would love to prove everyone wrong- but you prepare yourself for both cases and try to find the happy medium.

Lily was the child everyone got a kick out of. She walked into a room and it lit up- she lit it up. I am sorry for those who were not able to experience, because it was something else. She challenged me in ways that I knew once I got over the rage- I was going to be laughing about whatever she did that time for YEARS. Her personality was like a little incarnation of my dad- just something people were drawn to. She wasn't sick when we started this process- so everyone in the hospital got to know her. And I think they miss her too. They keep popping around, even for just a glimpse of it. And we all pay the price, when she turns on a dime and we hope that it's the meds and that we will get to see the amazing personality again. I resent being told that I won't be able to treat her like she's special. I know plenty of people who go through life acting like they are the definition of special and they haven't done a darned thing to deserve it. You get to listen to parents hoping it's just a "phase", because they apparently are doing everything right. I know this is a phase- I just have no clue what the next phase will be. We are living in phases. All I can hope is that they be true to themselves. I want my kids to excel in school, be great at sports, or what ever they love. I want them to live. Sometimes life stalls. Sometimes you have to get out and give it a push. Sometimes you are the good samaritan and help by giving someone else a push. Sometimes you need a push. Sometime a push in the right direction is ponying up an putting a positive spin on a pity party.

I'm gonna try to look at it as a new beginning. A reshaping of our family. A second chance. I am going to try and remember the way she was with fond memories and embrace who she will become. The road is bumpy, like the dozens of special beads she has collected, but there are smooth beads too. This period in our lives will someday be a memory, a hurdle and I am grateful just to know that we can clear it. The next hurdle might be bigger, might be smaller...all I know is that if I can't clear it- I may just have to push the darned thing over and keep going.

Wednesday, April 22, 2009

It's my Party and I'll Cry if I want to!

Yesterday Julie mentioned she would like to throw a Sundae party for Lily. It was to be referred to as the "I love Lily" party. We had an extensive discussion of how Lily is a special case and it wasn't a good idea to have a "Good bye" party or "we're done" party since it would be hard to say when we will truly be "done". Lily had been looking forward to her party all morning, as it was planned for after lunch. Around lunch time, Lily fell asleep. Everyone on the ward knows- you don't wake a sleeping Lily. She finally woke up and was in her typical sunshiney mood(read in sarcastic tone). I don't know if I have mentioned that Lily will now sometimes wear clothes. Not a lot- but if we have a public outing to someplace other than the hospital- she will wear clothes. When she started wearing clothes again, she decided she didn't like tags. She would systematically bring me items of clothing to remove tags and then go throw them back in her room. The Dora robe remained tagged until last week. Then on one visit to the clinic- it had to go. Well she woke up this afternoon and needed the tag back on the robe. We made a makeshift tag from tape which momnetarily pacified the beast. She then wanted to ride in the stroller to the party. Mind you the party was in the playroom. Across the hall. Literally five steps away. Queen of Sheba comes to mind. She makes her "entrance" and proceeds to erupt into an emotional puddle of goo. Not in the good "you love me, you really love me" kinda way either. She wants mommy to help, no daddy, no mommy, don't look at her- I don't want ice cream, I want strawberries, not 6 strawberries, 3 strawberries- no put those 3 back in I want them now- She plops down on the floor and is pathetically sobbing. I, being confronted with such behavior daily- pick a seat across the room, snap a picture when her eyes are clamped shut- and wait. Moving in too soon only causes more screaming. Various staff members give it the good ol college try- much to the same result- Lily crying. She finally agrees to a sundae. She throws everything on it and says- I don't want this- I want to play a game, I don't want you to play - no don't leave I want you to play with me...... aaaaaaaaaaaaaaaaaaaaaaagggggggggggghhhhhhhhhhhh! Pediatric chemo is like the terrible 2's on crack.

Meanwhile her oncologist, psychologist, endocrinologist, and cardiologist are all watching her saying - I don't really think this is my area- what do YOU think? I don't think it's hormones- it's probably chemo- well we can't really tell until she's off of chemo- so let's wait and see...aaahhh the infamous let's wait and see. I LOVE it when the shrink looks at you shrugs and says- I really don't think there's anything I can do here.

I've found that the best thing to do is give her space and she cools down. Tough thing to do when she's the guest of honor. There is much chatter about how Lily is the only child they've seen who loves to be the center of attention -until she is the center of attention. She finally loosened up and enjoyed herself a bit and then we loaded her back up in the stroller and walked the 5 steps back to our room. A few minutes later, she wants to go for a walk. We end up pushing the stroller in case she gets tired- but she walks all the way outside to get some sunshine. We usually pick flowers, and today we found a big bird of paradise that doubled as a walking stick for much of the walk back to the room where it became a weapon and Bella defended herself by pulling it's "hair" out. That concluded our visit for the afternoon.

Phil and Lily made it home in time for dinner. Technically we are on "pass" and go back in first thing in the morning. I guess we wait and see.

Monday, April 20, 2009

Into the thick of it...

We have officially been in every room on the right side of the Tripler pediatric Ward. This time it's the Jungle room -conveniently located next to the ice machine and right across the hall from the playroom. It is complete with an elephant, frogs, lizards, and yes a monkey. Apparently another frog jumped off the wall and into Lily's belly- so now there are 2. I see many years of therapy in all of our futures. I also noticed a big Stargazer Lily on the wall. One of my favorites and the one I chose to carry on my wedding day. There are so many varieties of lilies and their meanings range from purity to abundance to wealth to a new beginning. There are also new signs on the ward. All watermarked with lily pads and their purple flowers. Coincidence?

Today we started cycle 8 of chemotherapy. This will be the final inpatient round of chemotherapy. We are cautiously optimistic. Some days dragged on forever, yet I can hardly believe that 6 months ago we were a regular family with average problems. Now I guess we are the regular family with the above average problems. From June on, we try to get back our life. Life that has alternately rushed on past us and held deathly still. You go through the motions, waiting, hoping for an end in sight. And now we can see it. We're not quite there, but we can see it. We will try to potty train, again. We will try to instill in our children the values and ethics that will serve them well in life. A life that we will always secretly pray they get to live to the fullest. We will try not to take anything for granted, but we will. And I will celebrate being able to take things for granted, again. Showering daily, sleeping nightly, and exercising on more than one occasion a month. I will worry immensely when any of my children is sick, forever. As any mother does. But part of me deep down will be relieved as common illnesses pass , proving nothing else is wrong. I will put away the binders logging the shots, and the transfusions, the blood counts and procedures. I will only pull it out for major appointments, instead of filing papers away weekly. I will start using the word survivor and leave the word patient to be used as an adjective, not a noun. I want this to be the battle that won the war, but realize there may be battles yet to be fought. So for now, we will celebrate. We will celebrate finishing this battle. We will celebrate an amazing 4 year old who has endured so much. And then we will go back to the jungle that we call life and cherish the day to day stuff that won't seem so mundane after all.

Sunday, April 19, 2009

Bella's Birthday

It was a weekend of birthdays. Each kid had friends' birthdays to attend Saturday and we had a "quiet" dinner and cake party planned for Bella and Jackie who share their birthday. Lily woke up not feeling well and Phil and I set to work trying to get everything in order while I secretly wondered who would get Tripler duty later that evening. Her head hurt, her frog was biting her, she just generally was in a bad place. I repeatedly took her temp- 99.3, debated whether or not to call the on call doc, while assembling cakes and making dips and picking up the house. I even managed to sit and hold Lily when asked and Bella, after all it was her birthday party day. I was really debating Lily's status when our friends started arriving and she immediately perked up. I don't know if it was the tylenol kicking in, an extra dose of hydrocortisone or Pono and Maggie being here but she got up and played and even danced outside.

Bella has been waiting for weeks for her big day. Since all of us Mallory girls have spring birthdays- it makes for a busy couple of months. The kids know the order -Lily, mommy, Kiera, Bella. Each one knows when theirs is next. Bella has been proudly stating- Bella's abby dabby birfday next! She found birthday packages left out back by the postman early this week and Lily told Bella it was her birthday so they took it upon themselves to open the presents while I was upstairs. Every day since then has been her birthday, according to Bella.

It was a good evening with good friends and good music. There was dancing and limbo-ing and only 1 Mallory child was injured in the process. Kiera, in an unfortunate wrestling mishap broke her "ring" toe. We skipped the ER and used our combined medical prowess to fix her up at home. Bella was so excited to open the rest of her presents, she even opened Jackie's presents for her. She outlasted the rest of the kiddos and finally crashed a few minutes ago. Now it's my turn...if Lily is sick we'll have to delay treatment, but we won't know until tomorrow.

