Sunday, March 9, 2014

days remembered: march 9, 2005

the memories are foggy. the presence of the Lord was clear.

it was march 9th, 2005. it was the day i was to have brain surgery. to remove a brain tumor. i was 13. i was still in shock. sometimes it still blows my mind that it actually happened. 

flashback:the night before many had come to pray. ana tells me she came. i wish i remembered that. family and friends came. i have a vague memory of us sitting in the living room holding hands and praying. but i'm not sure if it actually happened that way. that might have been days before. i wish i remembered. but i think part of the journey would be too scary to remember. i think God has me not remember some things on purpose. 

i remember the beginning of the morning vividly: it was a snowy morning. i woke up. went into seth's old room. kissed sissy goodbye. and off we went. mom. dad. grandma barb. and me. we all knew the future was unclear. but we also all knew WHO held it. i remember wanting to throw up. i clung to mom. jordyn was coming to the hospital later on in the day. grandma said to me "Shelby if you remember me when you wake up i'll give you 100 dollars." i was like "game. on. grandma."

we walked into the hospital. took the elevator to the surgery floor. the doors opened and there was pastor joe. waiting to pray. you guys it was like before 6am. best.thing.ever. dad's like "he beat us here!" we checked in. hospital pj's on. i remember being so frustrated because they gave me gigantic ones. then hospital bracelets on. i went back and got prepped with child life. IV was in. and then we sat. and then walked over a guy named pastor tyler. i had met him a few weeks back when i started going to a different youth group. he prayed with us. pastor joe prayed with us. and then they took me back. i am unsure of my memories. but i do know it was a very white room. lots of machines. they had to lift me onto the table. and i fell asleep holding my child life lady betsy's hand. i remember she asked me what my favorite place in the world was. i obviously replied "sunset beach." and she told me "think of being there." and thats the last thing i remember...

{mom says i remember it wrong...and that she was back there and then they wheeled me to a different room...i'm convinced she is wrong...we may never know haha}  :)

the surgery started. dr. aldana had given us an estimate of 8-10 hours...

meanwhile out in the waiting room. people started coming to pray with mom and dad. everyone wrote in a book that came that day. i will forever treasure it. i try to read through it once a year. it never ceases to bring me to tears. people brought food. i heard later that the waiting room was full of our friends and family coming to pray for me. the book says that stories were told & everyone began to go pray with and for the other families waiting as well. God was present in that waiting room just as He was in the operating room. i wish i could have seen it. i wish someone would have filmed it. like it was a documentary. a few of dad's friends wrote in the book that i was missing my own party. i would have much rather been at the party. mrs dalton and mrs lewison wrote in the book that they should have brought more food. and so many more people wrote amazing things. so many people came. pastors. friends. family. i am thankful for them.

5 hours had passed & they came out with the news "we are just entering her brain." 8 hours "she is very vascular." 10 hours "it's a little more difficult than we had thought." [YOU GUYS IT WAS SUPPOSED TO BE OVER BY NOW!]  15 hours "we can see the tumor. but she is so vascular. still need more time." 20 hours "we finally got to the tumor." [i'm like at least i got to sleep through this! poor mom and dad just were up this whole time.]

mr. spodnik, mr. woods, jordyn, mom and dad sat up all night together. seth was sick and wasn't able to come. a few others were in and out. but they were up all night in that waiting room. praying. waiting. and it was still going. tears fill my eyes when i type it. because it just makes me feel so loved and makes me remember how amazing people are! grandma went home to sleep at some point. mom and dad told spodnik and woods they could leave...but they wouldn't. if that isn't the definition of friends being family, i'm not sure what is.

and over 21 hours after i waved goodbye to mom and dad a small filipino man named Dr. Aldana walked out of the operating room to give them the good news. the surgery was over. they couldnt get the whole tumor but they got enough. he explained that i had the most blood vessels he had ever seen in a brain. [ dad tells me it's cause i'm so smart. i say with all those vessels how come i can't do math!? ] the guy is my hero. he drank 4 gatorades. ate 2 sandwiches. went to the bathroom a few times and took one small break. he said i was doing well and they could see me shortly. Jordyn cried and asked to hug him of course. he had just saved my life. but i do believe his hands were guided by God that day. Angels were present. i just know it. i often wish i could remember more. but i think that i don't remember for a reason. the good news is, Jesus remembers it all. and one day when i'm up there hanging out with him, i'll have Him tell me the stories.

the nurses say that they had to rub my arms and legs to prevent blood clots. from being in a clamp for about 24 hours i was left with a few bald spots and then a cut on my head from it. and if you were wondering...the hair never grew back. it's always funny when i get my hair cut because my lady is like "found a bald spot...theres another...and the third!!!" hahah. #brainsurgeryproblems also...did i mention that they only had to shave the top of my head? reverse mohawk at its finest! at the time my precious hair was one of my big worries. now looking back i should have just shaved it all off. then it was just too traumatic. thus:: reverse mohawk.

mom and dad got to see me in recovery. i was being moved to the pediatric intensive care unit. they told mom and dad to go home because i was gunna be on the ventilator for hours and i wouldnt know they were there. they got home. and the phone rang. i was fighting back. i was coming off the vent. God was already showing those doctors WHO was in charge! just like when i was born. 

when they came back to the hospital they came to my bedside and said "mom and daddy are here." and they said the first thing i said  was "where is grandma?" i wanted my money! hahaha. that is when they knew i was gunna be okay. Jordyn tells me i slept most of the day and would stick out my tongue when i wanted the water sponge. when i woke up on friday i thought it was thursday. because according to my brain, my surgery had only been 8-10 hours. when really it was a whole day. and then i was just confused. i guess. like i said. i barely remember anything. most of what i've written is just what people have told me.  i do remember reaching up to touch my head every once in a while and mom would just move my hand away. i just wanted to see how much hair was gone i think. { YOU GUYS SOMETHING CRAZY HAPPENED! when they took off the bandage i had sprouted hair! within like 2 days. }

things i do remember from icu:: chrisi and pastor rick visiting. how could i forget that?! i remember jordyn being there. and then mrs spodnik visiting. kenzie came too but she wasn't allowed in the room.

i was in the PICU for a few days and then got moved to hemotology/oncology. the tumor had been shipped off to johns hopkins for biopsy and research. the "tumor-board" at the hospital was determining my next phase. to do radiation or to not do radiation. i am greatful i didn't have to recieve it then. i still find peace in knowing if something every happens radiation is an option. but i don't plan on it happening. i hope mr tumor doesn't either.  i was doing well they said. lots of visitors. lots of therapy. crafts. amazing nurses. a loving mama. a daddy who let me love mama more then, he knew not to take it personally. { YOU GUYS GUESS WHAT ELSE:: so mom slept there almost every night. then the one night dad slept there i literally had this amish old fashioned nurse that was like 75 i swear. it was a nightmare. needless to say i bawled. THAT I REMEMBER. she had on like a hat that made her look like she was straight out of sister act. and in my teenage embarassment had to let my dad help me go to the bathroom instead of her because anything was better than her. } anyways,  my friends came often. neighbors came. old teachers. family. so many people. it was great. even an ex boyfriend or girlfriend of jordyn and seth hahah ... i always knew they liked me more ;) 

ana came a few times mom said but i don't remember. i wish i did. i think elly came the most out of my friends. she was so brave. remember. my head was wrapped up, then i had bandanas, but i looked sick && lots of hair was gone. i would have been afraid of me. hahahah. but elly was so brave. i love her for that. i remember us talking about boys we had crushes on and giggling. she brought me 7th heaven on dvd and so much candy. she told me about school and everything happening there. needless to say, i had one amazing supportive and strong best friend. she's always been that way. while most others have she's never wavered. i am so thankful for that. love you elly ria. BFF4LYFE 

ridiculous fact: the day before my grandma left to go back to memphis, we were hanging out in the hospital room and i wanted to watch a movie. she went to pick out a few and she brought back:: patch adams & step mom. { i'm like GRANDMA IM NOT DYING!! and if i was like in a million years WHY would you pick them!? only barbara }

it was wednesday. a week from surgery. things were good. they were talking about sending me home the next day. they took the drain out of my brain. that i totally remember. { when he started the tv was off and i could see the reflection and that about did me in. } that was not fun. it hurt a lot and then the stitches hurt worse. i took a nap. dad brought me arbys! i was sick of hospital food. erin and alex came for a quick visit that afternoon... and i got really sick. 

