pay it forward

yesterday was masey's 4th birthday. he's such a big kid now, and still so brave. all day, he was grouchy. the nurses would talk to him and he wouldn't answer. he refused to cooperate with the physical therapists or anyone else who came in the room. i can't say i blame him, he was mad he was at the hospital for his birthday! he kept insisting that his birthday was tomorrow, because he's convinced he is going home tomorrow.

about 2 in the afternoon, we got a knock. we could tell it wasn't a hospital employee knock; very few of them ever knock and the ones who do tap the door then walk right in. this knock was loud and waited for a reply from us. it was refreshing!

on the other side of the door was the sweet girl two rooms down, G, and her dad. in her hands was an adorable stuffed dog and a bunch of balloons. her dad explained that it was G's birthday a few weeks ago, and she knows how sad it is to have a birthday in the hospital. so, she wanted to stop by with a gift. i could barely hold back the tears when they told us that. it was exactly what masey needed, to know that someone knows what it feels like. we quietly woke him up and hoped that he would be nice, and he did not disappoint! he was so gracious and happy that he had a dog. all night, he kept saying i love doggies. i love my doggie!

it was sweet, and not something she had to do. but it truly made a difference in masey's day. as i explained to him that G knows how sad it is to have your birthday at the hospital, i could see it click in his mind. he got it. i have felt since his second surgery that all of this can really benefit others beyond our family. i thought it would need to be something huge, but after meeting sweet G yesterday, i realize it's the small things that really count.

i hope masey grows up to be as sweet, thoughtful and kind as G, but i am sure he will not disappoint. he's a sweet kid already, and i've decided it is my role to help him always pay it forward.

scars

WARNING:  NOT ONLY AM I TYPING IN CAPS, BUT THIS POST HAS PICTURES OF SURGICAL SCARS. read on only if you wanna see em :) as a side note, the orangy, blood-looking stuff dried on his head is the iodine they cleaned it with, not blood.

also, my sister pene has started a blog for masey. it includes a counter on the right regarding his stitches, scars, etc. check it out.

so, every time i have worried during this process, things have turned out fine. i worried for masey's first surgery, and he ended up recovering very well. i worried about his drain, but same story. it has been basically the same story for every little and big event in this process. the most recent one is his second surgery.

i was not as nervous going in as i was for the first surgery. i knew what to expect in a brain surgery. i knew the time would not be as long as the first one. i knew the surgery itself was not as intense. i even knew (or maybe hoped) that the recovery would not be as long. they went in through another approach into masey's head and in the surgeon's words, were more successful than planned (and they planned for a lot!)

long story short, he is out of surgery, fine and recovering more quickly than from the first surgery. he's in a lot of pain, but it seems like the only real side effect is the awesome new scar on his head. i feel like if all he comes out of this with physically is a couple scars and maybe a shunt, we've hit the miracle jackpot.

well, this is a 4am post, and i'm kinda tired. it's too late to think of anything very profound, so i'll show you the pics.

here's the scar from his initial brain surgery:

and the second approach:

and both together:

and his vampire bite along with evd (drains fluid from his brain) and one of many screw holes:

chiefi

masey got a visit from a four-legged visitor last night. we received permission to have chiefi (either of our dogs, actually) come visit him. masey was in heaven. it was two hours in this entire week from hell that he was able to have a piece of home and forget about the hospital. as he went into surgery today, i was so happy that if nothing else, masey went in having full-on giggled last night. (he has not so much as cracked a smile since being here, and who can blame him)

right now, i am in the surgery waiting room. it is outpatient/inpatient. i remember now why i didn't want to wait here last time. this morning, the room was full of parents waiting for their kids. it's 11:49 and the room is only about a quarter full.  watching most of these people sit for 45 minutes to an hour and then recover for another hour before taking their child home is hard when i know we have hours of surgery, and days or weeks of recovery with masey.

usually, it is so easy to remember that there is always someone who has it worse. but right now, in this waiting room, i have to constantly remind myself to not feel sorry for myself or masey. to not compare my situation with someone else's. to be humble that masey might be blessed. to spend my energy praying and pleading for a miracle rather than concerned with anyone else.

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.