it's back!!

well, masey is the small-talk topic of choice lately, and i can't really blame people. i'd be super nosy about it too!  every time someone asks how he's doing, i feel guilty if i say anything but 'fine' or 'good'. i mean, really, the kid is extremely blessed just to be alive! is it bad luck to bemoan the struggles?

do people really want to know about how he is wasting away before my eyes, and refusing to eat. do they want to know about the surgery he is going to need to repair his paralyzed vocal chord? do they want to know about him choking on liquids and all other foods? about how we have to wait at least a month before he can get into the schedule to have this surgery, and then hope it's before his next course of chemo. otherwise, he will not be able to have it for a few more months. i feel like this is coming across as bratty. i don't mean it that way. i just really don't know how much information people want. so, for all you out there who have asked about masey and i've said 'he's fine', that paragraph is the truthful update. here is one more:

remember this?

yup, masey's sporting the feeding tube again! the blessing/curse has returned!

masey hated his feeding tube the first time around, and putting it in was traumatic (nose bleeding, scratching damaged throat, being held down by strangers, etc) he has dreaded the thought of it ever since. the fear of a feeding tube has often been the only reason this poor guy will gag down his (rather nasty, i might add) medicine.

but he's also lost over 11 kilos since coming home from the hospital (for all you americans out there, throwing a fit about the metrics, 11 kilos is about 24 pounds.) don't believe me? compare:

and these pictures only show his face. lift up his shirt and it's easy to see that this kid is skin.and.bones. he has lost every ounce of baby fat he had, and a lot of muscle mass. this little boy, who was always deceptively heavy and solid, is now anything but. at 115cm (3'9" haha) masey's current bmi is 15.1, which is quite underweight. (especially compared with the 23.4 it was in the hospital)

wow, i kinda got off topic!  back to the real topic of this post, that lovely tube stuck down masey's nose/throat. here's a list of reasons the feeding tube will really help masey, no matter how traumatic it was to insert it today:

• pneumonia. or i guess preventing it. he had pneumonia in the hospital, and with his lowered immune system (thanks to the radiation and chemo) it would be life-threatening to get it now (oh yeah, why does this apply to the feeding tube? because of masey's vocal cord paralysis, he has been aspirating-or inhaling-liquids, which can build up in his lungs and cause pneumonia. throughout his course of treatment-for the next year-masey will take antibiotics weekly to combat this. eliminating the risk for additional liquid in the lungs will go a long way to preventing pneumonia.)
• hydration. any liquids masey drinks must be thickened to more than honey-thick. not only is this nasty to drink as far as texture goes, it is nasty because his drinks are more than half thickening agent, which tastes gross. the tube will keep him hydrated.
• it's an ng tube, not the nj tube he had before. this will help him feel full and rely almost solely on the feeding tube, protecting his throat. 
• nutrition. not much tastes good to masey lately. this will let him get nutrients, and hopefully gain weight and bring his counts up. (the levels of red blood cells, platelets, but most importantly, white blood cells in his blood)

anywho, as much as i would like for this to all go away (masey, too!) i am so grateful that masey is here, and is such a trooper. he's the strongest kid i know, and i kinda like his new addition :)

almost 4 down...

well, it's almost been 4 years since i started this blog (i guess 3.5 is more accurate) i started it just after my grandma died. i desperately wanted an outlet, and physically writing was way too much effort :)  so, i decided to keep an online journal/blog.

this past weekend, talia gave me a journal i got at girls camp in 2007. i wrote a few entries at camp, but most interesting to me was the last entry i wrote. it was dated july 24, 2007. the day after i wrote this journal entry, my dear grandma would lose her battle with leukemia. interjections from me today will be in purple, because i am very fond of interrupting myself :)