Saturday, April 18, 2009


Lily had her Audiology appointment followed by her Echo yesterday. I had some prescriptions to pick up, so Phil was going to meet us on his lunch hour to help out. Traffic was light, we arrived early AND there was a parking spot. Dare I hope for a good day? As we walked by the pharmacy, there were only 2 people waiting and 5 windows open...WOW! This could be the day that rejuvenates my faith in the pharmacy. I pull a ticket, and there is only 1 person ahead of me. My computer assigned estimated wait time: 2 minutes. You always multiply that by 5- so 10 minutes- that would put me right down to the wire for making Lily's appointment- but Phil is on his way. 2 windows close- no need to panic, I'm next up. Until.... 2 active duty guys take tickets- that bumps me to #3 and with 3 windows open- it's time to take a seat- my plan just blew up in my face. Lily is dancing and being silly and drops her bucket of toys. As she bends down to pick them up- she , well how do I put this- passes a bit o wind. She giggles "that was me! I farted!" The now busy waiting area is smattered with giggles. The giggling subsides as the stench wafts to them. Taco bell and chemo meds do not mix my friends. But this week's food of choice is tacos. Last week was baked beans, the week before spaghetti. Flatulence has been rampant. I am hoping and hoping that Phil parks on this side of the hospital- I look at my watch- it's been 20 minutes- we are officially 8 minutes late for the appointment- is it time to just go and start over later......but then I see Phil hurrying past- he grabs Lily and they go to her appointment. I forgot to call in one refill- "we don't DO same day refills, you'll have to pick it up tomorrow" AAAAAAAAAAAAAGH. 15 minutes later I finally get the meds and go to meet Phil and Lily.

Her hearing is Ok, no decrease this time, a little improvement in one range. Amy says this can be due to her focus, last time she wasn't concentrating so we'll just have to see, we won't probably see improvement after treatment and it can get worse- but maybe her loss wasn't as bad last week- she just lost focus. Either way loss can continue for up to a year. After the test Lily has to have ear molds made for her hearing aids. I figured that was what the ENT appointment was for- "oh no" she tells me- "all they do is look at her ears and officially say she can have hearing aids." But can't you do that? "you would think, but this is how tricare wants it". red tape anyone? SO we had to wait a month for an appointment we will have next week so a guy can look in her ears and say- yep- those are ears, they are a good place to put hearing aids- and then we come back and order the aids? pretty much. Allrightythen.

So she gets this pink silicone goo and squirts it into Lily's ear. I figure Lily will freak out, but she doesn't...until Amy does the second ear. It itches, she can't hear, she doesn't like it...Amy laughs at how of all the things she has to go through- she is so dramatic about the little things. True. She ultra dramatic about the big ones, but she's allowed, for now. Phil finally distracts Lily while the silicone dries and Amy writes up the report. Although we don't want her hearing to decrease- we wouldn't be bummed if we had to decrease the dose of nasty chemicals. She looks at herself in the mirror and laughs hysterically. She gets to roll around a piece of the silicone goo to make a bouncy ball when it's dry. All of a sudden she looks at me and yells "MOM! how can I put my nee nee in there?" and points to the pink goo sticking out of her ear- you can't. At this point she's done. She starts yelling because not only is she hard of hearing- her ears are now plugged- "Where did SHE go??" I tell her Amy will be right back. " I want this OUT! Where is SHE?" One of the assistants is kind enough to introduce herself and extricate the now hardened goo from Lily's ears. They probably deal with this all the time. Amy explains to Phil kinda how the hearing aids will work and that she should have fairly normal hearing recovery with the aids. I chase Lily around and we finally read a book about an elephant who needs hearing aids. I look at the clock- oh we are sooooo late for her echo...time to go.

We go down to clinic and Lily marches right in like she owns the joint. It's fairly quiet on Friday afternoon, so Lily yells for the people she wants. She finds Dr. P and climbs up on his lap and tells him all about the goo in her ears. Dr. S comes to get her for her echo and she is in goofy form, all giggly and tickly. Her heart looks good. Great news. Miss Flo calls in yet another favor for us to the onc pharmacy- we plead with her for more than a week's supply... I am soooo over the pharmacy.. she milks a month's worth for us. Have I mentioned how much we LOVE Florence?? So that concludes another session of Lily's protocol. ON to cycle 8!!

Wednesday, April 15, 2009

maintenance fees..

We went to clinic together the other day. I am on like day 25 of this cold and no end in sight...I've tried everything....I may have to resort to ..going to the doctor as a friend non chalantly caught herself reccommending. It is a reasonable suggestion. I just don't have the energy to call make an appointment, find childcare and then have a doc say uh-huh 5 times , it's a cold go home , rest drink fluids, yadda yadda. Rest has become an improbablity, I've drank so many fluids I have actually sprung a leak on a couple of occasions of heavy coughing- I've had 4 kids- gimme a I do my best self- diagnosis and medicate from the home pharmacy.

After Lily is accessed, we leave her bundled so we can change her G-tube button. It's time, when we unhook the extension it leaks stomach contents. Ummmm tasty. I refuse to do it. The nurse I have been calling Teresa, comes in and tackles it. It was quick, I have no clue about painless though- Lily screamed like she was being disemboweled- which she kinda was. So there's this little balloon that is on the tip- when you deflate that- the tube pulls right out- you shove a lubed up tube back in the opening, inflate the ball and it's done. When Flo talks to her, it sounds like Drizza- maybe she is getting my cold. Phil and I have an extensive whispered conversation when they leave the room as to what her name really is- it could go either way here in Hawaii... Lily's counts are good. No more shots until after next treatment. Depending on how her hearing is, the last treatment may be shorter on days 1 and 2. We go in tomorrow to check on her ears and her heart, so we shall see.

Monday, April 13, 2009

A Shot for Good Friends....

I am so lucky to have a reservoir of good friends. I married my best friend and even when we are "off," there's no one else I'd rather have by my side. The past few months have been the most incredible strain on us individually, together and as a family. So many things have changed and I know we will never be normal again. We will get to a point where we can fake it pretty well though.

We usually have ham for Easter. It's one of those things that when I mention it -everyone groans, yet they love it and especially love the sandwiches the next few days. I ran to the commissary Friday and grabbed groceries and was halfway through the line when I realized that I forgot the ham. But then Phil comes home from work with a fresh supply of chicken that one of the guys made especially for really was a Good Friday. Chicken for Easter it was! I can't express how much the dinners have helped- It is just one less thing to have to worry about. Friends have prepared a whole weeks worth of meals- or done grocery shopping- or just shown up on the doorstep with food. It rocks. And I personally blame all of you for my weight gain!

I don't know where I would be without my inner circle of friends. Last night and the night before Phil had to work. Lily doesn't like for me to give her shots. That doesn't break my heart- it's a crappy thing to have to do. What's better yet is that I can call my friend Carrie and say- I need help with Lily's shot and she appears minutes later and actually gives her the shot. It's a tough routine and it's taken a toll on us. For 10-14 of the 21 days, "we" have to give her shots. By we, I mean Phil. Phil gave her the first few and that set a precedent for Lily- daddy gives the shots. I know it's extremely tough on Phil although he doesn't let it show. There is kicking and screaming and panic by Lily . I don't blame her- these shots hurt. But the benefit outweighs the owie. She usually asks around 630 or 7pm if she has to get a shot tonight. When she asks, I tell her yes and then try to distract her for a few minutes until Phil gets it ready. Then I hold her and he gives her the shot. She knows we have to do it. It doesn't make it any easier. On nights that he works late, I have to employ more active distraction- or just make other plans. You know you are in the inner circle when you get the call to hold Lily so I can giver her a shot. The other night Phil gave her the shot and she hops down from my lap and says "Thank you daddy". As I picked up the pieces of my heart, I am ready to be done with this. The best is when her counts start rebounding and we don't have to give them. Those nights I look forward to when she asks if she has to get a shot tonight, cause we get to say no and we all do a little cheer. I am keeping my fingers crossed tonight might be one of those nights.

Sunday, April 12, 2009

Hoppy Easter!

Yesterday we managed to frost cookies and paint eggs. That's MAJOR productivity in the Mallory house! Bella's got a cold and preferred to snuggle on the couch, but the other 3 really got into it.
She perked up this morning.

