you know you're my saving grace

i have started this blog post three times now (this is four) the first one was lost because my computer crashed. the rest just didn't say what i wanted them to. so, i am starting again from scratch.

i think this post is gonna be about my sister, penelope. she is so many things: talented, compassionate, creative, and most of all, an amazing mom. right now, she is laying in a hospital bed with a very sick three year old boy. she's playing him some of hers and his favorite songs. they are all good songs, but the one that sticks out is the one she passionately sang over and over to her sweet boy.

we've always been pretty big beyonce fans in our family. destiny's child was awesome, and beyonce never made a song we didn't like. however, it's common knowledge that penelope has the rights in our house to halo. she has loved it since it first came out, and as a result, her baby adores the song. he knows every word and sings along to it any time it comes on. its his mommy's song.

listening to her passionately sing that already emotional song put me over the edge today. my baby sister's baby is hurting. a lot. but so is my baby sister. its a hard process to watch; one that makes me feel helpless every day. i can't imagine the pain she is going through, watching her baby boy changing and suffering so much. through this all, she remains an example to me. still faithfully saying her prayers, watching uplifting movies about trials, and being there for her baby.

pene has always been the best mommy imaginable. she makes crafts with her baby. she plays fun games, sings songs and cooks with him. she takes him on walks and they go on adventures. they go hiking up the canyon and letter boxing. she takes him swimming and to visit family. she taught him to love the lord and love the scriptures. she sets the example of prayer and church attendance. when he is older, she is going to homeschool him. and i have no doubt he will remain the smartest kid i've ever met.

this sweet boy is waiting for his 2nd brain surgery in 8 days. it's scheduled for tomorrow. they want to try to get the tumor volume down below 1.5 cm3, decreasing the amount of radiation necessary to cure him. the hope is that he can be out of the picu by his 4th birthday on monday the 15th, and in for another surgery the monday following that. then, we've got about 10 more days until radiation starts. 5 days a week for 6 weeks. following that, we'll start 12 months of chemotherapy. i have never been happier that Christmas falls on a saturday. radiation on Christmas is just plain mean.

through this entire process, penelope's baby has been poked, prodded, and flat out hurt more than any child ever should. but he remains the polite, sweet boy we know. he's constantly thanking the nurses and throwing out you're welcomes to people who thank him for the blood sample he just cried over.

today, i was able to watch my sweet nephew sing along to one of his favorite songs, single ladies. his weak little body couldn't even keep his eyes open, but he was able to whisper the words. i know that he yearned to be able to hop up and sing/dance like he used to, but he made the best of it and sang his little heart out. it made me regret all the times he asked for single ladies, but i was too sick of it to play it again. it made me regret a lot of missed opportunities i had with my sweet nephew.

i am nervous about his surgery tomorrow. nervous that my sweet nephew might not be able to sing and dance to his favorite songs anymore. nervous that he will not recover as well from his second surgery. nervous that he will be still recovering over his birthday. but most of all nervous that my sweet baby sister might have to find a way to live without her baby.

it's only a 6 hour surgery max (i never thought that would seem short) and the surgeon is much more confident this time around. but it still worries me. brain surgery is brain surgery, and as the surgeon pointed out, there is still the possibility for stroke, permanent brain damage, massive blood loss and loss of motor skills and muscle control. all of those things scare me, but none of them scare me as much as not having this sweet boy in my life.

tomorrow will be another day full of prayers, fasting, and pleading for this sweet baby. a day full of keeping faith in the surgeon's trained hands. keeping faith in mason's immense strength. faith in his ability as a fighter. a day full of faith in the power of the priesthood, the Lord and His miracles.

the game of our lives

it seems like the story of my life lately is waiting. we waited for masey to go into surgery. waited for updates. waited for him to come out of surgery. waited for him to wake up. waited for him to move out of the icu. waited for him to start eating. still waiting for the pathology to come back. waiting for the final word on the treatment plan. waiting is the story of masey's poor life right now.

masey is doing really well. he has been up and taking wheelchair rides, directing us on those rides and getting projects out of the craft closet. he has been moving his neck on his own. he has been awake more and needing less pain medicine. but he is still waiting. he is waiting to go home. waiting for people to stop poking him. waiting for his head to hurt. waiting for visitors. waiting for the time when he can eat without throwing up. waiting to find out if he can go home for a few weeks before starting chemo. as many things as it seems like i am waiting for in this process, it is nothing in comparison to what masey is waiting for.

