Effusions in Plural

ef·fu·sion

/əˈfyo͞oZHən/

Learn to pronounce

noun

1. an instance of giving off something such as a liquid, light, or smell.

   "a massive effusion of poisonous gas"

     Similar: outflow, outpouring, flowing, rush, flood, deluge, torrent, welling

   
   

   • MEDICINE

     an escape of fluid into a body cavity.
   • an act of talking or writing in an unrestrained or heartfelt way.

     "literary effusions"

     Similar:  outburst, outpouring, gush

   
   

LFS. Family. Camp. This was years in the making. An idea. A wish. A dream. 

2019. Trish said. This is it. We are gonna do family camp. 

6 board members became 5. Then 4. Life. LFS. Each of us tackling obstacles, health, business, family. Loss. 

Montana. Camp MAK-A-DREAM. It's a bit expensive to get to, but totally worth it Trish said.

The Journey to Living LFS's First Family Camp began. Me spewing ideas, visions. A year and a half until camp became 6 months away, 6 weeks away, 2 weeks away.

I would wake up at 3am. Unable to breathe. Alternately excited and terrified. So much could go wrong. But we are mutants. We know how to turn bad into a good time. There is strength in numbers. Plural. More than one. 

1 week to go- both girls get colds. I have a cough. I "rest" by organizing and reorganizing what I need for camp. Bella is giddy, checking weather in Montana daily, hoping for snow. 

I am impossibly excited. and nervous. I am excited for the girls to meet others who know this crazy existence. I know how life changing it was for me to find my mutant tribe- and still I did not predict how effusive the impact would be on Lily and Bella in different, yet personal ways. 

After a night of flying, Lily getting airsick, having an adrenal crisis and me failing miserably at finding any fun in it- the clouds cleared as soon as we were greeted at the airport by one of my favorite mutants, Mills- who transports us to one of my effusively happy places. House of Snark and Groot.

 I'll be honest. There are MAJOR gaps in my memory. But I remember how being there makes me feel. The girls(BEE LAAAA) came alive. She and Mills not only share a birthday- but a really inappropriate bizarre sense of humor. Mutants are caretakers by nature, each in their unique way. They are my sistahs. When I am with them, I know things will be hectic but handled. 

We make our way to Camp, sardined with blizzards worth of items and laughter. I am beyond grateful for the energy and efforts of the team. I feel perpetually exhausted but happy. Old friends. New friends.The outpouring of love and hugs takes my breath away.  I assume it's the altitude. 

The families are now MY families. After a day, the energy is hypnotic. This. This is what I wanted. For me. For the girls.  For anyone who felt alone in this genetically mutated life that landed on us by happenstance. SO much laughter. Therapy over art and food and campfires. Getting more from the experience than I could ever give. Adventures like archery (talk about targeting tumors!)and ziplining, draw out even the most antisocial BEEE LAAAs. 

Learning from a carefully crafted team of counselors and professionals familiar with LFS. The kids proffering their veins and blood to help research that promises to make living with LFS easier. Seriously- how awesome is a group who happily will get a poke during CAMP? And the amazing group who did it for us!

I walked up the hill, my lungs burned. As a Colorado girl, this was more than altitude. I couldn't catch my breath. Damn. Damn. Damn. I wanted to hike up the mountain with the group, yet here I could barely make it from cabin to cabin. Lily started hovering. She knew. She said I was breathing funny at night. I think she'd ask me 53 times a night if I was ok. Yeah I'm ok. 

We closed out camp with an amazing talent show, Lily sneakily getting Bella to perform and everyone walked back to their cabins, the pathway lit by lanterns in honor of those we lost. The next morning, a welling hangover. Mutant fun hangover which led to sudden withdrawal. The comfortable fuzziness enveloping us as we prepared for see ya laters. 

Our flight the next morning was obnoxiously early. Lily, forever the planner was not satisfied with my laxidaisical attitude towards the day of flying. We somehow made it through- and I slept most of the flights. Which is not something I do. We arrived in Hawaii and the only thoughts perfusing my brain were a shower and my bed. And to breathe. I was coughing more and the pressure seemed to be increasing. I had thought about bumping my chemo appointment for the next day, but it was looking like I needed to be seen. 

