Wednesday, May 30, 2012

Advocating an advocate

So, as I've been going through the process of trying to remember all of the stuff that was going on a year ago, there is something that really bothers me. This guy, Dr. Luiz Cesar - neurosurgeon at Hillcrest in Waco, actually told Stanton that he recommended not getting me any kind of treatment. He actually recommended not doing anything. He said since I was so young I would probably survive up to 2 years and that the treatments would probably not be worth it as far as the cost on my quality of life and the amount of time that I might gain. Of course I had no idea of this conversation until much, much later. But, it still irks me that someone that from what I can tell simply looked on Wikipedia to research the disease, had the nerve to say something so painful on a subject on which he clearly has no expertise. I have grieved several times for the pain that this one man caused my husband, family, and friends. I still hold a grudge toward this man. And if I ever see him again I'll probably kick him in the shins through a teary eyed face.

Fortunately for me, Team BASG is a group of fighters and immediately just blew him off. They started looking for alternatives. And through a crazy turn of events we ended up just where we needed to be, by the Grace of God.

But like I said this has been bothering me for the past few days and I need to get some things off my chest. If you find yourself in a medical situation and you don't care for the prognosis please go get a second opinion. Although I had a team of people making sure I got the best care, it has hit me just over the past couple of days that many people aren't so lucky. They would simply take what Dr. Cesar said and go with it. And if I was by myself, I probably would have done the same thing, especially in my drug induced stupor. So, just remember that if you find yourself in a medically precarious position, there's always something to try. So don't just take some guy's word for it, no matter what letters come after his name.

Secondly, only God knows when you will die. You could die in a car wreck today or you could live to be 120. There is no way for doctors or anyone else to know when your gonna go. So you might as well live your life. Praying for God's grace to sustain you through whatever trials you face. Don't let yourself get into a headspace of doubt and despair. Believe that the Creator of the universe will see you through. Have faith in His love you. And see the mercy He shows everyday by giving you another day to live for Him on this earth. He puts us through trials on this earth so that in our sin we will repent and draw close to Him. I have truly felt this to be a time of great blessing in my life. And as cheesy as it sounds, I hope one day you get the chance to live like you were dying. It really does change your perspective. You realize that the alternative to living is being with the almighty God and praising Him constantly. (If you don't have the security of knowing this, please contact me so that I can share with you what an amazing God we have.) and then you feel like the one who has the easy job. I mean essentially this disease has given me more time to spend with friends and family. I get to see my kids grow up. I get to know that there are people who love me more than they can express. I get lifted up in prayer constantly. I really feel like I get the better end of the deal.

Unfortunately, it's the people around me that suffer. They carry the burdens of worry and doubt. I see it on their faces sometimes, and I don't know what it would be like to be told that your spouse/ daughter/ sister/ best friend has a disease that there isn't a cure for. I am thankful for each of the people who have prayed for me. But, please also pray for Team BASG as a whole and individually. They are the most important people in my life. And sometimes they need the extra prayer boost even more than me.

Friday, May 25, 2012

Blessings

Today I am super thankful for the overwhelming outpouring of prayers over the past year. I reflected yesterday about what the last year has done for me, and I am a totally different person than I was. Stanton is totally different than he was. But the amazing part is that we are closer to God than ever before and we are closer to each other than ever before. It's been an amazing journey. And to see the grace that God has bestowed upon us has been nothing short of a miracle. I remember praying with him before my biopsy surgery, but I don't remember the "run to the body" part. I remember him always being positive when he was near. I remember crying with him and him holding me. He has been my rock through all of this. It's is simply awe inspiring to see how the Creator is working in his life every day.

As you well know, I am celebrating year 1 AD (after diagnosis), my previous life is affectionately referred to as BC (before cancer). Unfortunately, I was pretty doped up a year ago and don't remember much of the days or the exact order that things played out, but I do remember the people who were there. The powerful outpouring of love and support for and from those who are most important in my life. From family to friends, you all came and prayed over me. And just sat with me. Most specifically, I remember seeing MA in the hallway at Hillcrest hospital in Waco. I had no idea that she was coming. And as she approached my room, I was moved to tears. I don't remember what happened exactly in the next few seconds, but she did not make it into my room. I think there may have been a sign left on my door to say that I was resting. But as I watched her walk away I wasn't resting, I was bawling like a baby. I also remember having one of the most meaningful prayer times in my life at Zale Lipschy. Three of my best friends ever gathered around and prayed over me. Allison, Alycia, and MaryAnn poured out their hearts to the God of the universe in one of the most impactful moments of my life. I remember Meredith and the Besancon's visiting me too. I remember my Uncle Philip and Aunt Sandy bringing the whole family dinner. I remember church friends making the trek from Waco, just to say hi for a few minutes. I remember hearing reports of the collective of people caring for my kids. I remember having all of my siblings gathered around my bed. I remember my dad staying with me one night when Stanton went home to be with the kids. I remember the care and concern on my moms face. I will treasure these memories forever. But it pains me to know that they were all hurting so much just outside my door. Everyone put on a brave face for me, but it didn't really hit me until almost a month later that there was a lot of pain and despair. And while I appreciated everyone being strong for me, it absolutely grieves me to think of the pain that they must have felt.

But today, as I sit here in the various waiting rooms writing this blog. I am still absolutely amazed by the number of people who have been praying for me over this past year. People I don't even know have shared on caring bridge that they have been praying for me because we have a common friend. There are over 30,000 visits to my caring bridge site. I am so humbled by this. Simply humbled by the abundance of care and compassion put forth by family, friends, and complete strangers. And I thank God for this trial, because of the immense blessings and amazing memories it has brought me.


Wednesday, May 23, 2012

A year ago

A year ago, things were ok.
A year ago I wasn't worried about what pills I had to take and when I had to take them.
A year ago I was not thinking about my mortality.
A year ago, I was looking forward to going to the doctor to figure out what was going on.
A year ago, I thought I may have a disease caused by a tick.
A year ago I wasn't concerned that my kids might have to grow up without me.
A year ago I was a much different person.
A year ago I knew that Jesus loved me, but I had no idea how much.
A year ago, I had just spent a wonderful time celebrating my sons 1st birthday with the whole family.
A year ago I never could have never anticipated being who I am now.

Today, I am looking forward to letting go to a year ago. Tomorrow, marks the one year anniversary of my diagnosis. And for the past year I've been battling the thoughts of "a year ago, things were normal." But tomorrow, I won't be able to say "a year ago." I have experienced some of the most amazing moments of my life! And it's all because I was diagnosed with cancer.

I have experienced some of the most spiritual moments, feeling closer to God than ever before. I was even baptized.
I have had great times with friends and family, including 2 trips to Disney World.
I have seen the pain and grief on the faces of those who love me most. And though it hurts me to see them hurt, I have been truly touched by the outpouring of their love.
I have seen love poured out for my children.
I have seen the love that my husband has for me and will never doubt it again.
I have seen the value in living for God every day and being in communion with Him constantly.
I have felt the power of being lifted up in constant prayer and being held in God's hands.

With all of these blessings, I'm definitely looking forward to the next year. And when I do look back on "a year ago" from here on out, I will think about all of the blessings that I've received from this whole experience.

Here's a couple of pics of the amazing blessings that I am so thankful for today.



Monday, May 21, 2012

Two for Two

Jacob is two!! It's taken me a while to get this up, seeing as how he turned 2 on May 2nd, but better late than never right?! We'll start with a couple of pics from his celebrations.


Good morning Mommy kisses! I love this little man!



Pancake breakfast at IHOP.

A little playtime at Baylor when we picked Daddy up. They were a little excited about the fountain.

After having hot dogs, carrots, and oranges for dinner it was time for a celebratory cupcake.

On Saturday May 5th we celebrated again with the whole family at Baum Stadium.

Oh, how I love this boy!

Our attempt at a family photo.




One tired little boy after lots of playing, eating, prizes, and 7.5 rather warm innings of baseball.
 Jacob is just like any typical 2 year old boy, loves messes, dirt, outside, playing/ fighting with his big sister, spitting, cars, trucks, etc. But he has taken a special liking to mowers and cycles of any kind. For the past few months he's been crazy for anything that sounds like a lawn mower or looks like a bicycle. Fortunately, we already had the cycle covered, because he got a tricycle for Christmas. He has been riding it pretty much every day since about mid- February. He rides it inside around the island in the kitchen and outside on the patio. So naturally we got him a bubble mower for his birthday. He has mowed our backyard nearly everyday since. I'm seriously considering trying to find something that actually works to cut the grass for the boy to use. (Speaking of "the boy", that has become my term of endearment for Jacob. He is just such a boy, so different from Chaselyn. He just likes boy things. For example, this morning he woke up and asked to watch Cars and he is currently playing with the shake and go cars he got for his birthday. It may not come across as a term of endearment, but I've always thought that boys are weird. Jacob is showing me just how wonderful the other gender is.) We also got him a bubble blower (as in leaf blower.) Both things were a hit. He also got lots of other prizes too from the family and some extended family. Lots of fun toys including a scooter, a Cars 4-wheeler, a pool, little people, play-doh, movies, balls, other fun toys and too much for me to remember. We feel truly blessed to have such wonderful family that loves our little guy as much as we do! And we were so glad to be able to spend Saturday at one of our favorite places and see some people we haven't seen in a while.

