Lost somewhere between wanting more and just going with the flow is where I linger. The battles have internalized. I've been trying to sort things out for months. Sort the laundry, Sort out homework, sort out routine and sort out feelings. I should be ecstatic. Life right now is exponentially less complicated than it was a year ago, yet my emotions are more so. I go from embracing the purity of the moment to trying to plan for the future to agonizing over the what ifs, to just getting through the day, to realizing another year has passed.

We found our new routine. I still forget Lily's meds from time to time and feel horribly guilty when a nasty tantrum brings it to my attention. I forget to put in her hearing aids before we leave the house and usually curse myself as I have to repeat almost everything 3 times for her. I forget what day it is. I remember when I could recall key pieces of information at will- now I fumble over my own children's names.  Other moms reassure me this is normal and to just be glad we don't have pets or I'd be calling the kids by their names too. I think we should get a pet, and I will name it Dammit.  Come here dammit. Dammit, Stop chewing on that. Better yet, I could legally change all their names to Dammit. George Foreman was onto something there- and I don't just mean the brilliance of indoor grilling. 

I spent the past few months trying to find balance where I don't think there is any. I try to write and it goes round and round. I try to clear my head, but the haze settles back in.  Even though I don't want last year to define us as a family, it has left more than a few permanent marks. I feel like I have been catapulted into a mid life crisis. I don't even believe in mid life crises. I used to think Mid life crises are for those who don't know what they want. I just realized they are for those who know what they want but are feeling the pressure of mortality to achieve them.  It's when the weight of reality starts to taint your dreams. It's the weight of balancing what's important and what's necessary. The hope of doing something more that is beyond yourself merged with the realization that there aren't enough hours to accomplish the basics.

There aren't words to describe the conflict of emotions that surround recovery. I know it's normal. This is the processing time. I want to channel the experience into something positive- but wonder if there is a way to do it without living in it. I love how music helps sort this out. I was trying to come up with an upbeat playlist to improve both mood and exercise time which actually feed into each other. I recently downloaded a new Alicia Keys song that Phil and I both enjoy very much. I always marvel at how he can listen to a song 50 times and only hear the beats or the riff.  I cannot listen to this song without getting chills. I don't know if she captures the feeling or if the feeling is captured in me. For me it embodies the moment you realize it's gonna be okay. That is not to say the pain is over, but you realize it is what it is and the only way to go from there is up.  SO as I am compiling my playlist of upbeat grooves- Phil says _ Hey! How about that new Alicia Keys one?  I laugh and once again he looks at me like I have lost it. What? It has a great beat. He is unapologetic. I know we have listened to the song in it's entirety no less than 5 times together. Have you ever actually listened to the words?  No, again he says- it has a great beat. Yes, but the title is -Try sleeping with a broken heart? Oh, maybe not. But it got me thinking. It's a song that makes me feel. Something that a lot of times I had to push to the back to take care of business last year- so for the past few walks- I listened to it and felt. I highly reccommend it. It captures a certain element of loss. Sometime you lose time, sometimes love, sometimes a friend, sometimes innocence- but you find a way to make it. And in the process you gain something invaluable. Sometimes you gotta do that before you can carry on, Dammit.

Calendar Girl

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

                    She even signed a copy for us!

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

What a Difference a Year Makes

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

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

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

Got Panda?

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

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

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

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

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

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

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

Am I 4 or am I 8?

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

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

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

103 degrees in the shade....

Lily bugged me all yesterday morning about making her "punkin patch". In our house they are no longer pumpkins, they are "punkin patches". She wanted to carve her punkin, but I convinced her we could do arts and crafts punkins instead. I figured that homework time would be the best time- you know keep them all busy at the same time.  Lily stuck features on hers and while I was helping Bella, she fell asleep on the couch. I was worried because earlier she had complained that her neck and head and legs were hurting.  I was hoping it was a growth spurt.

