Thursday, May 6, 2021

May Awareness (Day 126)

May is Brain Tumor Awareness Month (I am always aware!). It is also the month that Lily was diagnosed with ependymoma. Lily was diagnosed on my Dad's birthday--May 16. She was 14 months old. 

When we got the news that there was a mass on Lily's brain, I hadn't yet called my Dad to tell him Happy Birthday. Instead, for his 87th birthday, I told him his only grandchild had a brain tumor. 

My father, if he was alive, would be turning 101. 

I sort of hate May 16. 

May is also the month of Lily's original due date. And it is Preeclampsia Awareness Month. Lily was born 29 weeks early because of my severe and sudden preeclampsia, a disorder of pregnancy that is life-threatening. The only cure is delivery. I had an emergency c-section to save my life and Lily's. If Lily been born on her original due date, she would have been ineligible for the proton radiation that saved her life. In a weird way, preeclampsia, which threatened her life and then saved hers later on. 

Lily's original due date nearly coincides with the birthday of Campbell Hoyt. Campbell died when she was 8 years old from ependymoma--the same cancer Lily had. I forever remain baffled at who lives and who dies. It is not guilt or a feeling of blessing I carry--it is more fear and a bizarre sense of good fortune--always. 

I never met Campbell, but her mother is a dear friend. She is the kind of friend I can text anytime and out of the blue and share my darkest fears and my greatest joys. Robin carries the weight of missing her daughter--a weight I cannot image lifting. But, Robin also carries the love and joy of seeing my daughter grow up. I cannot think of a better woman than Robin--only other equals--all those brain tumor and cancer moms that I also have on my "text in an emergency and all situations of great joy" list.  None of our stories are the same--but the war binds us together. 

This list of brain tumor and cancer moms seems to grow by the week--which is both heartbreaking and incredibly heartwarming. We haven't stopped pediatric cancer yet--so we should not ever stop loving and supporting each other. 

Campbell should be turning 15 years old this weekend.  I always carry her name with me. I think of Campbell every single day. Her parents continue to fight for cures for kids through Team Campbell and are always supportive of the work our family does for Alex's Lemonade Stand Foundation. Finding cures for pediatric brain tumors takes all of us--working together, raising money, funding science and loving each other enough to never stop. 

So, back where I started with Brain Tumor Awareness month. Here are the things I think you should know about pediatric brain tumors:

1. No one knows why Lily had a brain tumor. They have no idea. But, everyone asks me, always. I wish they'd stop.

2. The diagnosis of a brain tumor is one of the most terrifying moments a parent can face. I relive those moments in the emergency room at least 7 times a day. And I don't think any amount of therapy will stop that. Part of me wants to keep reliving it--so someday I might understand. 

3. Brain tumors are the deadliest form of pediatric cancer.  One type--DIPG--has a zero percent survival rate. But, research is working to prolong survival for kids with DIPG and I know in my heart and my mind that cures are next for these kids. Next might take a while--but I believe it will happen. 

4. Plenty of kids survive--like Lily. Lily's diagnosis left her with a myriad of side effects--but it did not leave her disabled or damaged or not normal. Sometimes when people read "brain tumor," they are surprised at what my daughter can do. 

But they shouldn't be: My daughter cheated due dates and death and legs that did not work and vertigo that wouldn't leave. Lily adapts, so she can do anything, even get me to smile during May. 





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