Awareness is survival

September is Pediatric Cancer Awareness Month. It is a very important month...but so is every other day of the year. We need to love and be aware every day of the year. Life is short...these kids need help making it longer.

When we were in the hospital with bryanna last September, we knew that it was pediatric awareness month - but as we sat by Bryanna's side as she battled ETP-ALL, the brutal chemo therapy, nausea, fatigue, overall sickness and then septic shock leading to intubation (The first of 2 times that she required life support)...all in the month of September...I couldn't stop to think about awareness or funding or all the people who are rallying around the nation to help kids like Bryanna. I was not even remotely thinking about cancer awareness, lighting the night, lighting it up gold or any other slogan. I only focused on loving my dying little girl. I focused on supporting my two other kids (who are equally as important) who were struggling to make sense of cancer. I was trying to eat and drink something each day beyond the cold cup of coffee I got sometime early in the morning that day. I was trying to be aware of the immense exhaustion and stress that Mike was dealing with as he had to continue working so that we would not lose our clients. I was aware of the guilt we both felt when we weren't by her side, even though we knew one of us was always by her side. I was aware of that Mike would make sure my gas tank was full so that I wouldn't have to stop to get gas when I was so exhausted. I was aware of the sorrow and fear in the eyes of the parents on hemonc. I saw and was aware of the encouragement from the team when I would rock the halls with Bryanna and annoy her by singing the same song over and over. They knew that these moments were miserable and painful but so important to her. They also knew the amount of energy it took me to put on that brave and happy face and sing and encourage her as we circled the floor in her special wheelchair - reclined, padded with pillows and secured with a seat belt. It was a time where every being in our body was praying for a miracle, still believing that she would be able to beat this.

September was a month where we were already adjusted to our new routine. We no longer were foreign to the staff, to the hospital or to the treatment. We made friends with the janitors and the parking attendants. We often found a special note from the janitor reminding us to smile and to take care of ourselves. We would find our cars parked in the closest spot to the door by the elevators that we would use after using valets on the mornings that there was no parking. This was not by chance. We would have conversations with the lady at registration about our kids, we would give updates to people we met in the cafeteria. We were surviving. I would show a brave and encouraging face to Bryanna, get in my car and scream and cry. I would compose myself once again and be brave in front of Evey and Liam. Cancer meant that the short weekend that Bryanna was home, Mike and I stayed up literally all night to ensure that she got her medicine. Cancer meant that this same weekend, we missed my brother's wedding. Cancer meant that we would double check the dosage that we drew up to make sure that that narcotics, anti-nausea and every other one of the 15 drugs prescribed to Bryanna was given correctly at 1 am and 4 am and all throughout the day.

Cancer is telling Evey and Liam that Bryanna is going to beat it, and that she won't die. Cancer is being confronted by the kids demanding to know why she died when I promised she wasn't going to. Cancer is not finding the right words, not feeling like you did enough and not being able to make it better. Cancer is telling people that you are okay, but really none of us are.

Cancer is exhausting-scary-messy-painful-feeding tube-TPN- potty troubling- vomiting- cleaning - requiring bravery disease. That is the face of cancer. Cancer meant that while I was waiting for Mike in the hall by the cafeteria, a random woman walked over and gave me a hug...because I was leaning against the wall crying...not caring who saw me.

Cancer is realizing that someone stopped.

