Wednesday, September 30, 2015

What it's really like

 
As childhood cancer awareness month comes to a close, I wanted to take a minute and share a little bit about what our life with cancer is really like.....
 
Nearly three years ago our world was turned upside down with the single statement "Your child has an inoperable brain tumor and there is a 40% chance he will live five years from today". I can not put into words what I felt in that moment aside from saying that I felt fear, anger, and disbelief in a way I never thought was possible. That simple statement by our oncologist changed our lives in more ways than I could have ever dreamed. I have heard "I don't know how you do it" more times in the last three years than I can count and I always answer the same way: "What is the other choice". I decided long ago that I would not let this experience define us. I will not allow Brayden's diagnosis to affect his life in a negative way. We get up each day, no matter whether it's a clinic day, MRI day, or just a fun day, with the same outlook. It is a blessing to be living this life with Brayden and he is happy so I choose to follow in his footsteps. Sure, some days it is extremely difficult to put one foot in front of the other and smile your way through the bad things but it is what it is. I can not put into words how difficult it is to listen to your 3 year old scream and cry through a clinic door while some  poor nurse has to push a tube down his throat, but while it's happening all you can do is take a breath and know that when its over you can cuddle Brayden and then take him to do something fun. That all being said, we go through the routines of our daily life mostly with genuine smiles, but sometimes it is with forced enthusiasm. While I wish cancer wasn't a member of our family it is, and we can't return it, ignore it or forget about it.
 
 
We have done our very best to fill Brayden's life with love and fun experiences. Sometimes I know we let him do things we probably shouldn't but his smiles are contagious. Brayden loves riding with his Paw Paw on his motorcycle even though he never goes beyond the streets of the neighborhood. Brayden loved the beach, he loves swimming, and he loves to go on carnival rides. 
We have been to a fall city fair every weekend since labor day for the rides. Most of our time is spent putting as much fun as possible in his little life. 
 
 
My dad (pawpaw) is Brayden’s hero, and my parents are affected by this journey as well. They are always there for us and help us find the balance for Brayden. They watch Brayden while I work and Brayden calls there house home too. Brayden has learned on Fridays he gets to go ride the school bus with my mom (mawmaw) and then he gets to spend the weekend with my parents while I work. I am so grateful to have them in our lives because they help so much and put my mind at ease about leaving Brayden.
 
No matter how I choose to be happy and enjoy Brayden, sometimes the fear and anxiety take over. I worry about how all these things will affect our family. Brayden is developing anxiety about going to the clinic, and it's hard to watch him cry as we get off on the highway exit to get to the hospital. I worry about how all of this will affect our sweet baby girl. She has been left at home with someone else multiple times so I can go to clinic with Brayden, or take him to the waterpark, and tomorrow she will likely get left with someone else so I can go on a fieldtrip with Brayden's class. That being said, she has also already spent many Tuesday afternoons at clinic being held by the nurses during Brayden's port access. I know she is too little to understand but I worry about how these things will affect her a she gets older. Will she think we love her less because Brayden requires so much attention?
 
 
These days Brayden is doing great. If you look at him he seems like any other kid his age. He’s happy, he loves school, his people (my sister and her family), snuggling while watching monster trucks, and he loves to eat!
 
On July 7th 2015, we learned that the 4th chemo regimen was not working as the MRI showed tumor growth so we stopped that treatment. Sadly this was also that day our sweet babygirl was born and I had that conversation with our oncologist via facetime while I was in pre-op. Brayden loves having a sister, but he is so disappointed that she is not able to walk or play trains yet.  The other dislike he has is when his paw paw is holding her, and Brayden tells my dad "that his mommy can hold her", or just goes off by himself. This weekend is my first weekend back to work since she was born and I am interested to see how he does sharing his pawpaw.
 
After a lot of weighing options, we started Brayden's fifth treatment on August 3rd. The treatment is oral and he refuses to take it so it's given via a tube pushed into his nose down his throat and into his stomach. At this time, this is the last chemo regiment that is available for Brayden. Our next MRI is on October 19th and it will de a defining moment regarding Brayden's future. If there is tumor growth the chemo will be stopped and at this point I don't even know what the next steps would be if that is the case. I am hoping for good results because he is tolerating this chemo so well and aside from having the tube placed it's easy. We just got the word that he doesn't have to get labs every week anymore so that will be nice!
One thing is for sure: Cancer changes who you are, how you think, and what is important in life.  You never know when things will be uprooted and changed. That being said, Brayden's diagnosis is not all bad. It has affected our family in amazing ways too. It has changed me in ways I never thought possible. I am more patient and kind, and I care less about petty things like a dirty house, or how I look. His diagnosis has allowed me to stop and really enjoy him and his sister in ways that wouldn't have been possible before. I have learned what really matters in life, and I have also been shown how amazing the people around you can be and what a huge difference a simple gesture can make in someone elses life. Brayden is thriving in his own way and even on terribly hard days we are still thankful for what we have!
 

3 comments:

  1. I pray for this little guy every day.

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  2. You guys are an incredible inspiration.

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  3. The boy is really wanderful and he deserves the best for his life and parents.

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