I arranged for the man-child to drive me to clinic after his class. I called clinic to let them know I was kinda having a bit o trouble breathing. The clinic was swamped and I could tell they were feeling out how bad I felt. In the end we agreed I'd page the doc when I got there and I could head down for a chest xray. 

She took one look at me, shook her head and said I was kinda gray. I disagreed and mentioned that although cold, it was sunny in Montana. At that point she started moving fast, she made the jump to pulmonary embolism. I didn't think it was that, but I had flown and honestly I wasn't sure which was worse emboli or toomahs? She personally grabbed my vitals(not great), a wheelchair and off the the ER with me. Phillip just kept shaking his head. This is not how I thought today would go either. After tests and more tests and a couple more tests. We ruled out pulmonary embolism and were leaning towards pleural effusion. 

The pleura line the lungs, sometimes fluid collects there- due to infection or you know, cancer. It causes that whole I can't breathe thing. effusively. After some oxygenation and antianxiety meds, the doc agreed I could go home if I returned the next day to see the pulmonologist. I had to maintain a certain oxygen level while walking around the ER in order to get my pass. This wasn't like I was trying to cheat the system - I kinda like breathing. I knew about pleural effusions from my various cancer support groups. They can be inoccuous or well, noccuous. 

I felt pretty yuck. I kinda just wanted to sleep but then the coughing and the gasping. We found our way back to Tripler the next day and got to introduce a nice young pulmonologist to what happens when Jen is de-oxygenated, stressed and left in a room with little entertainment. Fingerless gloves. And snide comments about how I know all about stuff and stuff, you know cuz grey's Anatomy. Then random quizzes on LFS. Which he said probably really wasn't a cause here, to which I explained- zebra unicorn pegasus theory. We grow weird. Don't assume it is or isn't. Or in this case don't effuse it is or isn't. 

Normally I think I'd be more panicked about a big needle(sorry they use the term CATHETER- less intimidating? and oh yeah despite being asked publicly 53 times if I could possibly be pregnant....no, one needs to have certain parts for that-then suddenly a receptionist holds up a post it with "Pregnant? Yes or No?" ) wt actual eff? 

Anyhoo- the thoracentesis itself was fairly quick and anticlimactic compared to the whole drawn out suffocation act I had going on- so yay. There was fluid, and coughing and more fluid and breathing and a little soreness but mostly breathing. Look away if you don't care to see that Jen's pleural fluid looks just like pee...I think the doc and nurse were taken back that I wanted a pic with my fluid, but I mean people photograph EVERYTHING these days. Effusively. Plurally. 

Getting home, my lung readjusted to having space to do it's thing. There is some fluid in my other lung, and chance that the left side could fill back up but we deal with one step at a time. He removed over 800mL of fluid- sending off multiple containers to see if we are dealing with infection or cancer or what. For now I feel better. I can take a deep breath and look back on the camp experience with a clear mind and full heart and a effusive tribe of superheroes. 

April with Team Mallory

I thought I'd do a quick picture update, then 150+ pictures...2 iphone slideshow failed attempts and a computer crash later- here we are. 

April was amazing, busy, wonderful. I can not express how proud I am of my minis. From donating birthday money to St. Baldrick's, to Lily giving almost every class at school presentations on Childhood Cancer and the need to fund research, to the actual bald. Most days I feel like I'm failing miserably- then these bald heads remind me we are doing something right. We can't control circumstances, we can control how we respond to them. 

I am humbled, honored and speechless at the tremendous support we've received this month. From donations, to fundraisers, to sharing all the posts, to wonderful t-shirts, lovingly made by friends(Snarky Cancer is the best), I so appreciate every little and BIG contribution to Team Mallory. I am so grateful for your friendship, love and time. Friends are family that you've chosen, thank you for choosing us. 

Phil and I ventured to Toronto for a long weekend LFS conference. It was the most mutant bang for our buck! There were lots of friends, old friends, new friends, it did my heart good to reconnect in human form. There were so many people I needed to hug, repeatedly. So many who don't like to be touched, who put up with me. I was not on my normal scientific fangirl game, but it was so encouraging to see the LFS community together- hashing away at this mutant p53 problem.  And there were so many pictures I didn't take, friends I didn't get to hug. Plans will be made to rectify this. ***Phil cringes and considers who will employ stage 4 cancer mom to finance this***

As for Phil. He is my lobstah. My best friend. It's been a long haul and he's always supported my need to be a professional volunteer. Which often means his being a professional volunteer and best friend, husband, dad status. None of this would be possible without him. Read that as you will....He is the best person I know. Now on to May- May the odds ever be in our favor!

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The Meaning of Mutant.

I am a MUTANT. But guess what? So are YOU! neener neener neener.

mu·tant  ˈmyo͞otnt/

dictionary.com

adjective

1. 1.
resulting from or showing the effect of mutation.

noun

1. 1.
a mutant form.

Merriam Webster Dictionary

NOUN

: of, relating to, or produced by mutation

OXFORD Dictionary

ADJECTIVE

Resulting from or showing the effect of mutation.
‘a mutant gene’

NOUN

A mutant form.
‘frequently only a small percentage of the offspring of mutants resemble their parents’

Cambridge Dictionary

NOUN

an organism that is different from others of its type because of a permanent change in its genes:

These mutants lack a vital protein which gives them immunity to the disease.

This mutant gene is thought to cause cancer.

figurative humorous I'm convinced he's a mutant - he's not at all like the rest of our family!

disapproving an unpleasant and frightening thing:

The result of these experiments will be a nightmarish world filled with two-headed monsters and other mutants.

So. Well those are the definitions of mutant from, you know, reliable sources. Because I'm just Jen. Me. The culmination of my experiences(many "highly associated" with my mutation in the TP53 tumor suppressor gene). AKA- LFS- Li-Fraumeni Syndrome. 

My family deals with hardship through laughter. Dark. Morbid. Hysterical. It's an acquired taste. It took Phil awhile. Many of my close girlfriends are forever scarred(remember scars are BEAUTIFUL- they show the battles you've won) by interacting with my extended family. Those who choose to keep me around- well are now family. Friends are family you choose. My mutant family is my collection of weirdos who happen to share the same mutation and snarky need to swear, I mean live life to the fullest. 

Words are precious. A single word can change the meaning of a sentence, the light in someone's dreams, how you perceive the world. Words like: cancer, scars, mutant. 

You have: CANCER. Your scars are HORRIBLE. I AM A MUTANT!

Newsflash- we are all mutants. Our DNA mutates over time to adapt to changes. Not all mutations are BAD. SO declaring I AM MUTANT, HEAR ME ROAR- is kinda like saying- hey check it out, the sky is blue. When your precious offspring toddles over and asks you WHY the sky is blue- well that's where shit gets real. My kids are not offended by the word, but I am also kinda shocked by what does or doesn't offend kids these days. Get off my lawn???

There are many many many mutations. Caused by many many many things. Not all are bad. Some are very very bad and contraindicated for this whole living thing we seem to enjoy- mostly. There are so so so many p53 mutations. There are so so so many OTHER mutations. We cannot predict the pattern of cancer or if these superior(in my opinion) mutants, will get cancer at all. The data pretty much says we will. I used to crave data. Now I say fuck it- I am not a number. BUT- do not interpret this to mean data collection is not important- because it IS. Research is so very important. Yet so many times, the researchers find solutions in the rare- the zebras, the unicorns. We are the rare of cancers. Half of all cancers have p53 mutations. We just happen to have one of these mutations in ALL of our cells. We are the key to solving over HALF of the cancer riddle. If we can LIVE long enough to get there. We are living LFS. 

There has been some dissent over the use of MUTANT. Someone compared it to using the N-word. As the less spectacular and whiter half of an interracial relationship providing interracial offspring- I cannot even go there. Because guess what- when I type- N-word, you know what word I mean. Now if I call a human that word- well that's rude and awful and despicable and sets decency back decades. Now if Oprah, Jay-Z, or Kevin Hart use the N word, well that is up to them. I can't get my kids to do dishes- I cannot possibly solve an issue like this in my blog. BUT that being said- no comparison- a lively band of mutants to generations of oppression. It's a word. You can or cannot use it to identify yourself if you feel it may or may not identify you. I've found that the merry band of mutants who identify with this M- word are my tribe. Their approach to cancering and life in general are very similar to mine. 