In adrenal sufficiency land, illness is tricky. A simple cold could knock her out if we don't get the cues and up her meds accordingly. She woke up screaming and when I felt her, she was burning hot. The mommy thermometer guessed 102. It was 103.7. I stripped her down and called the clinic. It was 4:06pm. No one was there.  I gave her a triple dose of hydrocortisone and called the on-call doc.  I knew what he was going to say- take her into the ER. UM, yeah . H1N1 anyone? No thanks.  But he says he will call ahead and that should expedite the process.  Any of the other kids, I'd throw them in a tub and ply them with tylenol and wait an see.  Lily is the great unknown. It could be an infection in her port, it could be an adrenal crisis, it could just be a virus.  So just on the tail of a great big talk with the kids about how I will be proactive at treating Lily no differently than them....there you have it.

I call Phil, he is on his way home, he offers to take Lily. Um Ok. I suck at ERs. Plus he always gets out of there in 1/3 of the time I do. He gets home grabs her and they are off.  I begin the disinfection process which keeps my hands and mind busy from the negative worrying I would be achieving in the waiting room.  I have also decided that all I need to do when someone spikes a fever is walk around them saying emergency room, doctor's office, emergency room, doctor's office  and the fever will  immediately disappear- or fade within 42 minutes which is how long it takes to get to the hospital with moderate traffic flow.  Phil calls from the hospital- her fever was officially 103. I don't know if officially means "done by medical staff" or "in a place we prefer to not have things stuck"  but obviously Phil was not chanting on the way to the ER. That is probably why he gets out quicker- they think I'm mental and have to observe me for awhile to determine if I am safe to send poor recovering cancer patient home with.  So in cases like this we are still under the oncology umbrella. Until she is at least a year out, we call the onc docs first, act later. 

I was nodding off as they returned almost 6 hours later with 103 degree fever, tylenol, and the handy ER print out that tells you how to care for your child with "URI (upper respiratory illness) also referred to as THE COMMON COLD". Really? Are the bold letters necessary?We didn't take her in with a flipping runny nose- she had almost a 104 degree temperature- and that was "officially" . She did get antibiotics though. Last time we took her in they didn't give her any and her onc doc about had a coronary. I guess it's protocol with these patients to antibiote now, ask questions later. That lets you know how quickly things could go south if she gets an infection. Fortunately she's not immunosupressed at all and other than her lack o adrenal hormones she has been pretty healthy. You know other than that and that pesky cancer.  

WE tuck her in and I try to sleep since I had a meeting this morning at Tripler at 0dark00. Bella is coughing non stop and since they sleep together I check on them every so often.  I finally fall asleep and hear Lily yelling for me.  She's thirsty. And wants to watch spiderman.  By the time I get water and Spiderman, she is back alseep.  I feel her and she is on fire again so I wake her up to take tylenol and get ready for my meeting.  Of course by the time I am out of the shower- all 3 girls are up, requiring breakfast and liquids.  I get a later than planned start out the door and am rewarded with 2 accidents and a stalled vehicle on the commute. It is just one of those days.  The meeting went well- it was an informal session with residents about parental expectations and professionalism. Although I felt like I really didn't have a leg to stand on with the whole- be on time advice, so I let that slide. All the while I am glad that I have an amazing husband who is at home with the sickie and offers to go to the ER even if the house looks like a hurricane hit by the time I get home.  I also was reminded what an amazing surgeon Lily has, she coordinated and led the meeting. I was thrilled to see she is mentoring? guiding? I don't know the right word there these young medical professionals. She is the perfect mix of brains and personality and I couldn't think of a better doc to be teaching about professionalism. 

I get back home and there is a random call from our auto insurance company. Apparently the girl who bought Phil's beater piece o metal back in April crashed the bad boy and thought it would be a good idea to claim it on our insurance. Like I said, one of those days. It does not bode well that it is only noon.  In about an hour, Lily and I will head back to the clinic to see if she's going to live. I suspect she will, for now. For now. Plus I the 2 hours I spent in the car this morning gave me lots of time to debate whether it was the changing of the blog or overusage of the word normal that landed us in this little predicament because for us there is no longer such thing as "just a virus".

