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.

one perfect bubble

well, this is going to be the boring, lots of info paragraph. for the story, read after the picture :) tonight i volunteered at the 40th anniversary of the festival of trees. the festival of trees is kinda just what it sounds like. people or businesses donate trees, which are auctioned off. every penny made (by admission, buying trees, food or crafts) goes to primary childrens medical center, and families that cannot afford treatment. i worked at the sweet shop and sold candies, chocolates, pretzels, cookies and brownies to the visitors. tonight was a great night to work because it was the auction night and not too busy, so i was able to take a lot of breaks and see the trees. most trees are dedicated to someone and some trees offer explanations of the person's struggles or life story.

one, called one perfect bubble really stuck out to me.  it was simple as trees at the festival go. it was adorned with a few green, shiny ornaments and lots of clear glass balls. the picture of the baby had a bubble coming out of its mouth, which i thought was cute. it wasn't until i read the bio information that the full power of the tree hit me.

this tree was dedicated to a sweet baby boy. he had a disorder called trisomy 18, something that is close to my heart because i know someone who has fought her way out of her teens with trisomy 18. she has lived decades longer than doctors ever imagined. this friend's parents were told that she would not live more than days, the same thing the boy from the tree was told.

thats about when their stories separate. my friend's story is one of a years-long struggle and fight, defying all the odds. the little boy's story was an hour-long tale. his prognosis was not good, so throughout the last part of the pregnancy, his parents prayed fervently for just one hour with their baby. their righteous desire was granted, and they spent one hour with their sweet boy before his spirit left this earth. throughout the hour he was here, he blew bubbles from his mouth. one of those bubbles was the one in the picture that had caught my eye.

reading all of the plaques and stories of these small children and babies made me incredibly thankful for masey being here. it made me thankful for competent doctors who know what they are doing. mostly, though, it made me grateful for the countless families and kids who have gone before. those nameless people who we constantly hear about. we never hear names or even specifics. usually its not entirely clear we are hearing about people. but we hear about treatments that work better than others, side effects to look out for, and information about how masey's type of tumor behaves. all of that boils down to hundreds if not thousands of little boys, just like mason, just as beloved by their families, and just as precious, who have gone before. who have paved the way for mason today. i pray for those sweet kids and for their families, and am hugging my masey even tighter tonight.