Tuesday, September 04, 2018

September is Childhood Cancer Awareness Month

I met the Shaw women through blogging 15 years ago. Four sisters, their cousin and their mother who is now over 90 all bloggers. All were pastors’ wives or teachers or both.  They are an amazing family.  Now they are all on Facebook, so I follow and talk to them there. This post is from Facebook and is by Larisa, Carol’s daughter, whose daughter and Carol’s granddaughter, Lily, was diagnosed with cancer over 10 years ago, had passed the important milestones, and then two years ago had a relapse.  She writes:

September college football, relapse, end of treatment, childhood cancer awareness month!

I head into September conflicted once again. 10 years ago the first September after Lily was diagnosed I charged into the month determined to raise awareness for childhood cancer.

The last 10 years hasn’t weakened my resolve, but it has rocked me to the core. The first go around I was filled with the hope and confidence of a fighter in their first fight beating their opponent. Now bloody and tired we are trying to deliver the knock out punch praying cancer stays down on the mat for not sure how much more we can take.

2 years ago on September 1st I remember feeling almost guilty posting about childhood cancer awareness month as I thought about Lily surpassing the ages of many of the friends we had lost. She was doing so well. I remember telling Deb at a fundraiser I felt we had reached the point cancer didn’t rule our lives.

That obviously all changed Sept 22 of that year with one blood test. Over the past two years I have waffled between thankful my baby is kicking cancer’s butt for the second time and very mad/sad over the fact she would have to deal with this all again after overcoming so much. I’m mad I couldn’t protect her from that. Mad she has so many horrible side effects. Mad she missed out on so much.

Many people say cancer parents are so strong. I don’t know how accurate that is. Often I feel like a stronger person would be able to protect their child from the horrors, instead as a cancer mom I am responsible for making sure she gets to and through every single bit of torture that could kill the cancer and then smile and continue life as if this is all normal.

I count out 20 or more pills a day for my child to take.

When she hurts I offer up not Tylenol, but oxycodone.

I thank the nurses when they hook her up to toxic chemo therapies.

I calmly call over a nurse and doctors when her throat starts closing from infusions.

I have pushed chemotherapy directly into her blood stream.

I kiss her forehead and help them position her as she drifts off to sleep so they can inject poison into her spine.

I sucked dead skin out of her mouth with a small vacuum and hid the flesh that came out so she wouldn’t see how bad it was.

I’ve helped them hold her down to give painful shots.

I silence IV pumps when I can’t take the beeping anymore.

I have stayed up all night to press the morphine button so she will sleep through the pain. Praying she wouldn’t remember the pain and she wouldn’t become an addict.

I have given multiple shots a day into her abdomen. I have asked her younger sister to give her shots too when I wasn’t there .

I have smiled and tried not to act like it didn’t make a small part of me feel inadequate when some well meaning parent gave me a homeopathic “cure” that I knew was bogus, but still made me question myself.

I have brushed out clumps of hair from her head. Twice.

I have smiled and laughed as they have shaved off her beautiful blonde hair. Twice.

I have kissed her forehead and caressed her face with the true intentions to see if she has a fever.

I have remained calm when people have asked what we did to cause the cancer.

I have told her I needed a shower when really I just needed the water running so I could cry without her hearing.

People think cancer moms are strong but we are just doing what we have to do.

I can’t even speak for all cancer moms because while I have done many hard things, I have never had to do and pray I never will have to others.

Explain to my child what hospice is.

Hold her hand and kiss her and let her know it’s alright to go.

Go to her funeral.

Wake up each day and go to sleep not being able to do all the horrifying things that I’m privileged as a cancer mom to be able to keep doing.

The true heroes in the battle are our kids. I am as close to her battle as I can be, but never once have I had to actually take all those pills or head off to clinic finally feeling ok after weeks of feeling bad only to get another dose of medicine that will make me feel horrible again.

While I know as an adult - true friends are hard to come by, it is a hard lesson she had learned now twice that while everyone comes around the initial diagnosis that their lives continue and that when your life is chemo and blood counts it is hard to identify when their lives are homework, boys and sports. Sometimes it leaves you feeling like an outsider just wanting to be part of it.

Or that when you have no hair, it’s horrifying but it’s also hard when your hair grows back and no one understands the battle you are still raging.

So it has taken me 3 days into September to figure out what to say. And I still haven’t. I’m pretty sure no one wants to read a depressing post but it’s honestly where we are right now. So, I still have nothing much to say inspirational other than we need a cure. We need to do better for these kids. We need to better support them and their families. And September is our month as childhood cancer fighters to bring that awareness to the forefront.

I have watched the past couple days while numerous friends have turned FB gold for the kids. Some I know have done it in honor of Lily and that makes my heart sing. We have come so far in 10 years and I appreciate those of you turning FB gold while I have been standing in the corner of the ring trying to figure out how to finish this fight.

So for September if everyone who follows this page could just do one thing to help the kids fighting this battle. Give a hug to a friend fighting. Take a meal to a patient. Change your FB page gold to support the kids. Make a donation (no matter how small) to an organization that helps find a cure or support families. Just one small gesture will make the difference.

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