Monday, January 24, 2011

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 :)

Thursday, January 20, 2011

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 :)

Thursday, January 6, 2011

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'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: