The camino of #JaimeStrong - A journey in lung cancer

For those of you who know me, you have seen me post and share stories about my dad. (here when he had his stroke) Diagnosed almost five years ago of Stage IV NSCLC, my family has learned so much about this cancer and are active members of the community helping to raise awareness. Every year I have worked on creating a t-shirt design representing an activity that my dad loves to do to help raise money for drug research. In four years we've raised over 20k for LUNGevity! In its fifth year and fifth shirt, I was taken back by an email my mom sent out about my dad. It moved me. Her love for her family and dedication as a caregiver just shines in words. I was going to write my own, but when I read hers, I was like, this is it, no need to battle with perfection.

"The journey of a thousand miles begins with one step" (Lao Tzu)

Jaime's cancer journey began in late?2016 when a misstep during a run landed him at a Patient First clinic for a quick x-ray.?Three painful broken ribs and what seemed like a non worrisome lung nodule sent him to visit a pulmonologist to rule 'things' out.?A strong and healthy nonsmoker who biked?80 miles on the regular, Jaime nor his doctor thought anything of this solitary nodule.?Unfortunately, the first CT scan showed not one, but multiple nodules. 'Dr Google' told me that multiple lung nodules almost always meant cancer but I was told not to seek advice from this often unreliable 'doctor' so I listened and didn't pursue my research further. Instead, I was hopeful, not knowing anything about cancer, that such a strong man who never smoked, was the poster boy for Type 1 Diabetes, and had such a positive outlook on life could possibly have this horrible disease.Several months of tests (pet scans, two biopsies, biomarkers and a slew of others) revealed our?worst nightmare. Jaime had stage IV metastatic lung cancer.?Non-Small Cell Lung Cancer (NSCLC)?with an ALK Positive mutation?to be specific.??

Lung Cancer?affects around 200k people each year?and NSCLC is responsible for about 85% of them. It does not discriminate, yet each year younger and younger men and women are affected. Each year the numbers grow, the demographics expand and we are devastated. We don't know where to put the blame or how to avoid it.?It's no longer the smoker's cancer so is it the environment? genetics? nutrition??There are as many theories as there are patients.?What we do know is that it can strike anyone at any time, and by the time you have symptoms you are usually at stage IV.?Jaime had no symptoms, in fact if he hadn't tripped that fateful day he never would have seeked medical attention.?That's how most people discover they have lung cancer - an unrelated?issue that?lands them at the ER or hospital.?It sucks!

What did NOT suck was that within the NSCLC family there are many mutations - around 200 of?them. Unfortunately not?all of them have an identified?drug and traditional chemo is the only treatment.?Immunotherapy is not eligible for all mutations so the options are limited.?Jaime had a mutation called ALK positive (https://www.alkpositive.org/what-is-alk).?This mutation is seen in about 5% of all lung cancer patients and 30% of patients under age 40. Jaime was lucky because ALK positive is one of those mutations with multiple TKI (Targeted therapy).?On March?5, 2017 he started off on Alectinib, a target drug that also penetrated the brain barrier to attack the cancer in his brain.?Within three months the nodules had shrunk and the brain lesions had disappeared. He has been on this same drug for 4 1/2 years with excellent results.?The side effects can be crippling at times but they have given Jaime a second chance at life.?

The bad news in all of this is that although lung cancer is the leading cause of cancer deaths it has the lowest cancer funding.?Thanks to organizations like LUNGevity foundation (https://www.lungevity.org/) that is continuously doing research to find more treatments, conduct clinical trials, and give support to patients and families and friends; we can breathe a little better each day and people like Jaime can have one more day!

When we started this journey we didn't know what to take with us, what direction to go, what to expect, and how challenging the roads would be. Jaime had a stroke in 2018 and bladder cancer in 2019 but he overcame each one of these obstacles miraculously.?Early in this journey, we found?Dr Stephen V. Liu,?a remarkable?and brilliant Lung Oncologist?at Georgetown Medstar.??From day one he has guided us with compassion, patience and dedication. He always has a plan B for if and when the drug stops working.?We cannot imagine this journey without him.?I don't know if this is a one thousand mile journey, but we continue it with YOU, and thank YOU for making?a difference in finding more treatments that will extend Jaime's life beyond the statistics.

This year we present our 5th T-shirt for NSCLC research. Every dollar benefits LUNGevity Foundation for further research and clinical?trials.?We have raised over $20,000 in the past four years!??

Help us on our?Camino de Jaimestrong?to continue the research and buy a T-shirt or make a donation?this year!

-Lourdes Posada

For those who don't know my dad, this was taken on Sunday for his 62nd birthday with his 7th month old grandson Harrison (isn't he a cutie!)

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