So- I polled my mutant friends and non p53 mutant friends on their associations of the word MUTANT. Mind you- I am an acquired taste and this is completely absolutely and totally biased. These are my people. And this is their voice. Words are what they mean to you. If they are empowering, embrace them. If they offend some, respect that. But always, always, always BE YOU. Mutations and all. 

What does the word MUTANT mean to you? 

-   Super awesome

• PURE FUCKING AWESOME BADASSNESS!!!!
• A family that I love and adore
• Not wild type
• Containing novel genetic information not inherited from parents
• The X-men  x 10
• someone who has a mutation
• Pure love
• Baddest form of badassery ever. 
• I am of course familiar with the word (Teenager Mutant Ninja Turtles!!). I guess I would say it is a being (animal, human) that has developed abnormally as a result of an external influence. But I don't think I have ever used the word. It seems like a very 80s word used in fiction.
• I am in a family of mutants so family reunion to me.
• Love
• Before i used to think X Men 😂... now I think mutant means some of the kindest, most compassionate, loving, admirable people I’ve ever met! Beautiful souls that’s what it means ❤️
• Inner Strength, resilience, friendship and understanding
• Dont want to crush into your positive vibes. Anyway...most time being a mutant means separation for me, and loneliness. The 10 Minutes a day virtually in Facebook for sure make a difference! But in real life, it makes me feel very lonely...
• Teenage Mutant Ninja Turtles
• I kind of think of "mutant" as normal, but the word tends to shock people. It's more acceptable to discuss genetic abnormalities by saying, "I have this mutation," rather than to say, "I am a mutant." Maybe it just sounds kind of aggressive or attention-seeking - something people say for the shock or laugh value? Mutation happens all the time, and I would guess that most people have at least some form of genetic mutation. I know I do... #ProthrombinGeneMutation
• Courageous badass super hero
• The key to the future of humanity 
• Friendship, connections, scans, fear, love, science, hopefully awesome super powers!
• A tribe trying to withstand this p53 mutation shit storm through love, friendship and a little humor.

Team Mallory Takes on St. Baldrick's

There is that spot in my heart that aches when I think of what Lily went through druring chemo. It leaves marks that aren't polite to talk about at parties, but They are there, always. I think of what we all went through. The unknowns. The fear of losing her. The helplessness. The gracious help from family and friends.  We were learning more details about Li-Fraumeni Syndrome, a risk we all carry. I had only met a couple others online at this point who "got it". The Ramers just lost their son Brent last year, after YEARS of cancering. And our hearts hurt. This shouldn't happen. Organizations like St. Baldrick's are making a difference.

Oh monkey. 

Bella Boo- by Lily's side most of chemo

Phillip and Lily's special bond and ELEPHANT!!

sisters. first. forever. 

This is how we feel about Childhood cancer. 

SO in 2014, when Lily said she wanted to shave her curls, well that achey spot lit on fire. By now- I had a mutant posse of friends- each one fighting cancer in their own hell. Ah LFS- we got 53 problems but obviously a tumor suppressor ain't one of them. I had a tight knit group of sistahs, who became my life line as I navigated chemo for the first time. We told our kids about their kids. The Ramers(aka Ramernation) were going through the delights of everything LFS had to throw at them- multiple cancers in multiple children and NO clear path. Their momma Ann is one of few who I would go to to clarify science questions- she knew it all and if she didn't she'd find out. Somewhere in the middle of all of it, we formed living LFS, because we didn't want other families to be without the support we had found. She is one of the fiercest advocates I have ever met.

Living LFS mutant sistahs. 

When Lily shaved her head for St. Baldrick's the first time- all those burning spots of PTSD flared up but mostly we all became empowered to see her - her strength. I was extremely honored that she wanted to honor me, but I have had a beautiful life. My heart aches for our little warriors, through no fault of their own, have their years cut short by cancer.

https://lilykaymonkey.blogspot.com/2014/04/finding-something-she-can-do.html

 I don't always trust odds, numbers, risks. They are guidelines. There is just so much we don't know- so much just plain old LUCK. No one wants to beat cancer more than someone else- we don't want cancer to win.  Yet as we wait yearly for scans, we try to make healthy choices, we try to live. We check in with our LFS friends - Brent and Lauren Ramer who seemed to be wholloped with one rare unicorn cancer or condition after another. The entire time we've known Brent, he'd been in chemo or dealing with a new cancer. Lauren has tumors pop up, they deal, and just keep living, she just finished chemo to have yet another tumor removed. . The odds are an analysis after the fact. We try to make a difference by sharing our stories, our experiences. Maybe one of our weirdisms will help someone else. If not, then there is research. Organizations like St. Baldrick's who fund severely under funded childhood cancer research and treatment protocols.

