September is for GOLD.

Once upon a time I was a mom to three beautiful girls. I was tired and happy and unsure if I was doing anything right. I was chasing a 2 year old, nursing a little one and driving one lady to preschool. In the chaos of that time, those girls kept growing… and growing until one day I had my little kindergartener. Life was good. I know cranky mommy came out and crazy girls made for exhausting days but at the end of every day I plopped on the couch with the divine knowledge that we made it. We made it to bedtime and everyone was still alive- job.well.done.

madeline gold

Life was good, then life was broken. In an instant our world changed. Sitting, or maybe we were standing in a room surrounded by beeping machines and Neurosurgeons we were told that the little area from the CT scan, the reason for the late night MRI… was the worst case scenario. They asked if we wanted to see it, I couldn’t. Madeline was diagnosed at that moment with DIPG, Diffuse Intrinsic Pontine Glioma, a rare and inoperable brainstem tumor that had spider webbed through her brainstem and was stealing her basic functions. We then met our new doctor- Dr. Porter. She was not only the most amazing Pediatric Oncologist but she headed the Journeys Program. We were aligned with the best person to help our daughter live and enjoy- and die.

Your child has cancer. Madeline was dying. My dimpled kindergartener, who loved her sisters BIG and was the most compassionate child was dying. Madeline’s infectious giggle and her raspy frog voice, her amazing hazel eyes… her little hands and her dreamy hair would be gone from this earth soon. Soon there would be no fresh memories or artwork for me to hang. Madeline Elizabeth Musto was preparing us for her death…

We were gifted 5 days. We didn’t get the normal cancer journey- clinic, treatments, chemo, radiation and steroids. We were gifted 5 days that were spent the way we loved- together. We didn’t know that it would only be 5 days, those things we don’t get to pick. Madeline’s tumor ruptured and took her faster than any could imagine. Only 5 days to love up on her and figure out the next step…

DIPG stole Madeline’s last breath, her last blink and her last heartbeat. Imagine laying with your daughter and feeling her skin turn cold, hearing her last heartbeats. I miss her heartbeats. Imagine laying with your daughters as they sang their sister to heaven… songs like ‘You are My Sunshine’ and ‘The ABC song’. As I lay there, on that hospital bed, trying to memorize her before she was gone. I miss her…

In a moment my world broke, I have a hole in my soul that I can not fix or fill or get rid of- it is a part of me. My girls have a hole to live on with… to carry her with them. DIPG stole my Madeline, my Mads… my first lovely.

Life was good, now it is gold. Life is GOLD. I spend most everyday sharing, supporting, carrying, spreading awareness and working to change this. There are no days in my life that the children who are fighting, have fought and have joined Madeline in heaven are not at the front of my thoughts. Those amazing kiddos who spend days at the hospital, while we head to the beach. Those kids who rock their ports and bald heads, steroid cheeks and scars of surgeries… who wake up and get better or don’t. That’s the thing, it is a roulette table, there is no rhyme or reason in who lives and who dies. Who makes the 5 year mark and who doesn’t… it isn’t fair at all.

Life isn’t fair, we all know that. Childhood Cancer does not judge, discriminate or care about your world. Childhood Cancer is probably the only one true thing that truly doesn’t care about your race, gender, orientation, socioeconomic status… whatever… Childhood Cancer doesn’t care if you a baby or a teen, a poor person or a rich one, an Irish Catholic child or a Muslim one… black, white, pink, blue… whatever. Every single one of us has the roulette red or black, 17 or 13, odd or even… chance. How do you like them odds????

Your child has as much a chance to die of cancer as mine. If your one of the lucky ones who lives your family and life is burdened with scanxiety (anxiety and fear every.single.scan that cancer returned)… your body will carry the lasting impact of those treatments. For the chemo you received when you were 3 and 6 your bones will break down and your heart will be more likely to fail. Secondary cancers are common in adulthood. Radiation you received when you were tiny might make it impossible for you as an adult to have a baby… a life event so many of us look forward to. The poisons we heal with have not been improved in 30 years. Our children receive adult doses, because there is not enough study work done to know better.

Life was good. Life is broken. I used to live in a world where I was blissfully unaware of this world of Childhood Cancer, I am sure you did as well. I used to put my 3 girls to bed and stand looking at those sleeping chicks and feel content and proud. I would sit and reflect on the craziness of the day, maybe the funny things that happened, maybe parenting moments I wanted to improve- but I knew I succeeded because at the end of the day we all made it to bed alive. That isn’t the case anymore…

You are aware.   You must know that your family is at risk for this disease to break it as well. This needs to change and change needs to happen here and now. Use your skills to change this, help fund research, talk about it… tell the stories of these kids and help others KNOW the odds and the lack of funding. Talk to your politician friends… seriously. If you own a business GO GOLD… start conversations. If you are a parent- love your child and their odds enough to do this. It starts small… nothing grand… a PTO bubblegum day gets those parents talking (25 cents to chew gum for one day)- even if it is to prove they are better parents for not allowing gum chewing. If you are writer use your tools to share this, or if you are a TV personality use your forum to share this. I am not telling you what to do, only sharing what could change this. Little things multiply and become BIG things… be a part of a little thing. I would be forever grateful and I know so many that would as well.

Go GOLD. Change your profile picture, but do more. Talk. Share. Spread awareness. Do it for Madeline, Myles, Devon, Tyler, Kalina, Onja Rose, Ryan, Catie, Ben, Nick, Luke, RJ, Julian, Ila Jean, Travis, Elijah, Will, Jennifer, Gabby, Talia… that is only a few of those that are with Madeline. Share this. Engage. Change this with the tools you have…

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2 thoughts on “September is for GOLD.

  1. Always love how you get right to the heart of the matter. Losing a child is like losing a limb. The phantom pain never ends.

    We will continue to fight until cancee is gone. Thank you my friend for always giving back and sharing your lovely’s story.

    Liked by 1 person

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