Egg dying was quick and to the point this year. I think Lily was seeing how many she could drop and from how high...our devilled eggs will be very festive this year. Kiera Used her fingers to avoid droppage and was rewarded fingers. Due to a Easter care package from Gma - Phillip thinks he's going to be a professional bubble blower. He did blow one yesterday that was as big as his nugget and popped it before Lily got to it.

Kiera was first up this morning and was rewarded with being sole hunter of inside eggs...there weren't many, but the ones there were- were a melty mess of dye and I was about to put them back in the fridge when she hopped downstairs. Kiera had a major sleepwalking episode last night and came downstairs looking for something- I played along and handed her nothing - which was apparently "not it!" and she stormed back upstairs. When I asked her about it this morning she looked at me like I was crazy- so subject dropped...When the other rascals awoke- it was a race in the back yard....and then the breakfast of champions.... Happy Easter!

Saturday, April 11, 2009

Kleenex moment..

I just finished giving Lily her meds and asked for a big hug. She gave me a big smile and a big hug, I went to go and she squeezed me harder. Talk about warm fuzzy. Then she started burrowing into my shoulder, I smile and look down as she turns her face to me and gives me one of the wickedest lil grins. She wasn't burrowing- she was wiping her nose on me.

What did yeeewww saaaayyyyyy?

So Lil's hearing is really getting bad. The folks at the park were talking about how they found a blackberry and had a helluva time finding it's owner. There was no call log and few phone numbers listed. They finally reached her son who informed them that she is deaf and mostly uses the phone for text and email. Wow. And I thought it was a great way to blog from the hospital and look up random words docs use so I look like I'm in the know.....yea technology!

Two of Lily's entourage were following her around at clinic and kept talking to her and she never responded. One finally looked at me- she's really in a grumpy mood today isn't she? No, not really I said- she can't hear you- there's too much going on here- I yell "LLLLILLYYY!" she turns right around. Both nurses roll their eyes- we should know better, I guess you just hope that she's just ignoring you. Yeah, I know. I played that game for months. One more week until she gets her appointment about hearing aids. Her speech is really suffering lately- I could blame my head cold- but I usually have to ask her mutliple times to repeat herself. At dinner we cover our mouths and whisper things or make sounds that are in the frequencies she can't hear- sometimes she catches on and laughs at us- other times she doesn't. Yep that's the excitement in the Mallory household. As one of my neighbors kindly pointed out- at least she can go to state funded preschool next year. The short bus might even pick her up. Am I allowed to call it that? I mean it is shorter in relation to the longer buses. And yet I think- how big of a kick will she get out of riding the bus 6 blocks? The things you have to do these days to get to ride the bus to school.

Aaron's Relay for Life

I just found out that Lily's Uncle Aaron is doing the Relay for Life in honor of Sandy's and Lily's battles with cancer as part of a community service project at West Point. I remember in elementary school every year doing fundraisers for St. Jude's - usually in hopes that our class would get a pizza party but then nearly being brought to tears at slide shows of sick kids my own age. And then my own family was touched by cancer, smacked with cancer, full nelson half something or othered with cancer. Every bit makes a difference and the good part is that everyone has a different cause. Which is a good thing cause there are lots of them out there.

I had a long conversation with Lily's doc about finishing treatment and cancer in general and she said although huge strides are being made- she just doesn't see a cure anytime soon. Some view cancer and disease as natural selection, some as punishment for past discretions- smoking, drinking, etc- some view it as population control. I won't get into my heavy views on that right now-but do know that with all the knowledge out there- I would love to see a cure happen. Many cancers that killed people 10-15 years ago are completely treatable and some cureable. There are strides being made that make treatment more tolerable. As I called the trial study doc (was that really 6 months ago???)at St. Jude's I couldn't help but think of the little boxes we used to put pennies in at St. Joan of Arc because we believed those pennies would help-maybe get a pizza party- maybe one day help treat a kid who went on to be a doc who made a difference. Maybe Lily will be that doc, maybe it will be one of the little army of angels who I know are praying for her each night . If for nothing more than to spare their children what they've seen her go through these past 6 months.

On that light and toasty note- Thanks again to all who have prayed, who have brought dinners(or week's worth of dinners!) and goodie bags, gifts, donations, or left anonymous packages on our doorstep. We appreciate it all. So many of you have been the daily inspiration we have needed to get to this point. I will never be able to properly thank you- many I've never even met who have tried to make this journey a little more comfortable for us.