https://www.stbaldricks.org/blog/post/the-girl-who-beat-the-odds-lilys-story


In 2016, I had just been diagnosed with brain metastasis. The clock ticked loudly. We hunkered down. Just like Phil had the overwhelming need to take Lily to football games and disney, we needed to go to Europe. We never had a honeymoon, we are always day to day. That trip gave us so many memories and completely recharged us. We facetimed Lily fo her shave. It was not about me- it was about her doing what she could to help. She lost friends too, Haley, Abriana, Elikia. So many more were still fighting cancer, like Brent. Years of chemo and fighting and nonstop cancering. living cancer LFS style. but kicking ass and taking names- Chuck Norris style.

Lily rocking it after shave 2.
Photo credit:Debbie Leanne. 

http://lilykaymonkey.blogspot.com/2016/03/lilys-second-shave-for-brave-st.html

So here we are - 2018. Lily signs up for her 3rd Shave. Not phased that she's now 13, that middle school crowd is kinda tough.  Yet she is a force to be reckoned with. The little ginger haired toddler who napped almost exclusively in hospital rooms, is now almost a teen and last week says- I'm gonna shave for St. Baldrick's! Ok, why. For Lily. Ok then. We can all shave. Ok, see if Phillip and Kiera will. And of course when the youngest asks- the eldest teens say- yeah- that's a great idea and it suddenly becomes a competition as to who can raise the most money. They all set up their own pages and have told their friends. I had many many happy proud tears and big hugs of my mini mutants.

So I realize we ask a lot for help with fundraising. I appreciate our friends' and family's generosity. If this is a cause near to your heart- please pick a monkey and donate. If you can't decide, we've all agreed that Lily can be the default! All money goes to St. Baldricks!If you would be so kind as to share this blog, any of the kids' pages wide and far-we'd appreciate it!  If you would like to join us (no shaving required) the event is April 22, 2018.  If you'd like to hire out kids to do cleaning or lawn work or whatnot for donation- Mallory kids are at the ready. Bella already is helping make leis for me to earn $ for the shave.

Thank You for continuing to support Team Mallory and our Many Adventures, Especially adventures that Fight Childhood Cancer!

Lily's Page

Bella's Page

Phillip's Page

Kiera's Page

Jen's Page

End of Summer Clean up

The follow ups this year are a shadow in Bella's arm and a lump that appeared on Phillip's ribcage. Hoping for nothing, but we don't know until we know. I think of the swollen lymphnodes a few months back- were they trying to fight this lump off? who knows.

Phillip was of course referred out to a dermatology consult. Which was fine with me, I've been to Tripler derm a few times and the scars to prove it. Lily was referred out years ago and I was impressed.

With LFS there is a lot of self advocating. I'm trying to give the kids the tools they need to navigate the crazy healthcare world with a rare condition.  I tell them to pay attention to biology, anatomy, in school and in person. Know their bodies. If anything weird pops up and lingers( we have a 2 week rule) we get it checked out.

Phillip is on the cusp of adulthood-he's no stranger to medical stuff as he's been independently managing his diabetes for awhile. I appreciate that he tells me about concerns. It's a hard concept to understand- taking care of things early could mean the difference of life and death for us. I prepare him for my gut reaction- to remove it. He has some time to think on it. I will let it be his call.

The nurse calls us into the room, she recognizes Phillip. I ask if she shops at Safeway, we discuss their Friday deals and great flowers. I share with her a bit of our family history and Li Fraumeni syndrome and why we are here for this little lump.  She looks at it, visibly taken back by our history.

When she leaves I explain to Phillip why I go over LFS and our history. We are lucky to have a team at Tripler that knows us and our history and automatically takes into account our mutated p53. little things that don't concern normal people- could be bad for us. They could be nothing too. I tell him most of our time is advocating for ourselves. Most doctors have never heard of LFS and it's on us to make sure they understand. I show him the living LFS pamphlet I brought as well as the latest journal article on LFS and screening that I printed out. I'll leave both with the doctor.