Cancer affects the patient so greatly that should you survive, it is absolutely life changing. Had Bryanna survived, she would have been met with severe side affects such as a certain infertility, secondary cancers, and had she survived long enough to get radiation - she would have been affected intellectually. Cancer is not a disease that you take a pill and move on. It is a life changing, soul searching long term ordeal. It affects every part of your being. It is watching your daughter realize that she is losing her hair. It is hearing your 9 year old daughter say she knows she is going to die. It is hearing your child scream and beg for the pain to stop. Cancer is watching your child beg for the nurse to hurry with her sedation before her weekly IT because she knew it was the only way she didn't feel pain. Cancer is watching your healthy daughter become frail and pale. It is watching the life go out of her eyes, it is holding her in the middle of the night because she is too scared to be by herself. Cancer means that you run across the hospital down two floors all the way to the cafeteria 5 minutes before it closes for the pizza that she is craving. You go because you would do anything for her, and this is the first time in a week she asked for food. Cancer means that you end up eating that pizza cold across the room from her because she can't handle the smell of it and no longer has an appetite. Cancer means that Mike goes to the ends of the earth to get cottage cheese when that's what she was craving - and when no one would help him, he went into the kitchen to ask the guy to give it to him, which he of course then purchased. Cancer to a parent means you do what you have to do to make your child okay. Cancer meant that the cottage cheese was put in the refrigerator and never eaten because she couldn't stop throwing up. Cancer means that you can't hold your baby girl because you are so run down that you got sick. Holding your child at that point now meant that you could literally kill her from the virus that you have.

Cancer means that your little girl goes from looking healthy (even though you knew something was wrong)

... to being so sick she couldn't sit unsupported...

So sick that she only had energy to draw a circle...one time.

and so sick that she couldn't wake up when super heroes came and visited.

Now we just have pictures.

We just have memories.
Memories that we hope to never forget because we know we can never make any more with Bryanna. This is what cancer means.

Now, as I sit here in my kitchen and not in the hospital, with Evey and Liam making a fort without Bryanna...as I sit here thinking about cancer awareness, I am painfully aware what pediatric cancer is. I am painfully aware when I go grocery shopping, when I go back to school shopping and when I prepare the kids for a new year of school. Last year - Bryanna was in 4th grade...and the entire school year felt like an eternity. Cancer meant that last summer she was diagnosed, and then during the school year she was put on life support twice and then died. Cancer meant that we still had to get Evey and Liam through the rest of their school year. Cancer means that we still have to pick up the pieces as school starts in a few days knowing that everyone else has moved on, but we still struggle. She would have been in 5th grade. Not yet a year has passed since she has passed away and yet Cancer has made it so we are only preparing two kids to advance a year. Cancer has made it so Mike and I weigh the emotional risk of watching certain movies or going to certain places. Cancer means we do not have our beautiful Bryanna here with us.

Cancer means that we need so much more in funding...more than 4% to find better treatments and cures for pediatric cancers...and especially those such as ETP-ALL which has very little research and virtually no specific treatment protocol like AML and T-Cell ALL. This means that as much as I know what this month is, I am also painfully aware what cancer is every single day of the year. But, I am also aware that without awareness, we as a society will never fully understand the magnitude of their impact on these children. We as a society can help change the lives of these children. Because of awarness and national efforts, parents can focus on their kids and not worry about going gold. I am miserably aware that it didn't work for Bryanna...but let's continue to be aware of what is needed and work together to help other kids...No kid should have to go through what Bryanna did. No kid should have to suffer and feel the pain and fear like Bryanna did. No child should ever have to visit their sister's grave site or look for signs that she is still with them.

Cancer is isolating yet we are never alone in this. It's tough but it's not enough. We need to be aware. We need to kill the cancer so it doesn't kill our kids anymore. So, when I can no longer avoid the grocery store and I prepare myself as I get up to the register and am asked every single time if I want to donate to pediatric cancer, and as I watch the St. Judes commercials that are a constant reminder of what Bryanna went through (only they don't show the dark side of it), I remind myself that it is because of everyone coming together that one day we will have a cure. It is because we go gold in September every year that more people are aware of kids like Bryanna. It is because of this that the parents do not have to think about going gold in September when they are in the hospital with their child. It is because of this that folks are more aware of the lack of funding. People are more aware that kids die all the time. Kids like Bryanna. People become more aware that siblings like Evey and Liam are left behind. All because of cancer.

It is because of this that I hope that one day there will be no cancer.

It can't come soon enough.

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