before i start, though, here's a picture for those of you who don't want to read on :) it's of my daddy, me, and my sisters back in 2004. i've never seen this picture before, but i looove it.

~~~~~~~~~~~~~~~~~~~~~~~~~

well, maybe i'll finish about girls camp later, but now i really want to write. i've decided that writing is an escape for me, my thoughts, and just everything. sometimes just out of nowhere, i get a really strong desire to write. today, on pioneer day, we (mom, dad, pene, mase & darl) went to ogden to see grandma. we found out that grandma's decided that she will not be taking any more transfusions, or treatments. it makes me so sad & it has not even set in all the way. it's surreal, life without my grandma. i honestly cannot imagine it. she's been such a constant in my life, no matter where, who or what. she raised me, cared for me, loved me & was always there with advice, love and concern. i felt more like she was my mom more than anyone else in the world besides my mom. until tomorrow, when grandpa decides where grandma's going, i am going to write some of my favorite memories (of grandma)

singing burrump went the little green frog, hickory dickory cranery crow and froggy froggy how are you?
shirley temple movies
graham crackers & frosting sandwiches for summer fun (a summer program) in our own personal little coolers
2nd grade, when i changed my bangs and smiled retarded in my school pictures (both things grandma had told me not to do over and over the morning of pictures. i was pretty sure i was real cute. turns out, i was cute enough to not even buy pictures that year :)
stopping at foodland and then eating lunchables on a huge log while grandpa did work at scout camp
the newsletter weekly (grandma wrote sporadically her last few months)
grandma waking us up with the piano
playing church music on the black stereo every sunday
how beautiful she is
her hassell blue eyes (my grandma had the most striking blue eyes. in fact, so did every one of her siblings and most of their kids. we call them hassell blue after her family)
going to bluewater (a tiny town...actually, it's technically a village, in new mexico where we're basically related to everyone and my grandma grew up)
her patience
her teaching pene to read with the book of mormon (she would have pene look for and highlight specific words during sacrament and at home-Lord, and, thus, etc)
her blue, cool room in hawaii (her bedroom was the only room in the house that had an air conditioner. it was always so wonderfully cold in there)
the tree house (their house had the most amazing tree house with three floors. it was built into a huge tree on a hillside. i fell out of the second story once. it was awesome.)
the convertible (she had a convertible because she was just that cool. in fact, most of their cars were awesome. i remember marveling at how rich they were b/c their car had shoulder belts in the back seat)
going to savers and garage sales
her 800 number (to make sure her family could always talk to her whenever they wanted [and without paying long distance charges] she got an 800 number. i don't even remember when. for as long as i remember. we could call grandma any time, any place and chat it up with her, complain about how unfair something was, or just check in.)
putting dolls on timeout/taking them away (she would take our dollies away when we were mean to them. she'd tell us cps came and got them. only when we could prove we would be good parents would she give them back)

there are so many other things i love so much about her but i'll stop for now. mostly, i just love her. i love her shining points & her short comings. i love everything about her. she's had such an overwhelming influence on my life. i cannot imagine it now, but i know that the Lord is in control. as hard as it is to think, this is part of his plan. my life will continue to go on, with or without grandma. it will never be the same, and i know it is going to be so hard to say goodbye & let her go, but in the end, i know that it is not the end, just a pause on our relationship. as hard as my grandma's death will be, i absolutely know that families are forever. on that hopeful thought, i am going to go! (me too :)

be smart

well, it feels like the past few days have flown by, but been years long at the same time. i have felt like i should go back to school for quite some time now. i always had an excuse why "now" is not a good time. it's the same story as every other time in the past 4 ish years that i got that feeling. always a bad time, not enough money, no classes open, too busy, even masey's cancer. you name it, i used it as an excuse to justify not enrolling in school.

it feels like this is a continuing theme in my life :)  well, i am now proud to say that, despite being told by my academic advisor, someone in admissions, someone in collections and my own mind that i would not be able to attend school this semester, i am starting classes tomorrow. i do not plan on stopping, and i in fact refuse to stop. i've seen so well how i get complacent with not going to school, convince myself i'll eventually go back and then never do. i am truly exhausted of that. my mind is wasting away, with nothing to occupy it. anywho, the story of how i got everything in order to go to school could take a long time, and it seems like such a blur now. but i truly am blessed, and i know that this is the path the Lord would have me take.

maybe i'll tell it another day. for now, though, my list of things i wish someone had told me when i was in high school about college:
there are other ways of going to school besides getting great grades in high school and a full ride, academic or athletic scholarship. i remember the day clearly when my uncle made me realize that i could go to school without those things.
books cost a lot of money, and you rarely use them. selling them back is like walking a tight rope...it's only possible if a new edition (read: 4 new pictures and the order of the quizzes/chapters are switched up) has not come out, and you are willing to get a fraction of the purchase price back.
open admissions.
community colleges/state universities. they are not just pathways into a better school. you can get a full-fledged degree for much cheaper.
12-18 credits cost the same. take as many as you can handle to save money.
having a disabled father, who is unable to work=lots of pell grants=no money owed. having this same disabled father will only be of use on your fafsa until you turn 24. take advantage.