As we sit- Phillip paces- the view overlooks Aiea and we can see the Arizona Memorial. He asks a few questions, I answer. The doctor finally comes in. Phillip takes off his shirt, the doc draws around the lump. Its about a 1 cm oval, palpable, not fixed. He's not concerned and says considering history, lets remove it. I agree.

He asks me several questions about Li Fralini - it takes about 5 tries before we got the name down_ I tell him we call it LFS for short. He asks me if I'm a nurse. Nope. not officially. He asks me specific questions with medical terms- he's feeling me out and my knowledge- I take the bait and answer equally as medically. He is not familiar with sarcomas, I ask him to consider wider margins than he was planning so we don't have to go back- I hold up my shark bite. I explain about Lily's sarcoma and 15 year old LFS friend was just diagnosed with an extraosseous osteosarcoma- our lumps tend toward weird.  I pray it's nothing- I've had several of those too, we just have to be careful. And oh would he mind doing a once over look at his other skin to make sure everything is ok.

He smiles, almost condescending, but he has kind eyes so I let it go. He says he realizes I've been traumatized but not everything is cancer. I would rather have a non cancer removed then for it to become something that cannot be treated. I explain again that both my brother and father died of brain tumors, phillip's sister had adrenal cancer in addition to sarcoma( which was just a nothing...) He interrupts- medullary tumor? No- It was adrenocortical carcinoma. That got his attention. In addition to her plexiform fibrohistiocytic tumor, mine was also fibrohistiocytic but I think they are calling them pleomorphic something or other's now- I can't keep track. That was the same time as my breast cancer which metastasized to my lungs, bones and brain- so yes there has been LOTS of trauma and lots of cancer flags.

He pulls up Phillip's shirt and makes a wider margin around the existing one. He turns to me- you should really consider starting a patient advocacy group. I pick up the living LFS pamphlet and say - I have. This is our group.

Living LFS? What does that stand for?

Oh holy fuck- again with the Li Fraumeni Syndrome pronunciation guide. I tell him a bit about some of the cancers and rarities our families face, but it is the most phenomenal group of people. He asks to keep the literature- of course- please.

We schedule the surgery- it'll be minor, but we have to work around his college schedule now. And so now we wait.

Mid-Cancer Crisis. Staying the LFS Course.

I feel like EVERYONE I know is battling cancer. Various stages and various levels of support- like any challenge in life.

As a family we are stuck in Mid-Cancer Crisis. This is living LFS. Li-Fraumeni Syndrome- the hereditary cancer syndrome from hell. How do you feel? Like Fucking Shit. Fine. I'm fine.

We are mid scans. Bella's was Friday. Phillip was Saturday. Kiera and Lily are status quo. phew. which is not to say clear- but this is how we live- we triage. Like Fucking Superstars. One day at a time. No news is good news.

I am mid cycle. I had a fever this round- shhh don't tell- I didn't go in. I didn't call. I took extra hydrocortisone and tried to sleep. everything hurt. Things were runny. Normally I'd call my friend D'Ana who would never call a nurse for a 100.5 fever but would absolutely tell me to. Little Fevers Suck. They too pass.

I am mid way to losing all my shit with the kids. They are kids. One more week of summer. Phillip and Bella got to spend almost a month with Grandma Sandy and Ed. Kiera and Lily enjoyed the independence when Phil and I went to Alaska.  Lotsa Fun Summer. Reminders of summers past.

I feel invisible. I feel exhausted. I feel like I'm drowning in the trying to, needing to do better. I feel like I have to find the energy to put the smile on and fake it til we make it. Let's Fake Smile.  We are making it.

Somehow we are back to whatever normal we are. I know it could be worse. I so want it to be better. Looking Forward Some. Even if just a day at a time.

I can't live like I'm dying.  The toll on Phil. The toll on the kids. I can't live like this is normal. the toll on me. Let's Find Strength.

I am am midway through rearranging furniture. I focus on cooking, even though nothing sounds good.  Small changes. Things I can control. Things that are important.

Love. 
Family.
Surviving. 

Half way.

