I’ve been having a hard time finding the words to describe how this image affects me.

There is still a part of me that looks at this and is in utter disbelief that my child- my small, sweet, innocent, amazing, loved, soulmate daughter could be the child in this photograph.

That same part of me that will whisper “wake up from this nightmare” for as long as we are walking this awful path. Just as another part of me can not cease in chanting “Please God, just let it be me and not her. Just let it be me and NOT HER.”  I know rationally that all of those thoughts are wasted though. Only one thing matters.

This is my seven-year-old daughter. She has cancer.

This was taken on a day that we had chemotherapy on the floor at the children’s hospital instead of in the infusion clinic. This room is actually much nicer and more cheery than our usual chemo spot (simply because it has a window and we can not hear other children crying), and just happened to be where we ended up the day I carried my camera along.

What gets to me about this picture is…. everything, I suppose.

She is so small. I guess cancer doesn’t care.

She shouldn’t be there. She is so isolated from the things that children should be doing on a Sunday afternoon. Her friends were at birthday parties (I know this because she was missing a good friend’s party), playing in the snow, sledding, playing with other children – running and jumping and laughing and living. My daughter was sitting in a chair, waiting for a pump to slowly push harsh chemicals into her body, which we had done 9 out of the preceding 11 days (and countless times before this).

What is she thinking while she looks out the window at the world that continues moving without us? If she knew what I know, she would undoubtedly feel frustration that our society hasn’t made bigger strides towards easier treatments for children with cancer. She would ask why we aren’t making her a priority in our funding for the future. Luckily, she doesn’t know what I know. She just knows that she is a child who has to do this to get better.

The way that she is holding HoneyBear, who is her constant and most reliable companion, breaks my heart. It is how she has always held him when she needed comfort. He never fails to provide it either, whether it be during surgeries, radiation, chemotherapy, or some other difficult experience. He is our family’s most important possession (seriously). He is her best friend. 

Thank you, God, for HoneyBear.

I’ve been asked a number of times if it is fairly clear that our current treatment should get her to the point that we need her to be for stem cell transplant. The sad reality is that nothing is clear right now in regards to treatment. It’s our best next guess based on the pieced together research that we have to go on (and admittedly, based on the expertise of the Wilms specialist in D.C.- who I have to trust knows more than anyone else how to treat this). It is terrifying to put your trust in doctors and hospitals and poisons (and even in God) when it’s your child – the very core of your heart and soul – on the line.

After relapse, we did some harsh chemotherapy to try to obliterate this beast, and the fact that it didn’t work on it’s own is so scary for us. I pray every day that this alternate regimen can be the crusader against the nodule that refuses to leave her alone, and that our next scans show complete response. Please keep praying for this with me. Waiting to do the harshest treatment is not easy for any of us. We keep getting prepared and then being told to bide our time a little longer. We learned recently that she will have to skip all public places (basically being isolated) for 100+ days after stem cell transplant… and it will be roughly 6 months before she can go back to school after transplant. All of this makes it even harder to wait. We want to get it over with so we can start mapping out the rest of the treatment plan and try to figure out when we can do the things we miss again. Even Elayna keeps saying that she wants the scans to show that she is ready for the big, hard chemo in Minneapolis so that we can beat this cancer once and for all.  Me too, baby girl.

I don’t share a lot of these feelings and details in our journey because I generally choose to focus on the happier side of things, but I don’t want to sugarcoat childhood cancer either. I took these images and, even though they made my heart hurt, I knew I had to share them. On our Team Elayna page I often show a positive version of her fight, and that is a conscious decision. I need her to remain positive as much as possible (she does pretty well at that most days), and that means that I need you all to remain positive, too. But… please don’t think that I share so many of her smiles because that is all she experiences. That would do her such an awful injustice. She gets up and does what she needs to do every day without complaint to fight this beast, but it is still a fight.

She is fighting for her life.

People keep telling me that I am strong, but I am not any stronger than most mothers. This is just part of being her mother, and I wouldn’t miss any of it. In fact, I absolutely refuse to miss a day of her life right now because I am not guaranteed any amount of time (none of us are, I realize). I will not let her life be about my fear or what cancer is stealing from us. Her life is about her living every moment as much as she can. We focus on that. Happiness is a choice I make every day. Often several times a day. Sometimes more. 

Her life is about how strong and amazing she is in the face of a monster that many of us would not be able to face with such boldness of faith. Truly.

I keep thinking of the quote that I was shown when she first relapsed:

Fate whispers to the warrior, “You can not withstand the storm.”

The warrior whispers back, “I AM the storm.”

PLEASE go to www.unravelpediatriccancer.org and find ways to make a difference. Please. Donate in Elayna’s honor, do a small fund-raiser (or a big one), promote awareness, or find another way to show that you care about childhood cancer. I know that you care, so do not look away. There are so many more ways that you might realize to help, and we really can change this.