Monday, May 2, 2022

I wished for a cure for brain tumors. (Day 122, Year 2)

Tonight before leaving for dance, Lily picked up a dandelion and said, "Sorry Mom, old habits."

She blew on her dandelion puff ball and then waved off any seeds that did not leave with their colleagues. I asked what she wished for. 

"I told you Mom, old habits. I wished for a cure for brain tumors."

She's 16 years old and has been making that wish on dandelions since she was 2 years old. 

It's May, which is the start of Brain Tumor Awareness month and also happens to be the month that Lily was diagnosed with a brain tumor 15 years ago on May 16, 2007. 

Our family loves a good theme; so if you are going to be diagnosed with a brain tumor, you do it in May, apparently. 

This is the start of a hard cycle of time for me. In the early years after her diagnosis, I resisted the hard time feelings that May brought on, which made May even harder. I've learned to accept it all now; the feelings are not easier, but I know that is just the way it is and it is forever. 

All month, my personal social media feeds will be filled with brain tumor awareness posts. My network is filled with other brain tumor families. And while you might think having a daughter who battled a pediatric brain tumor at just 14 months old makes you a brain tumor expert; that really isn't the case. It is all the other families--all their stories--that give me the expertise to tell you the things I am about to tell you. 

These are the things I want you to know about pediatric brain tumors:

1. Pediatric brain tumors are the deadliest form of childhood cancer; yet children survive and thrive in spite of this diagnosis. 

I think understanding these two facts together is important. When Lily's pathology came back, a doctor said, "Oh she has the good one." But, there are not good brain tumors. Lily survived. Other children, like Campbell and Jaxson and Jordan and Colin and Cooper and Madison and Micah and Paulie and Asher--they had the good one, too. But they have died. 

When your child is diagnosed, you don't know, you can't know and all you want is to know that your child will survive. Brain tumors take away all the knowing. 

2. The end of treatment is not the end of cancer. 

Lily was about 9 years old when she told me, "Mommy, no one told me childhood cancer was forever." As she grew up, she'd kept echoing this. Once, while being interviewed on the news, Lily said, "That's just how this is for kids like us. We keep fighting cancer, even when we don't it." 

It's forever. This is forever and always and it is not what any of us want, but I will carry any burden as long as it means I get to keep my child here. 

3. My daughter is not broken.

Friends, Lily has been through it. But, she is not broken. She is not damaged. As much as that brain tumor tried to rob her of everything normal, Lily somehow found a way around it all. She fights everyday for regular things. She is constantly under the microscope of coaches and teachers and other kids. The standards to which Lily must perform are always higher and stricter. Her tight rope is narrow and one misstep, one inadvertent lack of vigilance and she falls--teachers will perceive her as damaged and in capable; coaches will sideline her; kids will think she cannot keep up. 

And they just don't get it. 

4. Kids carry each others stories with them. 

I mentioned before about Lily crying about the Eiffel Tower and lighting candles all over France for all the girls who wouldn't get to do the things Lily was getting to do. Kids like Lily carry the stories of all the children who battle brain tumors with them. It is the blessing of all this--to have a child who is so aware of others, constantly thinking about pain others feel and then trying so hard to live a full, complete life for others. 

5. Science matters. Research matters.

Since Lily's diagnosis, the landscape of childhood cancer treatment has changed. Surgeries to remove tumors have become more advanced and precise. Treatments have become more targeted. There is early promise in certain types of immunotherapies. But, still, children are diagnosed everyday. Children are waiting for safer treatment and children are dying waiting. Science and research matter. Funding innovative pediatric oncology research will save lives. So, donate. You all know where, right? 

Alex's Lemonade Stand Foundation funds innovative, cutting edge research aimed at finding safer treatments and cures for all types of childhood cancer. As a family, we've supported ALSF since 2007. I also write for them. We believe in research; and we believe there will be cures. (You can donate here.)

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