A couple of long days, but not too stressful. I am super grateful for the new peds radiologist. He's been really great about working with me, listening to my concerns and the radiation techs- who have known us for years, have been wonderful.

Lily's day started out fasting- since they try to get good images of her belly and that's where the adrenal tumor would likely grow back- it's better to not have a lot of extras in there. We all know how much Lily loves food(what's not to love?) it is a minor challenge. We all tend to get Hangry - so we sat down and went through old baby pictures to distract her. Of course as we sit there, she's sniffling, coughing and says her throat hurts. So just like her mama- she gets sick for scans. Which other than worrying about the breathing and coughing- what do you want to do when you feel sick- lay around and sleep. Not in a cold, hard, loud, tube- but we take what we can get. As we looked through pictures, I found the one that always sticks out in my mind. This is one of those pictures that always makes me think- wow, was that big old adrenal tumor already there?

But we can't wallow or participate in shoulda coulda wouldas. We learn and go forward. Which is why we scan. There is a lot of anxiety surrounding scans and one of the reasons many clinics won't do it- they feel it causes more stress than benefit. I think it is an individual thing- like anything. This is one of those times genetic counselors and a good support staff is instrumental- they help people decide what is right for them in this area. Some find the scans too stressful and  pay attention to symptoms and have things immediately checked out. Since we have been doing this cancer drill awhile- and over many generations- there is some merit to both. Ideally the routine that works with the person's needs and coverage- is ideal. I didn't scan for a lot of years. It was too stressful, but over time I have seen first hand how catching tumors early has definitely advantages in survival. There are still so many unknowns, but I want the best chance for my kids. There will be tumors due to type and location that really not much can be done without damaging quality of life. Those decisions suck. I have one of those decisions in my head. You make those calls at the time you have to with the information you have. 

We get to MRI around 10:30. We fill out the papers since they last a year and it's been a year. I don't think I've never not filled out the papers- but its one of those things- it's almost automatic. I read the questions out loud so the kids can answer. The are you currently pregnant question usually gets fun responses. 

The tech hands Lily her scrubs and takes the movie Lily brought to watch in the groovy MRI goggles. She changes and we go over the plan. There's a lot to scan. She has a dedicated brain and abdomen as well as the full body for LFS screening. They try to minimize the time as much as possible but really want good images- so we know it's gonna be a long day. She said in between each set she will give Lily the opportunity to get up and walk around. I know this adds on to the overall time, there are coils and gear that has to be taken off and reset each time she moves- but I appreciate them taking good care of her. 

off to the races. 

The goggles before they put them on- with headphones, under the head "cage"

Overall, Lily is in the scanner about 4 hours. The peds radiologist comes and talks to me after the first round, it all looks good so far and then each subsequent round. We talk a bit about LFS and things I've noticed with Lily and through others' experiences just to help him understand my concerns. He has a 10 year old and it shows, he is great with Lily and great with me. I appreciate the extra time and care. Most MRI facilities are really busy, Tripler is exceptionally so(lots of active people and dependents) and they are down 1 machine. They brought in a portable out in the parking lot- so patients periodically come in, change and head out back. It reminds me of my very first MRI when I was 15- in the parking lot of the hospital. 

Lily comes out a few times- they had to run a couple sequences over- which in MRI world means starting over. The cold is definitely a factor and I feel bad for her- but she is doing well. We walk up and down the hall and I rub her back. Then she gets a bit of a reprieve- the system has to reboot and so she plays on her iPad for a bit. As she goes back in, the doc comes and we talk about her arm. We've been watching a spot for years in her humerus. We kinda forget about it in between scans and then it's like ripping a scab off- oh I forgot about that. This is one of the gray areas. You find things that could be normal weirdisms you'd never know about- or it could be the beginning of something. In LFS we tend to err on the side of it could be something and out is better than in. But that works well for superficial lumps and bumps- once you get deeper- you have to start weighing benefits and risks of digging around. He would like an Xray to check. I used to freak out about X-rays- but I know that it will give him different information than the MRI and it is better to see bones with.  I ask- if it doesn't really show anything are we going to come back and look more with MRI and should we do a more dedicated MRI since it has grown a couple millimeters and she is in there and we still need to look at her arms? And this might be the point he starts wondering what he got himself into with us. So I explain- we grow weird. That certain cancers seem to pop up at certain ages in LFS. On a normal person I would be ok saying"it's a cyst" and maybe monitoring it- but in an LFS kiddo with a history of 2 cancers already- I would be more comfortable with more information especially if we need to decide to biopsy or remove it. I explain how the sarcoma in her leg and my arm really never concerned the docs and it was at my insistence they were removed. It happens a lot in our group of mutants. And with hormone changes and this age- I need to know more. I want her oncologist to have more information. He orders the dedicated MRI. The tech tells me she saw the Mallory's were on the schedule and took leave for the rest of the week. I joke she should know- Lily's not the easy one- she shoulda taken Bella or Kiera. 