Monkeying around.

I've given it a lot of thought. Since we are post treatment and the updates on Lily are further and fewer between- I'm going back to my old blog.  It was Adventures in Potty Training and since we are done with that chapter in our lives(mostly-ish) I have renamed it Monkeying Around.  I will keep this one and use it to update Lily specific stuff....If you want to see what's up with the Mallory's- come on over and check it out!  There will be a link back here in the side bar which will say when the last update was.   

I have also been toying with trying my hand at turning Lily's Blog into a book.  If for no other reason than to have as a personal record. There would be much cutting and pasting, editing and some new writing involved.  I want to do it while it's still fresh, and now that we are out of the throws of it and I have sooo much spare time on my hands(haaaaa haaaa haaaa) I started reading through it.  Yep. It's still fresh.  I do have to say though I am a much "better"(funnier?) writer when I am extremely stressed, slightly sleep deprived and totally annoyed- all internal editing goes out the window! 

Anywho- check out the less life threatening day to day nonsense we call life in the Mallory house!
http://mamas4monkeys.blogspot.com/

Cancer Awareness

I find it hard to believe that anyone does not know that cancer exists. But of course that may be because it is an ever present factor in my life.

We had another check up for Lily last week- she is doing very well. Her doc assures me that she looks normal and her face does not look 'moonlike'. She is an eating machine and is growing like a weed. Her doc also mentioned that we need to get going on screening for the other kiddos. Ugh. An evil necessity. Screening for cancer is 100 times worse emotionally than a gyn or turn your head and cough exam. But early detection is the key. So we will do it.

For the kids, it will be minimally invasive and based on immediate family history. They will each get routine bloodwork and Brain MRI's as well as abdominal ultrasounds. The ultrasounds are nothing- Phillip is an old pro- he also showed no concern about the MRI- his comment was"As long as they don't have to shove that tube down my nose, I'm fine". Kiera's eyes got wide and I used a cookie cutter, little people and my phone as an example. Her biggest concern is that it not be louder than daddy's music. I can pretty much guarantee that, but I personally would prefer daddy's music. Phillip and Kiera are going to do scans without sedation, but Bella and Lily will still require sedation. I don't like that part. Again, necessary evil.

It's part of our new routine. I am treating them as a routine doctor's appointment. We have to, this is going to be their routine. I don't want them to live in fear of doctor's or cancer, I want them to be aware. We'll be starting in November. Of course my concern was that both my dad and brother were diagnosed in November and I may be tempting fate- or I may be relying heavily on my angels to come through. There never will be a 'better' time.

The psyche is a funny thing. I never understood the bury your head in the sand approach until I was about 2/3 the way through my dirty dozen. The dirty dozen is what I refer to as the tests reccommended for screening as adults. It includes a routine physical, bloodwork, a gyn appt, dermatology appt. endoscopy/colonoscopy, Mammogram and abdominal ultrasound . It's A Brain, spine, breast, and screening MRI. And last but not least the PET scan. For those who have asked- isn't there a test for cancer yet? The PET scan is the closest thing to it. It's not useful in children due to the way it works. You are injected with radioactive glucose. It's low dose- really short half-life. The idea is that glucose(sugar) is taken up more quickly by rapidly multiplying cells- cancer cells are rapidly multiplying cells. In kids- too many of their cells are rapidly multiplying since they are still growing. This is the test that put me over the edge. The test itself is like a standard MRI or CT- a little bit trying for your average claustrophobic, but it's the hour of complete motionless, quiet time you are forced to endure after being injected with radioactive glucose. Time that you pray for every day suddenly becomes a curse as all you can do is pray for an hour that none of your cells latch on to that glucose. It became abundantly clear to me that I wanted to live. Not in the live or die sense, but that I didn't want my life to be on hold for all these tests. The stress alone of them could take months if not years off the big picture. I don't want my kids to go through that. Experience is ever enlightening.

The best answer I've found is to treat this as normal. No sense in treating it like a major production if it's something that's got to get done. Getter done. It's more of taking life philosophy and injecting it into the situation. Everyone has a routine that works for them. Each routine includes things we would rather not do, but have to nonetheless. This is part of our new routine.

Cancerversary

Lily has survived cancer for one year today. 365 days ago, Lily, Phillip, and I walked into an ultrasound and came out with the weight of cancer on our shoulders. There were moments that time stood still and tomorrow couldn't come fast enough. Yet here we are.

A few months ago, I thought about this day. I thought...we are going to throw a big party and celebrate. But here I sit not so sure I want to celebrate this day our lives were changed forever. I am not so sure I want to celebrate the thing that made this year the toughest year I have ever had- and I've had a couple really tough years. DO I want the kids to celebrate this thing that put a cloud over their year? Do I want Lily to celebrate the thing that caused her so much physical and emotional pain? As we plug along finding our normal again, I'm not so sure I want to celebrate something that takes us back to that day. Had I not been adamant that something was wrong, Lily may not be with us today.

And then I think, why shouldn't we celebrate? Lily is a survivor. We are survivors. We live on with the disease and embrace life. We celebrate life. Cancer is horrible, but no one lives forever. Accidents claim loved ones every day. Other diseases and sicknesses ravage people all the time. If anything, Cancer is a reminder to tie up loose ends and keep them tied- you never know when that knot will become your life line. But like any other anniversary or celebration, is one day a year enough? Why not celebrate everyday? As any survivor will tell you, reminders of the disease are everywhere. Pink ribbons, yellow bands, lemonade stands, and fundraisers. These reminders are symbols of survivors and memories of fighters in a battle that is far from over. We walked into Chili's a week and a half ago and every wall, the back of every booth, and every window was covered in colored chili peppers. I had to fight back tears because every chili pepper represented not only a generous donation to St. Jude's but someone whose life had been touched by a survivor or a fighter.

So, I've taken a few moments and reflected. Cancer is part of our lives now. But it will have to wait in the wings for now- we've got too much living to do. I think the best way to celebrate today is to have a regular average day. Have you hugged a survivor today?

Heigh Ho, Heigh Ho...

The kids are watching Snow White, so I have just a few minutes to rest. I have countless entries sitting in a queue. They tend to drone on and on about trivial stuff. It's not very entertaining. The good news is that is much appreciated. For now I will have to make up entertaining stuff and that is Ok by me.

Lily had her hearing appointment. Her hearing has not gotten worse. Yea! She also had a flu shot and blood drawn, and the flu shot was way more traumatizing than anything. She is round and bubbly and I am just enjoying having Lily back. There are major ups and downs and some residual goop from the past year's exploits- but all in all I think we are fairing pretty well.


Our first roadblock to tackle (and in Lily's case, retackle)was night-time potty training. I am furiously knocking on wood as I announce we are done potty training. That is to say, I have been trained to not give them fluids after a certain time, ensure they void all liquids before bed, and not worry about losing sleep over bedding changes. I do believe that kids potty train when they are ready. I believe that most kids will be 3 before they are ready. More often than not the training that occurs before hand is that a parent is trained to read the cues and usher the child into the loo. Either way, when both parties agree on readiness, training is complete. In our case, we ran out of bread, milk, and pull-ups. Night time potty training took a seat on the backburner a year ago. I asked the girls if they were ready to be big girls and sleep in their under wear. They agreed. That was a week ago and every morning they have woken up dry. I'm sure we will have our moments- but all will pale compared to trying to keep Lily dry and hourly bedding changes through chemo. And That is my excitement for this week! Yea!