a setback:: i got chemical meningitis. that was not fun. i was really really sick. i vividly remember just puking and crying. tests were run. and then the news. i was not going home anytime soon. that was sad. i bounced back pretty quick. { needless to say i couldn't eat arbys for a long time }

i went home a few days later. on a sunday. seth met us at home. he had not been allowed at the hospital because he was sick. we had "pasta stir fry" for dinner that night. no one except my family will know what that is. but trust me. its like heaven covered in salsa. the next month and a half was filled with visitors. i didnt go hardly anywhere. i slept in mom and dads bed with mom and dad was de-throned to the guest room. i got breakfast in bed everyday. then i would go down to my "kingdom" in the living room for the rest of the day. it was decked out with stuffed animals and balloons everywhere. i was a princess. haha. there were hundreds of cards and emails sent. everyone was praying. we could feel it. 

i remember the first day mom gave me a bath. we had been home for a few days and i must have begun to smell. in the hospital all i had gotten was "sponge baths" but really they were the warmest towels in the world that smelled so lovely. anyways. mom was allowed to wash my hair that day. but we had to be careful because of my scar. she washed piece by piece and it took needless to say i ended up in a bath of hair and blood and it was the definition of terrible. i guess they forgot to mention that to her. i'm sorry that was so vivid. i just. it wasn't all fun and games. that was reality. { YOU GUYS. the most ridiculous part was i was losing so much hair and mom like thought i had cancer or some weird side effect from the surgery so the whole time she was trying not to panic because all my hair was coming out. i think seth said something like "she's not on chemo" and moms like "oh yeah okay this just is normal maybe." Only Lorrie... } thank you for that mama. i would have not been good at that. 

i remember one day mom let me and seth go to swensons. she made us call in the order because she didnt want me to be gone long. i remember i put on these red sweatpants that had something written on the butt with cartoon animals, a black zip up & a black newsie hat with a red bow on it. all from the limited too of course. for some reason i remember the most random things. but that is how special that car ride was to me. i loved having him around. that hasn't changed.

i got to go to grandma's for easter. that was 3 hours away. that was a big step. i got a really big easter basket that year. i still have the converse hightops i got that year. they still fit. heres to stopping growth hormone the day i was diagnosed with a brain tumor and my feet never growing hahah. { how many people get to say that sentence!? HAHAH } 

the healing process was hard. but going back to school was harder. it was exhausting and a big adjustment and i was really self concious from all the weight gain and hair loss. i mean i felt like a 60 year old man must feel when he's having body issues haha...but really...we started things slowly, i would go in the morning, then an afternoon, then a morning. most people were so loving. there were a few kids that didn't understand so that was hard. my teachers had been working with mom and dad the whole time to keep me on track. s/o to mr jones for letting me get A's on my history tests hahah :) it was overwhelming having to tell the story so many times. 

days passed. i continued to heal. that summer was very restful. and of course we went to sunset beach. appointments became fewer and the times farther between. scans became months apart. and then to a year apart. my tumor remained stable. my surgen moved to florida and my follow up guy passed away a few years ago of cancer. now, i see an amazing lady at the cleveland clinic. she is so smart. and i continue to have scans that are 6 months apart. i am thankful for this. it keeps me saine. i read the last MRI report. and inbetween all the big words i saw "stable and no other evidence of disease." that is all i care about.

thank you to everyone who has prayed for our family the past 9 years. it has been quite the journey. so many of you are prayer warriors. and in my eyes. you are the real heroes. you have walked by my side through the unimaginable. for everyone who has stuck by us, we are so thankful.

i am continually blown away that the Lord has written such a story for me. the battle hasn't been easy, but beauty has always come from it. i trust that His plans are perfect and that i will be able to use my story for His glory. i am forever greatful to be living this life. more than most people would ever imagine. because, you guys. i am just 5 feet of spunk trying to change the world.

BLESSED by a heavenly Daddy

Shelby Elyse

Monday, March 3, 2014

days remembered: march 3, 2005

i was 13 the day my life changed.

it was snowing that day. i went to school with no idea of what was to come. i was excited to get the afternoon off and go to dinner with mom and dad after my scheduled cat scan. but then. it all became so different. so fast.

flashback:: i had headaches on and off in january and february. one here or there. nothing major. sissy got married one blustery winters day in january. i was excited for the spring and what was to come. having occasional headaches was normal for me. so nothing seemed out of the ordinary. on February 27th i woke up with a really bad headache. it was pin-pointed to one spot in the back of my head. i just kept telling mom "if you just push on it it feels better." it was not a migraine. it was just a headache. well day 5 came and the awful headache was not gone. i showed no other truly alarming symptoms. but mom being the superwoman she is just had a feeling. a feeling from God i believe. so off we went on march 2 to the pediatrician. he did my exam. looked in my eyes. and i think this is the point he knew something was wrong. but he did so well. he did not say anything was wrong. he took my blood pressure. it was sky high. mom sat with her legs crossed.  he simply said "you know you might just have a new food allergy but i want to do a cat scan TOMORROW to make sure." i am still thankful for the way he handled the situation. dr johnson will always be one of my favorite people on this earth. he is one of the reasons i'm still alive. so off we went. i got home told dad "daddy i get to get a cat scan and miss the end of the day tomorrow!" he told us he would join us. ( ANOTHER GOD usually skipped out on little visits like cat scans. he always made me more nervous. but this time. it was totally  great he was there. because what was coming was unimaginable. ) i was excited for an afternoon with mom and dad. the months prior had been so busy with wedding buzz that in my mind i was just excited for the attention. who would have thought. me..attention? nahhh. hahaha. so anyways. the night went on. everything was normal. i went to bed. life was good.

morning came. it was march 3, 2005. i probably ate some unhealthy toaster strudel. (which i recently learned is one of the worst things you can eat.)  i was obsessed with those. i got dressed. picked out a super cute outfit to wear to my special appointment. [because if you know me. i dont go to my doctors appts dressed poorly. if your gunna have something wrong with you you misewell look cute when you find out or when your getting help.] anyways. off to school i went. morning schedule as normal. ate lunch with my friends. went to math class. and then walked down to dad's office. changed my clothes. and i sat on a bench in the lobby and waited for mom.

when i was sitting on the bench  a kid named johnny came and sat beside me. i think he was leaving too. he asked me where i was going. i said children's to get a cat scan cause of a headache i was having. he looked me in the eye and said "wow you are brave, im sure everything is gunna be just fine. ill be praying for you." i remember this like it was yesterday he seemed so honest. and i had never categorized getting a cat scan with being brave. but. turns out he was right. he probably has no idea how much him saying that helped me. i've never told him. maybe i should. he probably doesn't even remember me. anyways. mom pulled up. i waved bye to johnny and off we went. dad, mom and i. the three amigos.

we pulled into the hospital. walked across the bridge to the main hospital. took the elevator down to radiology. checked in. i got my hospital bracelet. it was red. like always. symbolizing allergies. my child life lady betsy came out. asked if we had questions. walked me back. mom came too. dad stayed in the big waiting room. i layed in the machine. mom stood close with one of those big smocks on. and it started. it only took a few minutes. and then. the storm started. the big wig radiology guy walked in. i recognized him from other tests. he said we needed to go have a seat in the waiting room. 

this. doesnt. happen. like. ever. they usually say "we'll call your doctor with the results and he'll get a hold of you. you can go!" yep. didnt happen. we sat in the waiting room. it was a few minutes and the phone rang besides us. the receptionist told us the phone was for my mom. it was dr. johnson. my pediatrician. mom instantly started getting hives. she does this when she gets nervous. dad sat trying to listen. and here came betsy. my child life lady.

dr. johnson on the phone:: "lorrie the cat scan is not clear enough. her brain has way too much fluid on it. they need to do an MRI to see what the issue is. to get better imaging."

mom:: "can you explain this to roger please, im not understanding." (she meant she was in full blown panic.) 

dad gets on the phone. dr. j tells him the whole thing. and betsy sits beside me. explains im going to get an MRI and i need an IV so they can give me contrast. they took me back. this time both parents came. i was thankful the ladies giving me the IV were old friends. not in real life. just in hospital life. but i liked that i recognized them. i told dad to look away so he wouldnt faint while i got my IV. i held moms hand tight. then dad waited in the tiny waiting room. while mom went in the MRI with me. i think she thought that over the sounds and because of my earplugs i couldnt hear her. but tiny sobs and little sniffles filled the 40 minutes. i was almost asleep when they came to get me. yep. i fall asleep in those things. i stood up. they took out my IV. i put on my shoes and when we walked out of the MRI room.

and there they were. a whole gang of them. the whole radiology team must have wanted to see. betsy got me. her and one other lady walked out of the room with us. we got on an orange elevator. it took us to the 6th floor. when the doors opened. it clearly read. "NEUROSURGERY."

game. changer.

a really cute nurse named renee was there to greet us. they took us back. there was a giant monsters inc fuzzy statue of sully and mike and boo. they weighed me. got vitals. by this point mom was still crying. i was really confused. and dad had gone into his mode of bouncing his knee and whistling because he is nervous. 

the doctor walked in. shook our hands.and in his little accent introduced himself. "im philip aldana. a neurosurgen here at the hospital." he sat down. glistening tears filled his eyes. and the words he spoke. well it's an understatement to say that they changed my life.

dr. aldana:: "there is something there. we think either a cyst or a tumor but it is causing fluid build up and it needs to come out."


dr. aldana " shelby has a brain tumor." "it's by her thalmus on the third ventricle."

he explained everything. my headaches were because i was hydrocephalic.meaning i had water on mmy brain. this fluid was causing pressure. he asked if there was any other symptoms. because if i had any i was going to be admitted. i'm glad i didn't. he explained that surgery would be the next week. mom was crying. dad was crying. i was crying. it was a bad dream come to life. i took it upon my 13 year old self to take what johnny said into account. in that moment i thought "i am brave." so i began to ask the hard questions.

"am i going to die? am i going to be the same? am i going to remember everyone?"

he answered "we are going to try our best, your tumor is in a complicated spot, but i will have my best team to make sure you are okay. again. i am going to try my best. there is a change some of your senses could be damaged because of the location. and again. i am going to try my best i really hope you remember everything. i really do."

mom and dad asked a few questions. they started me on meds right away so i wouldnt have a seizure. we were getting ready to leave the room. he shook our hands again. and softly said...

"if you would have waited another week or so to bring her, she would have had a grand-mal-seizure and probably would have died." CRAZY RIGHT!?

plans were made for more scans. a follow up appointment and instructions to bring me to the ER if any other symptoms began. he would call us with the surgery date for early the next week. and we walked out of the hospital. so much different than how we had walked in.

we got to the car. i stayed silent. tears running down my face. i was only 13. i was so confused. there were no more plans of dinner. just plans to get me home and let me sleep. the phone calls began. lots and lots of phone calls. calling family and friends. jordyn and seth just cried. the aunts cried. everyone cried. mom called the dalton's to let them know. diane says she just fell to the floor. we told my best friend elly. i remember calling ana. she didn't say much. i sobbed. i was so sad. and really scared. i got home. got pj's on. and crawled into bed. the sun was still up. i drifted in and out of sleep. and then...a knock at the door.

pastor joe & karen. coming to pray. i love them so. i will always be thankful for them for this very reason. it was simple. he made sure i believed in Jesus and He was in my heart. he wanted to make sure there wasn't a doubt in my mind. they stayed for a long time. talking with mom and dad. i got sleepy and went back to bed. they hugged me goodbye. and a while later i heard them leave.

mom and dad came up and tucked me in. and off to sleep i went. to the sound of ringing phones and lots of tears...

and thats how the journey began. the battle had started. but beauty was coming.

Blessed by a Heavenly Daddy,

Shelby Elyse