Lily is done just in time for her hearing aid appointment. Which luckily is just down the hall. We enjoy a little Chopped while we wait for the audiologist. She's getting her new streamer so she can pair her hearing aids to blue tooth and use them as headphones. It's actually pretty cool and she is stoked. 

rocking out to Katy Perry. Roar.

We head back to radiology so we can look at the images with the doc and squeak into the Xray. It's now after 5 so the hospital is quiet. I like this time in the hospital. And I know traffic is a bear- so no rush to sit in it. I feed Lily a pop-tart from the vending machine because I know she's starving. The spot in her arm is bigger than I like. Definitely want to discuss this with her onc. She is fascinated by her insides. Her left adrenal looks good, a couple other areas I was concerned about look good. I feel positive overall. We head over to Xray. 

The tech wants to know which part hurts. I tell him they saw a spot on MRi and we are cancer screening. His bedside manner instantly is more genial. We finally are done for the day. I read half a book, my head isn't splitting, I've managed stress and lily did exceptional. I thank her for doing this and she gets to pick dinner. 

Chili's- Root Beer and games

We get home and pretty much crash. I had been patting myself on the back for how well I handled it-and that I was feeling pretty decent and then the exhaustion hit. I woke up Thursday feeling pretty awful. The debate- do I go back to bed or get on with the day? I went for a walk and called Monica for a mini mom melt down. I wish she was next door still- but telephone works. She reassures me that I'm allowed to be exhausted and tired and it will be fine. Sometimes you just need to hear it. I take it easy as possible until afternoon activities. We take Phillip to work out, Kiera to voice lessons, a quick stop at Walmart for necessities and a movie for Bella in the scanner- she's a huge Divergent fan and the Allegiant was out on DVD. We pick Phillip up- drop him and Kiera off- they will take Lily over to Aunt Theresa's for dinner and Bella and I are off to Tripler. 

1st non sedated solo MRI- rocked it!

Bella is milking the hunger thing- and suffers from my nervous bladder. I think we stop at every bathroom. We fill out her forms, change her into scrubs and she and Ducky are ready to go. Ducky gets a quick check in the metal detector and is approved to ride along for the MRI. 

Bella and Ducky- a special stuffed comfort made by her friend Sophia. 

I like the quiet of evening MRIs. Except for the construction and the noxious chemical smells that are coming from down the hall. Fortunately they only work until 6 and it fades when they close the door. The tech pokes her head out and says Bella is doing amazing. She even passed up the first break.

Bella and Ducky

 She comes out a couple times after that and we walk down the hall and get a drink. She is so much more relaxed. I'm glad it wasn't as bad as she feared. She wants to see outside, which I find fascinating. We walk down the hall and I warn her it's dark out- so we can't see much. Overall she was pretty quick- less than 2 hours in the scanner. She is the shortest one- so that helps. Phillip is gonna take AWHILE. She picks Taco Bell for Dinner so we make a run for the Border. We chase that with a McDonald's ice cream cone. I thank her for going through it. I know it's not normal, easy or fun and I appreciate it. I'm impressed- I knew she could do it- I'm glad she did so well. 

Proud of this Kid!

Tonight is Phillip and tomorrow morning Kiera. Phil has Phillip duty- which after an overnight alert shift last night means he'll probably get a good nap in the waiting room. 

I don't expect to hear about the kids results right away- hoping maybe to catch up with the radiologist on Saturday. I'll give him time to make the formal reports and call the oncologist next week. Thank you for keeping us in your thoughts, I definitely appreciate it.