Jacob is a skinny boy. He weighs about 25 lbs. and is about 35 inches tall. He still wears size 12 month shorts, sometimes he can keep on 18 month shorts, but they are usually too big still. Mostly 18 month shirts too. He still eats a ton. I guess he's just very active. Actually I know he's very active. (tiringly so ;-)) Like I've said, he is always on the move. Bouncing off things, riding things, running around in circles, mowing, etc. He's a man on the move. His vocabulary has exploded just over the past couple of weeks. He's in the repeating stage. He'll mimic or at least try to mimic anything you say. Chaselyn especially likes this new feature in her little brother. It is hilarious to hear her try to break words down for him. I think on the way to church yesterday she broke her name down into about 6 different sounds for him to mimic. One of Jacob's newest tricks is to grab your hand and say "mere", as in come here, or "mon" as in come on. This was very effective while visiting with the grandparents. He'll also pat the seat when he wants you to sit somewhere. He likes to ask about everybody we've seen in the past couple of weeks. He goes through the list periodically throughout the day - Daddy?, Papa?, Granny?, Ducky?, CrawDad?, Matthew?, Sean?, etc. He seems to ask about more boys than girls, go figure. He also likes to be watched as he falls asleep. This is extremely strange to me. But, he just likes for someone to be there. He is in the big boy bed now and can climb out with little problem. So if you leave before he is asleep, he will come find you (any suggestions are welcome to help with this situation).

So that's our little boy! Amazing isn't he?! One of my favorite features is on my sweet boy is his belly button. Sometimes he's an inny and sometimes he's an outy. I just love to look at his bare belly and navel gaze as he runs around and plays. It's so stinking cute! He also still has the most amazing eye-lashes. He's a very handsome boy all around. His eyes are not blue any more really. Some days they still have a blue hue, but they are never the same color from one day to the next. He's a chameleon.

Jacob, my dear sweet son,

You are an amazing little boy and I can't imagine life without you. You have brought such joy and blessing to my life and so many others' lives as well. I love your adventurous spirit, your unshakeable determination, your wonderful smile, but most of all I love the whole package of who you are. We are already seeing that God has big plans for you, but we knew this before you were born. In fact, God told me before anyone else even knew about you. I remember the exact moment that God told me you were going to join our family. God spoke to me and said "His name is Jacob." while I was washing dishes. Sure enough, later that evening a test confirmed that you were on the way. As I think about that special moment between you, me and God, it makes me realize that I am just a steward set in place to watch over you and try to do the best I can to help you learn to love God. But ultimately, you are God's child. He knows you much better than I ever will, but I thank him every day for blessing me with you and your amazing gifts. I pray that I will be sufficient and capable of sharing with you the amazing grace that God can provide for you. You are mommy's special boy. And though sometimes I may do things that you don't like and discipline you when you are misbehaving, I hope you can always see the love of God through all of our experiences together, good and bad, happy and sad. I love you! And you amaze me constantly and teach me new things all the time. But most of all, you have proven that there is no limit to how much love one can have in their heart.

Love,
Mommy

Tuesday, May 15, 2012

Goober



My sister is 21. She is smart, beautiful inside and out, an amazing aunt, an awesome person,  and I miss getting to see her. She was my baby doll when she was born. Then she was kind of a burden through my high school years. But now she is simply a delight. She does so much for others. She is an RA, she's actively involved in two different service fraternities, she does volunteer work out the wazoo, she's just good people. And I just wanted to take a page on the internets to dedicate to her and her awesomeness. Really, it's the least I could do.

I love you Goober! I hope you had a fantastic 21st birthday!


This is Chaselyn proudly displaying the cup she won with Aunt Rachel for doing the best air guitar at the baseball game. She won the cup and a free haircut for every person on the row from SportsClips. Aunt Rachel is pretty awesome!

Saturday, May 12, 2012

To my Momma...


Mom,

Just wanted to write a little note to thank you especially for all that you have done this past year. I really cannot begin to express how much I have appreciated your willingness to just be there for me and the kids at the drop of a hat. But more than that, you have done it all while not only dealing with your daughter having brain cancer, but also dealing with your own cancer treatments. I cannot imagine what it was like to get the call last May. Just to hear that your daughter has cancer. But in some strange way, I think you were prepared. You were kicking cancers' butt and now you could help me to do the same. It's been extra special to commiserate with my own mom about the not so lovely details of treatments.  You are truly an amazing mom, and I wish I could be there in person to tell you this, but we both know that I wouldn't be able to get the words out.

I have said it before and I will say it again, you really can't begin to appreciate the love that your parents have for you until you have your own kids. Thank you for loving me when I was misbehaving. Thank you for encouraging me to stand on my own. Thank you for letting me fall down but being there to help me up if I needed. Thank you for your patience. Thank you for the unconditional love you have shown. Thank you for being you.

Happy Mother's Day Mommy! I love you and miss you so much!