fafsa. filling it out is required. also, very useful when you discover the above.
application fees and fees for act/sat are just the beginning-- and very small, looking back.
concurrent enrollment and ap classes really do pay off, and are worth the small fees (see above)
study well for the act/sat. testing out of math is much better than taking math.
waiting years to take a math class sucks. and you forget anything you might have known. there is nothing more annoying than a college counselor pointing out to you that, once upon a time, you got an awesome score on your act math section. (and then letting you know that because you waited so long to go back to school, that score has expired and they will no longer accept it. hello, math 1010)
college is nothing like the movies (which makes me glad :)
college students are poor. like more poor than i can remember being.
student id = bus pass.
there will always be reasons to stop going or take "just one semester"off. not giving yourself that option is best. once you go from poor to working again, it's so hard to go back.
student health center. saved my life a few times.
the right counselor can help you overcome most holds on your record.
you can work on campus, and they are great at accommodating class schedules.
you can get more than one degree,in more than one field.
you are not limited to what you can study by anything but yourself.
start school as soon as you can, and don't stop until you're done. it's worth it.

well, i could go on about the things i wish i knew. but, i'll leave you with a picture of the baldy, masey boy.

i think he looks a bit like this guy:

medulloblastoma

Looking for information?  Medulloblastoma is not always the death sentence it once was. Read Mason's blog for updates on a happy boy, diagnosed with standard-risk medulloblastoma in Nov. 2010. 

my nephew masey has medulloblastoma. in case anyone reading this blog already does not know :) i guess i might be able to say had medulloblastoma. most of the things he's suffering with now are secondary to that beast of a cancer with the beastly name.

i've got so many thoughts about it, and i just need to share. if you want an update on him, his blog is always the best place. (he's doing very well currently, all things considered) after the last post i made, though, i decided to research myself. maybe it was a mistake. maybe i didn't really want to hear horror stories of cancer that comes back (medulloblastoma that reoccurs is typically terminal) or see awful pictures of the side effects from the chemo/radiation. maybe i didn't want to see statistics and hear the stories of kids who lost their fights with medulloblastoma. maybe i did. i am not sure there is an actual answer.

the day masey was diagnosed, his sweet nurse in the picu encouraged us to take pictures of him. to document it for him when he gets older. he was going into brain surgery the following morining. i thought she was being insensitive. you see; deep down, i was convinced he would not make it through the surgery.

i just did not see how the big old doctor could stick his hands into masey's 3 year old brain, suck out a tumor and still have things go well. i had seen the massive tumor on the mri. i had watched as the doctor calmly scrolled through the pics and i saw the flip book of the massive tumor. i could not imagine how masey was even alive with that thing in his brain. i heard the doubt in the doctors voice, and sensed his dodging the question of what will come after surgery. he wasn't sure anything came after surgery for masey boy.

i did not have faith at all in the process masey was embarking on. but i also did not have the guts to say it out loud. though it goes against everything i firmly believe (that the Lord does not punish children for the mindless babble that others say) i thought i might jinx the surgery by voicing my doubts.

but he did make it, through two of those brain surgeries. and if we're gonna be specific, he made out like a bandit. some kids are not able to talk or walk or really even move for months on end. some kids need a shunt just to be able to regulate the pressure in their heads. some kids need weeks for their brains and bodies to recover from surgery. masey did not need any of these things. every time a doctor would come in to examine him, they would comment on how well he was doing. in fact, the day before leaving the hospital, when masey rode past his neurosurgeon on the physical therapy bike, the surgeon literally exclaimed with amazement. masey has weathered it all very well so far.

but what does that mean for the future? as much as i firmly believe that masey is a fighter and can kill this (anyone who has seen one of his tantrums or tried to argue with him knows he wins everything he tries) there is the looming fear in the back of my mind that everything can't go well all the time. masey already has side effects from the radiation and chemo. he doesn't eat. its a struggle to get him to drink. his jaw hurts him and he is getting more clumsy. but those seem so small compared to the monsters i see in my mind. i feel like i am hoping for the best, but  bracing for the moment when the floor drops out from under us.

i am very grateful for masey's sweet picu nurse, jodi. her suggestion to document his treatment was heaven sent. every once in a while, masey will ask to look at his scar, or to see his birthday party. having pictures to show him has helped him so far, and i imagine one day, when he has a little boy of his own, he'll want to show his family a record of this amazing journey, and proof of the miracle we've witnessed firsthand.

any time i think about keeping a record or documenting or journaling, i thought of my sweet grandmother. in the year 2000, she started writing a weekly newsletter to her family, at first just her children but soon for many more family members and friends. she called it meanwhile, back at the ranch (i think after some line in a western. maybe a famous line from gunsmoke) it was the blog of 10 years ago, and served as her journal for the 7 years she wrote it. during the last 18 months of her newsletter, it served as a record of her fight with leukemia.

