dreams

this post is not about masey. wow, that feels so weird to type! he is at home now, and doing so so well!  read his blog for an update

this post is about me. it's also about one of my best friends in the entire world. it's also about one of my fondest dreams.

the story i am going to tell is not one i share with people. ever. in fact, it's one that i usually try my best to hide. it's something that my subconscious mind thinks of as shameful. it's something that i am sharing because it just feels like the time...

best friends are a tricky thing. everyone needs them, but by having them, we open ourselves up to get really hurt. people who know us the best also know what low blows can be said in a fight that will hurt the most. i had one of those fights tonight, and it was not a fun thing. i guess i should start a bit farther back though.

i have always loved children. since i can remember, i have wanted at least 10 kids. more if possible! i wanted my kids to have lots of siblings, and to all be close in age so they would always have playmates and friends. i planned names for them, practiced with the neighborhood kids and any other child/baby i could get my hands on!

that all changed when i was 16, though. i received the most devastating medical diagnosis i could imagine. i was told i would not be able to have children, and if by some miracle i did, it would only be through intense infertility treatments. not only was it incredibly devastating to me. it also seemed shameful. something i was terrified people might find out about me. a stigma i did not want.

i knew that the diagnosis left the possibility for children through infertility treatments. but i also knew it did not leave the possibility for 10 or 11 or 12. i got tunnel vision and could only think about the first half of the diagnosis. as far as i was concerned, i could not have children. my world had ended, and i fell into a deep depression. i did not recognize it at the time, but looking back on my life, i see the path depression left. my grades and attendance plummeted. my relationship with my family suffered. i ended up dropping out of high school the week of graduation. i was too busy feeling sorry for myself and being angry at the Lord to do anything, including finish high school.

i became a drop out statistic. i burned bridges with family and friends and did not care. i can't say i blame all these things on the diagnosis, and i cannot say that it is an excuse. but that is my story. or at least my side of it.

through this entire time, i did my best to not let anyone know about it. i did not tell my family, i did not tell my friends. i was ashamed--not only of the diagnosis, but of my behavior because of it.

now, i guess we can fast forward to current day. the depressive streak is past. i have chosen to focus more on the fact that children can be possible than that they most likely are not. the shame is past, though i still have not chosen to share this with many people.

what is not gone--but i wish was--are the fears. the ones that lurk in the back of my mind in a quiet room. the ones that go the deepest. the ones that say i will never have kids. that i will never find an eternal companion. that not being able to have kids will never even be an issue, because i will never marry. those are the fears that were played on today by one of my best friends (who herself is a mom).

and it just felt so unfair.

miracle hospital

since masey has been at primary childrens medical center, i have been making a list of a few things i love about this hospital:

• they treat any child, regardless of their parents ability to pay, and with payment (or lack thereof) not factoring into treatment
• their motto, the child first and always
• the room service menu. there's no cart full of pre-made trays for the patients. it is an entire menu of food items the child can pick from. you simply call the number, and they ask what can i get for mason? then you order. an aide brings up his tray. you can order as much or as little as you like, as often as you like. when mason had special diet restrictions, they brought him a menu with only approved items, so he wasn't seeing things he couldn't have. many times, they have brought up a single banana or a cheese wedge. also, if we were eating something from the cafeteria he wanted, they would plate it up and bring him some
• slushie machines on every unit
• wednesdays, there is a hospital-wide bingo game. every kid gets a prize (last week it was a mr. potato head, this week a snoopy doll)
• xbox 360s in every room
• toy closets on every unit, and an enormous toy room on the 3rd floor
• an entire staff of kids crew volunteers who will play with your child, do a craft, keep them company if you leave, bring him toys, play with a sibling. 
• therapy dogs
• child life specialists, certified child psychologists who help not only understand procedures, but attend them with him and talk him through it; deal with homesickness, and conduct the best play therapy ever.
• laundry rooms for the parents with laundry soap provided
• sleep rooms for the parents
• visits from personal pets (mason's doggies) for terminal and long-term patients
• primary lessons at the bedside
• a quilt on every bed
• buddies, the dolls the child life people use to help mason understand all his tubes and wires. 
• the nurse who let him have no leeds on since yesterday because he told her he hated them and never wanted them again
• the nurse who fought to be our nurse because she loved masey so much
• the neurosurgeon who let mason have his catheter out and hour after surgery because he asked for it
• patient care techs who also serve as waitresses for the parents
• volunteers who bring a cart full of instruments round and make up silly songs with the kids
• the hospitality cart, brought round every morning full of doughnuts, coffee/cocoa, muffins, bagels, juice and fruit for the families
• music performers in the lobby almost every night-harp, piano, violin, classical guitar, cello, flute, viola-you name it, i've heard it.
• pene can sleep/lay with/cuddle with mason any time he wants
• nurses, aides and doctors who will still gladly work around the many balloons and decorations up from masey's birthday on monday

this is just a short list of the many things i love about this hospital. i have always felt good about pcmc, but having masey here, i am now a true believer in this place. miracles happen here all the time, and kids are healed. it's a sad place inevitably, but it's also a place of miracles; full of people who truly love kids.

december 1st-4th is the festival of trees here in utah. i encourage anyone in the area to come see the trees, or buy a tree if you are so inclined. we will be decorating a tree next year. and you can bet i'll be going to the festival this year, and every year after. every penny raised goes to pay for children whose parents cant afford treatment.

this is thomas, masey's buddy. yes, he has a drain in his head also. yes it is really stitched in just like his. yes, he does have a board on his wrist to immobilize it just like masey. yes, that is a real iv, put in with a real needle by masey. and yes, masey loves him. a lot.

there are some really awesome updates on masey's condition and length of stay, etc. but i've been banned from updating before pene. so, stay updated on http://masestumortales.blogspot.com/ or check back with me tomorrow :)

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: