About My Parents
How My Family Describes Me
Major Events in My Condition
Hi, My name is Bethany Elaine Slaven and I am 3yrs old and I want to tell you my story.
When I was about 8mo’s old they discovered I was born with Hydrocephalus, they say that’s water on the brain. So I had to have surgery to put a VP shunt in my head that has a tube that drains into my tummy. I guess I’ll have that all my life. Then before I was 2 they discovered I have Neurofibromatosis 1 (NF1) which causes tumors on my nerve endings. By the way I can say all these big words just so you know how smart I am because I am very smart. Well soon after I turned 2, I started having lots of headaches so my mommy and daddy took me to the hospital and the Dr’s took lots of pictures of my head and they found out that I have a brain tumor on my optic nerves and that my shunt wasn’t working quite right. So I had to have another surgery on my head for my shunt and then 1 week later they had to do another surgery called a craniotomy to test my tumor. The good news is that it came back benign, the bad news is that they couldn’t do surgery to remove it or I would be a vegetable and I don’t much like vegetables so they had to do chemotherapy. Next they had to put a medi-port under my skin on my chest to access the chemo. I did chemo once a week for almost 1 year. Dr. Smith and all the nurses at CHOA were so very good to me.
They decided that the chemo wasn’t stopping the tumor and by now I don’t see very well but my other senses are kicking in and I get around pretty good. So then they want to start radiation. My Mom and Memere (that’s French for grandma) have to take me every morning to the hospital and they put a mask over my face to put me to sleep so they can do my radiation. This goes for about 51/2 weeks. I got to know all the nurses and Dr’s really well at PSL and they all think I’m adorable and I think they might be right. Well they took another MRI and found that the tumor is still there and the same size but they tell me it’s stabilized and that they are very happy with that. We were all hoping it would be gone but if they’re happy we’re happy.
One very cool thing is the make-a-wish foundation sent me with my Mommy and Daddy to Disney World in April! YEAH! Also I just met some very nice firemen they want to help my mommy and daddy with some bills. I have lots and lots of money in my purse so I can help too!
Well that’s my story, and I have lots of people praying for me and taking good care of me. I like to meet new people and my Grammy says I have a very kind spirit. I like to help my Pepere (that’s French for grandpa) at his shop a lot. My Papa (that’s American for grandpa) and I have an imaginary friend named Alfred that we like to play with. I think he’s my guardian angel. So as you can see I’m a very happy 3yr old with some extraordinary circumstances.
Thanks for listening to my story and it was very nice meeting you.
I wanted to just sit down this morning and introduce you to Bethany's mom and dad. I got to thinking that many of you don't know them. Scott is 24 and Renee is 22, so you can see they are very young. They were married the April after Bethany was born. Scott works very hard for a lumber company, he runs the yard. He is a man of few words and strong opinions. In fact you won't see him on the 9 news video, he has mixed feelings about them doing a story on Bethany but he agreed to it in hopes that it will help Bethany. I watched this carefree musician turn into a man the day Bethany was born. He owned up to his responsibilities immediately. I watched him transform into a bigger man as Bethany started having health problems at 7 months old. I've watched my son crumble and cry by my granddaughters bedside and there wasn't a thing I could do to ease his pain. He has strength that I can't measure up to. Renee stays at home to take care of Bethany. She also has strength that I can't measure up to. She believed when the rest of us said our good-byes to Bethany a few weeks ago. Like Scott, she takes things on as they come and doesn't worry about the what-if's. I've watched this carefree girl stand up to trials that a young girl her age should never have to do. I've often said, if I'm a type A personality she's a type Z, we are so different. I've learned some things from her about being a little more kicked back. I've also watched her crumble at Bethany's bedside and then pull herself back up again. Renee has been having to endure all of this while caring our grandson who is due in December. What a load she has been carrying while spending all day every day at the hospital. You'll know who she is if you go to the hospital, she's the one curled up in a corner somewhere trying to get some rest. Well I hope this sheds some light on who Bethany's parents are. By the way they applied for government assistance and were turned down. They have re-applied again. Isn't it nice to know that while so many are taking advantage of the system the ones who need it are turned down? Something's wrong with our system. That's why everything you all are doing for them is so appreciated. It is so nice to know that there are still so many good people out there who care.
She has a great sense of humor!
She loves to change names, like she'll call me Grandmother or call her Daddy - Scotty Wotty. Once I told her "Bethany, you are something else" and she replied, "What am I?"
She still loves to feel faces even though she can hardly move and She'll honk your nose.
Bethany is a very loving 3 year old that loves to meet new people. She touches hearts everywhere she goes. She loves her imagination time with her Papa. She enjoys talking or sound making toys. She has many "friends" at Grammy and Papa's and they all have a name and Papa makes all the voices for them. i.e. stuffed animals, baby dolls etc. She likes to go to the park and feed the ducks. One nibbled on her finger and she thought that was so funny and never forgot it. She loves to go shopping at the mall and always makes new friends as well as stops to say hi to already made friends. Of course she loves to dress-up and wear jewelery and hats and put on make-up. She loves music and her favorite song to dance to is the Snow White song. She enjoys picnics in the back yard.
I've been in the hospital since July 29th. When I arrived, I was having constant seizures. That evening I had a shunt revision. The following week I had 3 major strokes. My family thought they lost me then. The following Monday they did an angioplasty to enlarge my renal artery. Then by Friday they had to place a trache to help my breathing. The next week they placed a feeding tube. Monday August 30th they did encepheloduroarteriosynangiosis (a vein by-pass) to get more blood to the brain. So I have had 5 surgeries in 5 weeks. I am blind from the brain tumors from Neurofibromatosis and my vocal chords are paralized from the strokes. I have endured one year of chemo and 5 1/2 weeks of radiation. The radiation is probably the cause of the seizures and strokes because it hardened my arteries to my brain.
Over a year has gone by now. They tried some therapy, and I've had a few more surgeries. I'm not doing well, not at all. I lay in bed day in and day out. I have a new little brother named Gideon! Sometimes I feel him when they lay him by me. He's very wiggly. He was born right before I turned 4 last December. I don't feel very good, I shake a lot and then my Mommy or someone gives me some medicine so I'll go to sleep. Memere comes by everyday to check on me. Sometimes she and Mommy take me out for a little while. Michel comes by everyday to clean my trache, she talks so nice and is so gentle. I love it when Papa comes by and sings and reads me stories. Sometimes he dances with me too! When Grammy comes over, she kisses, kisses, kisses on me. I can't even reach up to wipe the slobber off. When Pepere kisses me, it tickles because of his hairy face. I know everyone loves me very much, I know they'll be sad to see me go be with Jesus, but I also know they'll be O.K., they told me so. I'll miss everyone so much! But we'll be together again! I'll run up to each one of them as they arrive and kiss them and tell them I can see! I'll show them all around the wonderful kingdom! I'll say "Lets have a tea party!" It will be O.K. one day, I promise!