Link for Aarons relay......donations welcomed and appreciated....

Wednesday, April 8, 2009

......six degrees of hospitalization.....

I hugged Lily and she felt warm this morning. We had her bi weekly check up anyhow so I didn't take her temp. I focused on getting everyone ready and didn't argue when she didn't want to put clothes on. This could mean a couple of things. She probably is getting my cold- and unfortunately she's on the downslope of counts so it could be an ugly week. She doesn't wear clothes when she feels yucky. It could be the meds, it could be something else.

There was minimal traffic and we get into clinic ahead of schedule- this of course is because Phil is in the car with me. If he was not, traffic would have been heinous. Phil is with me because on Monday I got a call from Florence- I don't like it when they call me. It's never to just say hi, or see how it's going- it's you need to take Lily here and do this or we need to adjust this and this OR the lab had a mix up with the blood samples and we will have to redraw Phillip and Bella's blood. Bloody perfect. That was such a fun experience to begin with. I can tell that Florence has the same thoughts as me since she suggests we might do them separately this time. OR we could punch Phillip in the nose, drip it into the tubey thingy and send it off which might actually be less traumatic for everyone involved. Phil could help with Bella today before work- so we set that up. Friday the kids have off school, so I could probably bring Phillip along then.

So we get Lily accessed. Florence had been chasing her around the clinic with the ear thermometer because I told her that Lily was a little warm this morning. Florence does not manage to get a temp until after Lily was bundled and accessed and has calmed down. It's 100.3. At 100.4 we get an automatic trip upstairs for a minimum of 48 hours. She unwraps Lily, lets her sit for awhile and retakes it. Down to 99.8. Phew. So more like 0.6 degrees of hospitalization... Again, only because Phil was there. If I was on my own it would have been 100.5 and I'd be chasing Bella around the ward right now instead of making dinner. Multitasking...amazing stuff. The doc comes in and Flo gives him the report. He laughs- her temp wasn't high because she gets all worked up about accessing was it? Good, he is not exercising his option in conservative treatment and sending us up. So I ask "You don't happen to be on call tonight?" He looks at his pager- Yep. Oh man I groan. He looks wounded- "no it's not you, it's that of the 3 middle of the night calls I've had to make- you've always been the one on call- that doesn't bode well for either one of our evenings." She'll be fine he says, uh huh- we can keep our fingers crossed.

So now it's Bella's turn. She has gathered that the patch in her arm means she has to get a "shots". I place her on the table and she lays down and puts out her little arm. I am proud of how she is handling it and my heart twinges at the same knowing that somehow in her little world this is "normal". She puts her little hand in Phils and Lily pokes her head in to get a closer view. She is all about sharing the pokes. Florence is mid blood draw when Bella picks up her head and looks at her arm- her head thuds back to the table and for a second I swear she is gonna pass out. She starts to panic, but it's over. She wasn't bundled and I didn't do more than hold her legs when she started to panic. That's one tough little monkey. Phil and I lament that we did not tape it as instructional material for young Phips.

So Good News and Bad News. Lily's MRI and CT scans all came back good- no evidence of disease either metastasis or new. Good. Her blood plasma level of mitotane is no where near what it needs to be so we have to increase her dose. She is at 750 mg, and we have to up it to 1 gram. 2 pills instead of 1.5. The biggest problem- by increasing dose over 750 mg we increase chances of worse side effects- neuropathy, nausea, all the fun stuff. Phil says- it's working- why increase it?I give him the antibiotic analogy- after 24 hours on antibiotics- you feel better- if you stop taking it- the infection comes back. He tells me - I get THAT, but how do they know that dose is where it needs to be? And that my friend is why we are in what they refer to as a trial study. They don't know how these doses affect kids- they have some adult data- but kids and adults are vastly different beings. So this means the next few months won't be as easy breezy(insert sarcastic tone as appropriate) as we had hoped. We will have to watch her more closely for side effects and cross our fingers there aren't any and that it's gone and won't come back.

