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.