right now, masey is in the in-between phase. we were told that the magic number for chemo or radiation to start is 28 days post-op. so, we've got a while until the next huge step, but we are also without a final diagnosis, so we are stuck waiting. the waiting game does not seem that bad, though, with masey here. with this sweet boy around, none of the waiting matters. i would do it forever for moments like these:

night nurse

mason is my sister-son, or my nephew. either term works. mason lives with us. he is the sunshine in my day. i wait for the moment every day. the moment when i hear his little footsteps running up the stairs to yell my name and jump into my arms. good morning, auntie latu!  he yells. i'm hungry for saimini he will say, or is it ok if you share with me? eying my cereal. later in the afternoon, he will interrupt me with um, auntie latu? i have to tell you something. i love you! my masey is my buddy and by far the highlight of my day. he is the brightness of our entire house. and he has a brain tumor. i said it. it kind of feels liberating. i made it official by pronouncing it to the universe.

on thursday morning, masey went in for emergency brain surgery in what everyone assumed was a fools errand, to remove the tumor. amazingly, surgery went well. way better than the doctors expected it to. masey is also doing way better than the doctors expected him to. he is out of the picu (pediatric intensive care unit) and on the brain trauma unit. things are looking up every day for this kid.

within an hour of waking from the 11 hour brain surgery and having his breathing tube taken out, masey's personality was already shining through--he was requesting thomas the tank engine. it was such a relief to know that he is our same masey, and fighting like crazy to beat this. the doctors and nurses are all shocked at his progress. to be out of the picu not even 48 hours after surgery is amazing, and he continues to improve. he has not needed nearly as much morphine as expected. in fact, he has been refusing it. the nurses love his personality, and he is making an impression on everyone who walks into the room.

as i sit here, playing the role of night nurse, i just want to gush on and on about masey's progress. but i realize that none of that is relevant without the following knowledge: 


masey is the recipient of a miracle.

none of the neuro surgeons expected him to leave the o.r. alive. but here he is!  the fact that he is here is a testament to the power of prayer, the power of fasting, but most importantly, the power of the Lord. wednesday night and thursday morning, my world looked hopeless and bleak. i prayed and tried to have faith. i knew there was a God, and i knew he could spare my masey's life. but i was terrified that he would not. i was terrified that my masey would be stripped from my life. the thought was paralyzing.

but, the Lord is good, and it was not masey's time to leave. so, he was spared. now, as i sit next to his bed watching guard over the night, i am overwhelmed with gratitude. in times like this, you are forced to re-prioritize, to decide what is really important. is getting my hair cut really that important in the grand scheme of things? is the carton of eggs mason broke onto the floor, trying to cook really that big of a deal? how about family prayer and church? family home evening? school? rugby? there are so many things i am now reconsidering. so many things that seem frivolous. so so many that need more attention and priority.

i need to be a better auntie, sister, daughter, and friend. i need to devote more time to my family. not just time in the day when i am home, but actual time spent interacting with my family. i need to be a better, and more supportive, understanding friend to my own friends. i need to let the little things go and stop arguing over stupid stuff. i need to appreciate my nephews and the princess more. because life is fragile. if there is one thing i take away, it is that knowledge.

in one morning, masey went from a bundle of bouncing boy with limitless potential, to a dying child--something you saw on st. jude commercials, not a reality. it was a hard reality to swallow. we had a matter of hours from diagnosis till surgery. a few precious hours to enjoy our masey boy. we knew the odds of him coming out alive. we knew the odds of him coming out with his full brain function. we knew the odds, but were praying and pleading that he could beat them.

and beat them he did! i know this journey cannot always be without speed bumps, and i know that he is definitely one of the lucky ones. i know that his brain still has to heal and he could easily get an infection. i know that he will likely need chemo or another brain surgery. i know that this will not be easy for us, and it will be extremely hard for masey.  but somehow, watching over him tonight, i feel confident about all of those trials. masey is a trooper. he is a figher. and he will win. he's my hero. and he is a miracle baby.

the before shot

the after shot

my masey

this post is about my darling nephew mason. sometimes i call him masey. some times i call him masey mase. some times i call him mason vili. sometimes i call him mae mae. sometimes i call him sione.

no matter what name i call him, he is still my masey. 

what is there to say when your world feels like it is crumbling down? today, my life changed forever. quite literally. i have always been dramatic, but there is no drama added to that last sentence. masey was the nephew i did not appreciate enough. you see, he lives with us, and being the brat i am, i took his presence for granted. this post is full of pictures of my masey. feel free to leave now if you do not want to see them or want to use them inappropriately (they are all the property of Penelope Lolohea Photography)

i love my masey. today finds him in the hospital, awaiting brain surgery in the morning. tonight, he was perfectly normal, telling us he is ready to go home and he is tired of the hostable. he was wondering where his nice nurse was, and why she wasn't bringing another root beer float. the only indications anything is wrong are the wires running all over his body and the fact he barely touched his macaroni and cheese. otherwise, he was quick to let us know he was ready to go home so he wouldn't be boring anymore. tomorrow will bring with a lot of challenges and trials for my masey. luckily for him (and me, i am not sure i can live without the kid, and i know i do not want to try) masey is a fighter through and through. for tonight though, i just want to talk about my masey because i love him. a lot.

it took a day like today to remember all of the tiny things i adore about this boy. i adore that he plays until he drops. he loooooves thomas the tank engine and anything thomas-related. i love that he knows every single engine, car, truck, or freight train who ever appeared on the show. not just their names, but what they look like, what type of train they are, what number they are. you name it, masey knows it. he is not afraid to correct you if you draw james or henry without tenders (yeah, at 24, i did not know what a tender was until my 3 year old masey told me)

i adore how awesome this kid knows he is. they named a  whole grocery store chain after him, and placed mcdonalds chicken nuggets in the world for his benefit. he gags at the thought of grilled cheese sandwiches, but loves spaghettios and macaroni and cheese. masey loves water, but not quite as much as he loves rootbeer. doughnuts and cookies are things he craves all the time. he knows that if he wants a yes answer, he just has to go to papa, who will give him a resounding yes answer. 

masey knows his manners and is always polite, even if he is growling the please at you through clenched teeth. he has yet to have a cavity and loves going to the dentist because they have a railroad track (even though the train is broken) masey loves the Lord and absolutely adores the book of mormon. he is fascinated by the stories, fascinated with the people and the decisions they make, and fascinated with the gospel. he loves church and primary and all his friends. 

mostly, though, masey loves his family. i think he adores us almost as much as we adore him. he constantly comes up to me and says um, auntie latu? i have to tell you something [dramatic pause after i answer him] i love you!  or he will come up to me after work and proclaim i missed you so much! masey is so good at loving and recognizing his emotions. tonight, as i pray that the world prays for my masey, i just want to add and add to this list. the things i love about masey are without number. i just adore this kid and am so blessed he is in my life. 

a truth of my own

well, i was invited to a halloween gno. one of the requirements for entry is a blog post about yourself, printed and brought. i'm not sure if i can make it to the gno, but i sure was interested in posting about myself. it's one of my favorite things to do!

my name is latutama. i was born in salt lake city, utah on a beautiful spring day in 1986. one day, i am sure i will not want to reveal my birth year, but for now, i am ok with it. 24's a great age to be!  i did all the normal things growing up- soccer as a child, baptism into the church of Jesus Christ of latter-day saints at 8, school from ages 5-18, some more school after that, work after that, etc. i guess the things that are not normal are the in-betweens. the story everyone really wants.

school has always been easy for me. i was blessed with a sharp mind, and the ability to express myself through writing. when i was in high school, i discovered that writing was an awesome stress reliever. back then, my writing was largely unseen by others. i would write a poem or paper (i called it prose, haha) and hide it away. the emotions and thoughts i wrote were far too personal to chance anyone else reading it. as i have grown older, i have learned to express myself without getting so personal i couldn't let others read it.

i adore talking about myself. that is almost the biggest reason i have a blog (see the paragraph above for the single biggest reason) being understood by the people i love is big for me. if people i don't like misunderstand me, i could care less. but i hate the thought that someone i love will do it. thus, i blog.

i was a headstrong, stubborn, bossy child. the only thing that has changed as i have grown older is that i have figured out how to take advantage of those traits. i can turn them on and off, depending on what the situation calls for. i am extremely good at reading people and manipulating them. sad to say, but i am. if i can get a foot in the door and get a job interview, i can get the job. i interview really well and people come out of interviews really liking me.

i like being right, and argue unrelentingly until i prove my point. it is annoying for the people around me, and annoying for me. arguing and having to be right is one of the few character flaws i don't have under control. i can physically stop myself from arguing if i want. but i cannot stop my brain from finding ways to prove my point. it drives me crazy that people might not know i am right at all times. but it really annoys me that i haven't figured out how to stop that thought process earlier.

i procrastinate. a lot. if something is stressing me out, or i am too busy to deal with it, i am great at filing it away in my mind and not thinking about it. that usually leads to procrastination. not always on purpose, but when i file something away, it's completely out of my mind. i have to be reminded to do it or deal with it or it never gets done.

all i have ever wanted was to get married and have tons of kids. i am not sure how it happened that i am the only girl in my family to make it past 19 without being married (and 21 without kids...) but i did it!! in a lot of ways, i am not ready to be married or have kids. i love being unattached, being able to do whatever i want without having to check with my husband or find people to watch my kids. in a lot of ways, though, the clock is ticking down. my single days are numbered. i know this, but i really want to just have fun while i can.

i adore my hair. it gets sun bleached in the summer, and darkens in the winter. it has redish/blondish highlights, which i love. the best part about my hair, though, is that i can shower, brush through it once, and not touch it again and it is perfectly straight. i adore it, unless i am trying to curl it. then it really sucks. for my sister's wedding, we had to pin it in ringlets, because no matter what we tried, it would not stick in curls.

i play womens rugby. i love rugby. rugby is the first time in my life that i have been able to be aggressive and strong and been able to tackle people. i love that i can play rugby and still walk off the field a girl, still be as girly as i want at home, but be really good at something so physical. rugby is the first sport i have ever loved. i played other sports, and enjoyed some of them, but i love rugby. rugby has taken over my life, but i have no regrets about it. i  ♥ rugby

i am ocd. another sad, but true paragraph. i obsess about things. a lot of the time, it is food i am obsessing about. i find a food i like, and have to have it all the time. usually, it turns out to be about 5-7 times before i am done obsessing about it. any time i am hungry, i want that particular food. after the 6th or 7th time eating it, i just stop craving it. i don't hate it, and would still eat it if i had the chance. i just don't need to track it down anymore. at one time, i was a counter. my number was 3. i loved things in multiples of three. one of my compulsions was counting things, especially car lengths and stride lengths. it made my world calm if i could neatly fit three car lengths in a certain space, or three strides in a space. i also had to tap things. if i was extremely stressed, i would need to tap every box of cereal in the store. less stress meant i could get away with just tapping one of each kind of cereal. i don't like getting dirty. unless i have already accepted that dirt is a part of my current environment. thus, while camping, i will sit anywhere, do anything and not worry about the dirt or bugs. when i am picnicing, though, i have to be careful. dirt is not a part of picnics!

wow, this post is long. but i told you i love talking about myself! one more thought before i stop, and an explanation of the picture. i have a camera smile, the one i like in pictures of myself. it is very different from my unplanned, real smile. my sister likes my real smile, and it seems like it is her mission in life to catch it. the following picture is an in-between smile. i had my picture smile on, and my sister made me laugh, so this is the mixture of real and fake. it's not very pretty, i know. but, i felt it was worth documenting. especially cause it's already tagged of me on facebook. :)

super powers

i was talking to my sister yesterday about her son who is in kindergarten and his first experience staying home sick from school. long story short, he regretted wanting to stay home about 10 minutes after making the choice (when he found out it would not be a fun-filled, play with friends kind of day!)

it made me think of when i was younger and would convince my mom i was too sick to go to school. when i was too sick to go to school, my mom would put me through a cleaning test. she told me she could tell by how i cleaned if i was really sick or just pretending. believing my mom to have super powers (because she only put me through this test when i was faking it) i would diligently clean all three or four rooms assigned, all the while, making sure to milk the illness. i would pretend to struggle pushing the vacuum (i was so weak from being sick!) and have to take a breather after every few times bending over. sometimes, i would crawl across the room to pick things up. folding blankets took an eternity and dusting made me cough frantically. i thought i was putting on quite the act.

it seemed to work every time!  my mom was buying this crap!  its only now that i look back that i realize my mom just wanted a clean house. she didn't as much care if i was really sick, i was making myself useful at home.

for that creativity and so many more reasons (i'm remembering pick up contests with my siblings-- whoever picked up the most rubbish or toys off the floor won; quiet wars and quiet time) i love my mom. hopefully one day, i can convince my own kids of super powers like hers!

magnet

my grandma was one of those people. the kind everyone wanted to be around. no matter where she went, she would draw a crowd. she was like a magnet. people would drift toward her. if grandma was going to be somewhere, or at some event, it was enough reason to go also.

one week ago today, i experienced that same feeling, only it was not with grandma-she's long gone. this time, grandpa was the one creating the magnetic field, gathering our loved ones around us. it happened at my brother's football game. before it clicked, i watched as wave upon wave of family came walking up to our spot on the bleachers. sitting there, surrounded by family, i listened as they each chatted and caught up with each other. i loved it, it felt so much like home. while watching the kids play on the hill, i realized why i loved that feeling so much. it has been years since my grandma's been around. last thursday, i felt the same feeling i used to feel when she was here.

i'm so glad that my grandpa came down to watch the game, and so glad i got to see all my family!

grandpa with all of the kids (that's sweet elise behind the sippy cup, lol)