Tag Archives: leukemia

Difficult news

I am not sure how to begin this blog so I will just come out and say it.  Last week I shared with you Maddie’s inspirational story – she is an 8-year-old girl who has been struggling with leukemia more than half her life. Her parents had sought out a highly experimental immunotherapy. When I met her just a few weeks ago, it was clear the therapy was having a powerful effect on the leukemia and she was back to being a vibrant 8-year-old girl.

This week, I learned the sad news that Maddie’s leukemia has returned, and that she and her family are considering next steps.  The cancer researcher in me is not surprised and sees this as further evidence we must proceed with research at all deliberate speed; my human side is devastated.  Our thoughts and prayers go out to Maddie and her family at this difficult time.

Ironically, I learned this news on the same day that our federal government shut down.  Indeed, the email telling me of Maddie’s relapse was sandwiched between two emails from colleagues at the National Cancer Institute (NCI) announcing they were being placed on furlough due to the shutdown.  What does this mean? In addition to all of the issues you heard about in the news, it means the suspension of new NCI clinical cancer trials and review of new grant proposals. NCI employees are now legally forbidden from contacting cancer researcher collaborators across the country. There is no question in my mind that the progress of cancer research will be slowed.

Last week, I described how Maddie had matured beyond her years.  She has a remarkable understanding of how her personal story impacts the bigger picture, yet still enjoys being a young girl.  Sadly, she once again has to put those childhood pursuits aside to deal with an incredibly difficult challenge.  Meanwhile, our congressional leaders continue to act like poorly-behaved children and focus on themselves, and not on the very real needs of those they serve.

There is an awful symmetry here, and it leads one to think about what would happen with respect to setting priorities if roles were reversed.  If our congressional leaders were in Maddie’s shoes (or those of her parents), would that change their approach?   I think it would.   And how about the other way around?  I am not one to quote Bible verses, but Isaiah 11:6 seems particularly poignant to me at this point in time: “and a little child shall lead them.”

If only it were so…