Thursday, February 4, 2021

Here's What I Would Have Said for World Cancer Day (Day 35)

Earlier this evening, I was prepping for a very last minute interview with a radio station in London about World Cancer Day and the impact of the pandemic on children with cancer. 

Lily in the PICU in May 2007

I was bumped so they could cover Majorie Taylor Greene.* 

If only ending childhood cancer was as easy as a vote.  Had the interview happened, here's what I would have said, and then some: 

Childhood cancer combined with a global pandemic is a toxic combination of two uncontrollable beasts. 

Childhood cancer doesn't care that there is a global pandemic. It is a rare disease; but the moment it crosses your threshold it ceases to be rare and is suddenly the most familiar, persistent drum beat. The incident rates simply do not matter--because childhood cancer is in your home, your family and your child. 

And even though you don't realize it at first, you can tell this is a forever thing. 

Since the start of all this, on Lily's 14th Birthday (March 13. 2020), I keep measuring our journey that began 14 years ago, against the journeys of those kids diagnosed now. 

Fourteen years ago, when Lily was in treatment, it was the three of us--Mike, Lily and me--together in the PICU. We found strength in the stream of visitors who came to the scariest place on earth to remind us that we were not walking in darkness alone. 

But, now, the pandemic slammed visitation shut--dividing families, separating siblings and keeping spouses apart. We had only one child in 2007--so we just worried about our pets at home. But, what if, we had Chloe and Nick, who would care for them when the world was isolating itself from a virus? 

And then, we traveled. We traveled to Houston, Texas for the Proton Radiation that was not available elsewhere and that would save our daughter's life. What if that happened in May 2020--how would we ever board a plane with our baby, fresh from 4 brain surgeries, in the midst of a pandemic killing people? Where would we stay if we needed lodging when the Ronald McDonald Houses and hotels were closing down because of outbreaks?

And how would one of us handle the daily sedation for 6 weeks at the Proton Center. Who would open the car door, while holding our screaming toddler who woke up from sedation and radiation scared? How would we make it? What if our jobs were lost in the economic downturn that was a side effect of COVID-19? What if we had no income and could not buy groceries? Or pay for the 7 co-pays each week for PT, OT and clinic visits? What then? How could we handle weekly COVID tests before procedures? How could we watch our toddler be swabbed--one more medical test and one more trauma to add to the growing pile of cancer trauma?

I know you can drive yourself crazy with what-ifs. But once childhood cancer is in your life, those other kids--the kids who have been diagnosed and those who have not--those kids are in your life too, forever. It does not matter where they live. It does not matter which cancer they have. We are invested and committed to cures and safer treatments for all children. We have no choice--the world may bump us for a Congresswoman or a pandemic at any moment--so we have to have each other's backs. We have to save our children and we absolutely cannot do it alone. 

The families who continue to battle cancer during this pandemic are not alone--there was the incredible COVID Emergency Fund from Alex's Lemonade Stand Foundation (ALSF) that helped over 2,100 families in treatment with groceries. The ALSF Travel for Care team helped 430 families in 2020 travel in untenable circumstances. Supporters everywhere held and supported socially distant and virtual fundraisers.  So many of you came to our lemonade stand and donated to Alex's in honor of Lily. And those donations--they are ones who helped families put food on their table and the ones that helped researchers continue the science that will find safer treatments and cures. 

I have the incredible honor and blessing of chatting with these heroic researchers on a weekly basis. When the world shut down in 2020, labs did too. Researchers told me stories of racing to secure in-process experiments--desperate to ensure work was not lost. And they did not do it just because it was their job--they did it because they know what's at stake: children. 

Clinicians found ways for children to be able to access clinical trial drugs locally, versus having to travel to the host clinic. Scientists turned their attention to data analysis and journal review. They opened their labs as soon as they could. They worked and fought along with us--the parents and the families and the children. The drumbeat of childhood cancer is forever--but even louder is the rhythm of the search for cures. 

And that, my friends, is what I want everyone to know this World Cancer Day. Childhood cancer knows no boundaries and neither does hope. It is the hope that keeps us pushing forward for cures. 


*I mean, really? 

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