Battling Cancer & Racial Care Gap

Dear Family & Friends,

In June 2014, at 35 years old, my dear friend Manuel Bonilla (AKA Manny) discovered he had a stage 4 cancerous tumor growing in his right jaw.  At this stage, cancerous cells are able to travel the body via blood vessels, which enables them to spread to any body part, making stage 4 (Stages range from 1-4 or 0-4) the most severe stage for a person's body to be in.  As a result, doctors immediately rushed Manny to surgery two weeks after his diagnosis and put him on a 7-week chemo and radiation treatment plan.   A guy I know to be so active as a retired gymnast and dedicated coach, I was in complete shock when I heard about Manny's health! All I could think about were two things: 
1) His wife, Kathy, and two beautiful kids, Ohanis and Aylanie...and
2) How the hell did his doctors not catch this earlier?!!

For an entire year, Manny had complained to doctors about pain he was experiencing in his right Temporomandibular Joint (TMJ).  He mentioned this to his dentist and health care practitioner only to receive feedback that was dismissal of his health claims.  During one of his complaints, Manny mentioned he felt something in his jaw and that each time he pressed down on it, he felt pain.  The doctor's response: "Stop pressing on it".  Manny's pain was so severe that he couldn't even sleep on his right side and developed facial paralysis on the right side of the face. This went on for a year until Manny advocated for himself and demanded the neurologist, who didn't believe anything was seriously wrong, do an MRI to assess his health concerns.  Manny's gut was right. The MRI revealed he had stage 4 Cancer.  The Cancer had grown and gulfed the facial nerve and had spread to the Lymph nodes on the right side of the face and neck.

Since his diagnosis, Manny's health has spiraled downward. In January of 2015, he had cancerous polyps in his Colon removed and in May 2015, a routine pet scan revealed numerous small nodules in both his lungs.  Although Manny had a history battling cancer, doctors did not believe the nodules were anything to worry about because of its size even when it grew three months later.  By August, they decided to conduct genetic testing to see if he carried cancerous gene cells.  It was not until December when the tumor grew by 30% that his doctors became concerned and the results of the genetic testing came in revealing that Manny, in fact, carried the gene for cancer.  Manny began chemo and radiation therapy; however, this was not the best treatment for someone carrying cancer genes.  Therefore, Manny's Doctor referred him to Dr. Ho in New York City who had been working on a clinical trial for patients who are gene carriers.   In February 2016, Manny began the application process to participate in the clinical trial.    After waiting several months for doctors to research his health records and history to determine eligibility, Manny was accepted to participate in the clinical trial.  In June 2016 Manny began his new treatment after giving his chemo some time to flush out of his system.  Manny's new treatment involves taking a new pill called AMD 232 that is suppose to target genetic cancer cells and traveling three days a week with his wife, Kathy, to New York City for intense monitoring and screening before, during, and after treatment.  

As of today the trial drug administered at Memorial Sloan has failed to show promise in Manny.  Therefore, the treatment was quickly terminated seeing the harsh side effects outweighed the positive effects the doctors had hoped to see.  Currently, Manny is back at Smillow undergoing a systemic treatment of strong doses of chemo therapy.  Manny’s Oncologist hopes that the mix of chemo drugs being given will at least slow progression of the Metastic salivary gland cancer that has spread to his lungs, and liver.  
 
As I sit here rereading the series of events that have impacted Manny's health, I cannot help but get angry! I am upset at the dismissive attitude his doctors expressed early on when he first noticed his body was not behaving normally! I am reminded of the stories my mother, who worked as an E.R. nurse for more than fourteen years, would share with me of doctors and nurses making side remarks that Black and Latino patients are dramtic and often overstate thier symptoms. And although I am fully aware these stories are anecdotal, I am also not ignorant of the countless studies like those conducted by Dr. Derald Wing Sue  that acknowledge the existance of racial biases that play out in the form of racial microaggressions in professional practices, which have shown to negatively impact clients of color. In fact, this past April a new study  revealed that Black patients are often treated differently when it comes to medicine and care. "The survey of more than 500 people, 400 of them medical students, found implicit bias exists that may help explain why black people are sometimes undertreated for pain."

I am in no way a medical expert, but as a social justice educator I am all too familiar with the lack of urgency some professionls express when they are working with Black and Brown bodies. This is not news to many of us, but for those who have been living in a post-racial mindset, this sleepy-eyed awakening is shocking and horrifying. So, YES, I'm going THERE, because my social-political consciousness cannot help but wonder how much race played a role in the mistreatment of my friend's health condition? 

So, what is our goal?
As a friend who felt helpless for a while, I have finally woken up and reminded myself of all the ways in which we can each help Manny and his family big or small. Although I will continue to encourage Kathy and Manny to persue legal action against what I beleive is medical malpractice, I respect they are not emotionally in a place to do so right now. In the meantime, and at minimum, I want to be able to help him and his family create the environment that will keep him inspired and motivated to beat cancer to its death and to one day, soon, seek justice against the racial care gap that continues to plague Black and Brown communities.

Since I've known Manny, he has always worked hard putting in extra hours as a girl's gymnastics coach and working on small house projects for his family and friends.  The man never sits!  In fact, a few years ago he and his family moved back from Nebraska to Waterbury, Connecticut and purchased a 2-bedroom, 1 bath fixer upper with the intentions to put his carpentry skills into practice.  Prior to getting sick and even during his illness, Manny continued to work on house projects determined to give his family the house they always dreamnt of.   Since the progression of his illness, Manny is no longer able to sustain the physical stamina to complete his master bedroom project and has had to leave his full-time coaching job.  With an unfinished bedroom and no bathroom on the second floor for him to easliy access, Manny and his wife do not have a healthy (dust free), serene space to connect and decompress the worries and stress they have been experiencing since Manny's diagnosis.  With the heavy financial burden cancer brings on top of being out of work, I know finishing thier bedroom is not a priority on their list.  My goal is to help Manny and Kathy raise enough money to finish their unfinished bedroom and bathroom. 

How can you help or get involved?
So, below is an estimated breakdown of  how much money is needed for materials.  If you have a service or product you would like to donate rather than give monetarily, please contact me via this page.  If you or someone you know is an attorney interested in Manny's medical case and is willing to offer pro-bono services, this would also be greatly appreciated!!  We all have the power to impact Manny and others in ways that don't always require the need to reach into our pockets and it starts by simply sharing his story with your networks.

Bedroom
flooring= $400
paint= $100
closet cabinets= $600

Bathroom
lumber= $450
plumbing= $400
electrical= $150
tiles= $250
paint=$100
toilet=$200
shower= $400
cabinetry=$350
trim & (2) doors= $400
fan & light= $200
bath fixtures= $200 
sink= (My husband and I will be donating a new sink.)

Cost for contracting work & other miscellaneous costs= $8,400
Grand Total= $12,600

What is our timeline?
We would love to be able to get the bedroom and bathroom complete by early fall.  As we continue to build funds, we will update all doners on the progress of this project including what their funds were spent on and before and after pictures.

PLEASE don't forget to SHARE this campaign!
Any support you can provide would be greatly appreciated! Manny and Kathy are very modest and would never dare ask anyone for this help, which is why I am stepping in as their friend to ask for what they need right now.  I, alone, would never be able to help them complete this project but I strongly believe that if we come together as a community, we can make this and MORE happen for Manny and his family!

Please share this campaign with your contacts, and thanks in advance for your support!!

With much love and gratitude,
Chemay Morales-James