Saturday, January 19, 2013

Let this be the end.

I can't believe we've made it to this point, looking back over the last 2 + years I felt such a pit of helplessness when the oncologist told us the duration of treatment. How will we ever survive this? She will be 6 years old before she ever gets to experience a normal life again. She will be 11 years old before she will ever hear the word cured.

I often daydream about that day, the day I will feel the need to truly celebrate, the milestone every parent, wishes, hopes, prays (whatever your comfortable with) for. Your child is cured. Such heavy words, words that we hang on to, a word we whisper to ourselves at night before we close our eyes and try to sleep. A life that seems unreachable, and yet we long for it, day after day, appointment after appointment.

I have had nightmares about a day we take Brinley in for her regular check up, and her counts are low and bottoming out, and maybe we need to look at the bone marrow. I can tell you now that in my dreams, I've handled things much differently than how I've handled it during the last few days.

 The word relapse to a parent is indescribable  It's flashbacks of everything your child has been through, the fights about medication, the tummy aches, hair loss, bone pain, mouth sores, lack of appetite, and too much appetite  It's the fatigue, and the vomiting  the late night calls to your closest friends and family because you need to scream. It's the tears on the way into the hospital, the early morning coffee with the nurses, the over night bags, and pacing the sterile halls of the oncology floors waiting for an answer. It's the accusing stares because your child has gained weight due to the steroids, and the scowls because clearly you're an awful parent the moment your child has a roid rage. It's the surrendering sobs of a mother because after braving the storm once, she now has to button down the hatches, gather herself and get back on board the cancer ship.

And as I give my daughter her last chemo pill, a moment that should be ceremonious, I feel a small tinge of defeat. She may be off treatment for good...or maybe only for a few weeks. I'm also left thinking that today someone is getting the news that their child has cancer. They are taking that long walk back to the car in a state of shock, asking themselves, "is this really happening?" They will wake up and hope it's all a dream until they realize that their child's chemo appointment is in a few hours.  Someone else will be getting the news that there is nothing more that can be done, and the doctors have exhausted their resources, and that sometimes, cancer wins. Someone will be kissing and holding their child for the last time. Whispering into their ear that they love them, and that it's ok to let go.

So as I sit here and hope that I cancer will not continue to play an active role in our life, the word cancer becomes a lump in another parents throat.

Our little family has been through a lot over the course of 2 years. We've struggled emotionally, mentally, and physically. I've had to learn to let people in, and let them help me because without them, there is no way I can juggle everything, a few balls will fall, and I've had to learn to dust them off and ask for help. I've also had to let people go. Superficial, inauthentic people do not belong in my life, this for me as been a gradual realization. I simply will no longer make time and mentally invest myself on someone I do not value, or does not value me. I've taken steps to keep certain people at an arms length for sanity reasons, and some people I have severed ties completely. When put into precarious situations I think you have to cut some people lose, you weigh in on those who surround you, do they bring positivity to the table? If not, it's time for them to kick rocks.

Brinley has taught me more than I could have ever imagined. The day I had her and looked into those beautiful brown eyes, I had no idea the life lessons she would teach me.  She has taught me that there is a certain grace and ease that comes to coping with cancer. Every treatment, she has faced her fears, refusing to back down or give in. No cancer you don't get to have this diva. She has laughed at moments when I thought I might burst into a thousand pieces. She is resilient, brave, and she is strong. For the last 2 years this has been her life, she is more than comfortable in a hospital, she knows her role as a patient far too well. My daughter has fought such an amazing battle, and for a brief moment, we need to celebrate. And that's exactly what was done tonight. We had cake, ice cream, and sparkling apple cider...cheers to the lets prepare for the future.

My son has learned the gift of empathy and compassion. He is beyond his years when it comes to having a kind and gentle heart. Carter has developed this sense of protection over his family. He has grown to notice the importance of all of us being under one roof, all in sync, all supportive of one another. He is wild, crazy, incredibly funny and insightful. He has missed out on not having his mom and sister 100% of the time. There are times that he would come home with the biggest grin on his face, and a perfect test score, but if this happened to be on a day that Brinley's counts were bad, or she was sick he would end up playing 2nd fiddler, and that wasn't fair. I'm very lucky to have such an understanding forgiving son, all I can hope is that this experience hasn't scarred him in any way.

Blake has been my life line through out this. When Brinley was first diagnosed, I had sat down with my mom and asked her, "how will my marriage survive this?"  It seems like such an off the wall, silly thing to ask now that I look back. How will it survive? You'll cling to each other that's how, because providing a stable and loving environment is the best thing for Brinley. It's because you love each other and can understand exactly what the other one is going through. I can be emotional, and struggling alone inside my head and Blake just knows. He knows not to ask, not to talk about it, but just to hold me, kiss my forehead and tell me it'll be ok...which usually results in me sobbing, wondering how I got so lucky. So did my marriage survive cancer? The short answer is no. The long answer is that my marriage before cancer is not what I came out with. My marriage today is much different after living through the last 2 years, we are stronger than before. We hold the ability to balance each other out, when I feel like I'm going to break, he's very good and bringing back to earth and having me refocus on what is in front of me. He's positive, and is always able to point out the silver lining is any given situation. At times the last thing I want is to hear is the up side, sometimes I want to sit there and be miserable, but it's an attribute of his that I can truly admire. He makes me insanely proud, he is an amazing husband and daddy, and I am so grateful to be wildly in love with this man.

Again, we are so very lucky to have so many amazing people in our lives, and even though we may start this struggle again, our strength and determination comes from our supporters.  And because of the encouragement of others, we're able to pass that off to our daughter. So a thank you to those people who have followed Brinley's journey. It's not over yet, we're just turning the page.


  1. Love you and your family SO MUCH! You are all amazing and work so well together. I get a little choked up reading this. I'm hoping the best for you!

  2. I am hoping for the best too. I have been following brinleys journey. you guys are so strong. love you all