grandma always had a soft spot in her heart for masey. he was the only baby she'd ever seen born. she watched masey enter this world just a few months before she departed it. a few months ago, my sister began re-posting my grandma's newsletters for the family to read. looking back, i find it fitting that she had done that, as my grandma and masey share a very special bond beyond masey's birth. they both had cancer. the only difference is one was at the ending of a life and one at the beginning.

did you know?

well, i have solidly refused to look up any statistics or information on masey's type of cancer, medulloblastoma. my sister is not quite as against it. in fact, she is way too curious to not read all she can about it. usually i am that person, who sucks up information in the hopes that it will make a difference. i'm not sure why we've traded places. but, here is a short list of stats my sister put together. just a few did you knows, because you might have noticed the pretty new buttons on the right of my blog.

that's what i'm here for

well, my sister pene and i each have lots of strengths. unfortunately, few of our strengths overlap. i am great at expressing myself either through writing or conversation (arguing:) she is great at expressing herself through music, singing and photography. i am great at getting people to give me what i want, she is great at getting what she wants herself. i am great at winging things and never planning, she has the plans and lists down. two sides of the same gene pool.

since masey has been sick, it's been pretty useful. the doctors will come to talk to pene, and she and i literally hear two different conversations. i completely tune out things my mind does not see as important (i like to think it's the fluffy stuff) while she tunes out details. we will talk about a doctor visit after the fact and marvel that we both were present for the same conversation.

but, it helps eliminate the gaps in the information we are given. i am good at being the bad guy. when nurses are not doing something correctly, i am the nervy one who will confront them on it. when something needs to be done and isn't, it is me that finds the nurse and gets her to do it now. pene is good at gaining the compassion and dedication of the nursing staff. i am great at interrupting doctors to ask the questions that pene will not, or has forgotten. she is great at listening and taking care of mason during these visits. i am good at understanding what information a vague question is wanting and only giving that much. pene is good at giving the full picture. i am good at waking up with 5 minutes till we leave, hoping i have proper clothing on and going to masey's radiation appointments. pene is great at packing each item and knowing where and how many of each item she packed.

we always joke that there are some things that are just what i'm here for. i am here to ask the questions, manipulate people into giving us the things we want, and most importantly, make sure masey has what he needs. when masey had a horrific experience at the doctors, i knew that it was my job to hunt down the proper channels to get our problem solved, and let everyone possible know how enraged we were about it. i did not need to be told to allow my righteous fury to fix the problem. it was just understood. pene had the task of comforting masey and reassuring him that it would never happen again, as well as planning out the long-term battle plan. i got to let my anger out immediately, and argue any medical professional up to the challenge into a nice little corner. both things that fit our personalities perfectly.

despite our different personalities and strengths, it has been so nice spending tons of time not only with masey but pene, also. we did not always get along well (i guess at all!) especially when we were little. but, spending time with her lately has allowed me to appreciate the many strengths she brings to the table, and the amazing mom she is.

say it louder!

this summer, i remember one sunday where i was sitting in sacrament meeting at church with masey. he was being loud and disruptive. i whispered some sort of bribe in his ear. i'm sure it went something like if you're quiet, i will give you candy after church. well, mason did not care for the bribe. he continued on, ignoring that i had said anything to him. a few seconds later, i whispered a higher-level bribe. probably something like if you're quiet during church, i'll buy you a train. again, it was ignored. i tried the trump bribe, if you are quiet we will go to auntie lia's house after church. this got a response, but not the one i wanted.


say it louder! mason said.
you need to whisper in church, i reminded him.
say it louder! was his reply, but this time he was full-on yelling, and turned to look at me.
you'd better whisper in church or i'm going to throw away all your trains. was my reply.

the reply that got was sobbing. i ended up taking him out of sacrament meeting because he was being so loud. i had to console him that no, i wouldn't really throw away all his trains. we didn't make it back into sacrament that day, and i walked away from the situation extremely annoyed with masey. i was so happy to hand him off to his mom.

a few weeks later, we found out that masey is profoundly deaf in his right ear. the ear i was whispering in. the ear i got so angry he did not respond to me from. i felt like a horrible person for being so mad at him for something he couldn't help. the moment i was told about him being deaf, i immediately thought of the incident in church. it made such great sense now.

halloween day found me having just played a rugby game. (i guess i should call it mormon halloween. it was the day before halloween, which fell on a sunday this year) pene had left to take care of her calling, and it was my job to get masey ready for the trunk-or-treat. i thought it would be simple, he was so excited to wear his iron man costume. but he refused. flat-out, throw-a-tantrum, screaming and yelling refused. he said he was too tired, and too sick to go. over and over, but i continued to push it and refused to listen. eventually, at the direction of my mom, i left him alone and walked away from the situation.

4 days later, masey went in for an mri that would change his life forever. suddenly, like that fateful sunday, the happenings on halloween made sense. masey had a brain tumor. all of these symptoms made sense. the guilt i feel, knowing that i gave him such a hard time for stuff he couldn't help is sometimes unbearable. the only bright point is that masey does not remember either day. luckily for me, i am still his auntie latu and i can do no wrong.