Thursday, May 18, 2017

What doesn't kill you...

I spent nearly two months in the hospital this year with Brent, who is thankfully regaining his strength every day. I have things to work out in my mind.  I really need to work out my muscles as well.  So, I have been preparing for a hundred mile bike ride on June 10th in support of immunotherapy.  I have been writing a bit as I train with my sister and son Alex, both who are joining me in the fundraising event. I thought this entry was worth sharing.

5/10 (27 miles)

It was a lighter day for us after the long ride, really just trying to keep our legs loose.  

I thought, with gratitude, about the scientific community working on cancer.  A number of people have asked me why I am biking for Cancer Research Institute, when we have historically been active in pediatric focused efforts, like Kick-It.   We still support childhood cancer research, which is seriously underfunded.  But as I pedaled along, I thought about Brent and his gauntlet-run through oncology over the past six years and the role that immunotherapy has played.  

Throughout, I have prayed for specific things--for blood counts to rise, for pain to be avoided, for healing to happen.  I prayed all the time.  But often, I simply prayed for guidance.  "Show me what to do, and I will do it."  

Back to immunotherapy.  Brent first had osteosarcoma in 2011, a huge pelvic tumor.  After he had his limb preserving surgery at MSKCC, he was plagued by infection, something that required several other surgeries, further hospitalizations and delays of his chemo, all really bad stuff.  A few months after Brent completed this regimen, I read an article about how folks with infection issues suffered less sarcoma relapse.  I always try to find an upside in our struggles and remember sharing this bit of information with our docs. "Good thing we were dogged with infection."  They were fairly horrified.  The correlation was there, but calling infection good, is like telling a bride that rain on your wedding day is considered good luck--cold comfort when a weather event ranked somewhere between a deluge and a hurricane blows over the reception tent.

We marched onward...and discovered Brent had metastatic melanoma. Curious about how common this diagnosis is in LFS, and desperately seeking treatment ideas, I shared Brent's struggle in Living LFS's online support group. A friend messaged me and offered to text a family friend about Brent, someone who "works in melanoma." Her family friend was Jim Allison, who is now a stadium filling rock star in cancer immunotherapy. Back then, he recommended doing Interferon just as our local team had suggested.  But if it should fail, he recommended that we consult Jedd Wolchok at MSKCC, a former colleague of his. Brent did almost a year of interferon, which is an immunotherapy drug.  Melanoma, thankfully did not return. But as a result, I began following immunotherapy researchers and reading as much as I could about this emerging field.

The most exciting thing for me about immunotherapy, is that it does not rely on p53 function to eradicate cancer.  With Li-Fraumeni Syndrome, Lauren and Brent have only one effective copy of p53. The work of detecting and shutting down a faulty or damaged cell is seriously impaired, which is why my children are so prone to getting cancer in the first place. If the immune system could be harnessed to detect and eradicate cancer, it would bypass a weakened cellular mechanism and not do further damage to that already sketchy process, as chemo and radiation are prone to do, quite indiscriminately.

Brent's melanoma treatment was interrupted by just this sort of collateral damage. He developed treatment induced AML, an aggressive leukemia that requires bone marrow transplant. We were fortunate to have a perfect sibling match and we spent the better part of 2015 in the hospital, fighting to just get to transplant and then going through that arduous process. (Lauren threw a recurrent brain tumor into our summer schedule. It is a ridiculous life with LFS.)  

Brent relapsed almost immediately with AML.  I prayed for health and ideas.  He became desperately ill that autumn, and his oncology team at Rainbow Babies and Children's Hospital tried to just get him home for Christmas. They proposed using the power of Alex's transplanted immune system, boosted with extra T cells, unchecked by any protective immunosuppression.  It was dangerous and uncharted and shockingly, it worked beyond their hopes, although Brent didn't achieve a complete response. We tried epigenetic therapy through the spring, trying to bridge Brent to a trial.   

As I pedaled along, absorbed with the twists and turns and how I came to be training for 100 miles in support of immunotherapy, I wondered if God speaks through Mick Jagger, because the Rolling Stones were stuck in my head--"You can't always get what you want/ but if you try sometimes, well you might find/ you get what you need." Like the persistent infection that nipped at his heels during osteosarcoma, Brent seems to have benefited from a stunningly aggressive case of necrotizing fasciitiis (which is flesh eating bacteria-I return to the notion that we live an absurdly unbelievable life)  This infection nearly killed him last summer.  No one would prescribe such a thing, but in hindsight, there may have been an upside: The giant immune response required for Brent to overcome sepsis seems to have finished off his leukemia. Certainly not what we wanted, but perhaps this was what Brent needed.

Brent lived an incarnation of the phrase "What doesn't kill you makes you stronger"  Trust me, administering a drug like nivolumab would be a far preferable way to achieve this immune response, than dealing with the surgical after-effects of this devastating infection. I support immunotherapy research to help scientists try to understand the mechanisms of the immune system and develop more refined therapies than what Brent has endured.  The immune system may be powerful, but current therapies are bluntly applied, unevenly effective and not deeply understood. CRI helps scientists advance this promising new field.

We will never know for sure, but as I look over the explanations for how Brent has survived these malignancies, science would point to the power of the immune system being a significant factor, although I do not question the power of prayer: a combination therapy.  

Brent gratefully remains in remission.

If you would like to help me support this research, click on the link below.  Many thanks!