Monday, April 6, 2009

Sunday Drive

My throat was still hurting and the house was a mess, so what else was there to do but abandon ship and go for a Sunday drive. I packed up the girls( Phillip was still seeking refuge with the Turners where the testosterone:estrogen ratio is a little more normalized) and we headed up to the North Shore for some shave ice. On the way, we passed a trailer with horses and signs for a polo match- so I figured we'd go see it after the ice fix.

As usual, I took a wrong turn and we ended up on a back road where there was a field with horses roaming around. The girls were thrilled, and the horses obviously get a lot of visitors because they came right over. We did finally find the polo field, but it was anticlimactic after petting the horses.

Saturday, April 4, 2009

Eight IS enough....

Ever since Kiera's friend Emma had her party at the arts and crafts shop on base, Kiera has been begging to have hers there too. She invited 8 girls and they got to pick out a ceramic piece to paint. We then had lunch and cake and finished with a pinata.

We managed to get out of there without any breakage- then as I was unloading the car, Bella ran into me and knocked her truck out of my hand. Fortunately I could glue it back together- but either way she said- It's okay mama!

Chale and Cree were an amazing help with all the girls. I love the serious faces.

Friday, April 3, 2009

Happy Birthday Kiera!

What a day. I spent most of the night unable to breathe or swallow and wondering if anyone has ever suffocated from the common cold. I was actually looking forward to some quality sleep time in my MRI, but the apparatus used was less than comfortable in my current state and I did indeed worry that I would suffocate. Fortunately Phil tackled Lily's treatment at the same time and we got to come home at a relatively decent time. Lily's doing more of the ups and downs emotionally which we all are, so whose to say we all don't just have treatment senioritis. Phil took the little ones out to test drive vehicles and I passed out for awhile. When I woke up, I managed to frost Kiera's Hannah Montana Guitar shaped cake(she's been talking about it for months, I can't let her down) while wearing a mask and washing my hands every 5 seconds and the phone ringing every 12 seconds. I have not listened to my messages yet, but if you are one of the 15 who called or 9 who left messages I promise I will tell her you said Happy Birthday. She is downstairs with 2 girlfriends who are sleeping over- so I am quarantined (I seriously need to work on getting myself quarantined more often when I feel better...)and Phil and Stew are left to deal...the report tomorrow could be very entertaining. We had a mini cake and she opened a couple presents. Tomorrow will be the pottery painting extravaganza on base with I think 8 girls...Phil has to work so I have enlisted our sitters to help. Kiera had officially invited she thinks it was her idea. I think Lily and Bella in a room full of breakables sounds entertaining, but expensive.

We are officially done with our 7th chemo treatment. We go in the 20th of April for the last inpatient treatment of this protocol and then Lily has 8 more weeks of mitotane daily after that. I am cautiously optimistic that we will be done by July. I want to plan a "no more chemo" party for her(and for us and all who have been an amazing support system these past months) we just haven't decided if we should do it after the last inpatient or wait til it's done done. Phil took my illness and this cycle finale to participate in a little retail therapy. He no longer has to drive a vehicle without AC......he found himself a nice previously loved CRV and brought it home today. I literally cannot afford to be sick! So don't be surprised when I serve PBJ at our big celebration......when mommy's away the monkeys will play.

I'm fading....hopefully I'll feel better tomorrow. Thanks for the encouragement!

Thursday, April 2, 2009

Nearing the end...

of this cycle, of treatment, of spring break, of my rope. Apparently my children are well adjusted, coping well and all in all normal. That must explain why I am so flippin tired.

Lily is doing fine. I am tired of people staring. I am tired of Tripler. I feel I should no longer have to wait for anything there again, ever. I am tired of the pharmacy. I am tired of the drive and the traffic. I am tired of trying to find a parking space. I am tired of my house being messy. I am tired of the smell of formula which I have tried 3 times, unsuccessfully to wash off pooh. I am tired of the mess. I am tired of the appointments and appointment system. I am tired of keeping track of it all. I am tired of band aids,pull ups and purel smell. I am tired of waking up as tired as I went to bed. I am tired of always trying to find the bright side. What if this is the bright side? That tires me.

Wednesday, April 1, 2009


Phil: what's a pirate say?

Lily: Argh.

Phil: what's a pilot say?

Lily: Argh.

Phil: A PI- LLLot- the guy who flies airplanes.

Lily(annoyed): Argh, Argh, ArghArghArgh

Lily Kay Monkey

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