Saturday, April 4, 2015

I often write about Brandon and his journey with cancer, and I often describe my journey since his death. However, I rarely post about the foundation my husband and I established in his name immediately after his death. Because we wanted no other families to know the grief we felt, the mission of Brandon's Foundation is to raise awareness about head and neck cancer but also to act by raising funds for the innovative research that can lead to better treatments and cures. I posted the following to his Foundation's blog yesterday. It seems appropriate to repeat it here. And if you're able, please donate to fund research, but in any case please share this with others so that more are screened for head and neck cancer. Thank you!


Five years ago - April 2010 - I'd never heard of Head & Neck Cancer Awareness Month, although our family had recently become acquainted with head and neck cancer. Only a few weeks earlier Brandon called with news that brought me, his mother, to my knees. I vividly remember where I was and what I was doing as he explained that one of the several nasal polyps he'd had removed a few days before had shown "poorly differentiated - or undifferentiated - squamous cell cancer" in his right maxillary sinus. One moment I was standing, the next I was not. My knees and my mind had buckled. But hey, how bad could this be? Surely, it was treatable. Cancer treatment had come so far.

The pathology findings from the examination of the nasal polyps were discussed by the University of Cincinnati Cancer Institute's tumor board. Surgery, a maxillectomy, was scheduled for later in March, and the head and neck surgeon told Brandon they would do what was needed to remove the cancer, which could include the creation of cleft palate, the removal of his right eye, or removal part of his jaw and/or nose. The cancer was found on a single turbinate bone at the nasal area of the sinus and that bone was removed. The mucus membrane was stripped from the right maxillary sinus and sent to Pathology for microscopic examination. No other evidence of disease was discovered. We all breathed deep sighs of relief. Head and Neck Cancer Awareness Month came and went without our realization that April was designated as such.

Then during an early August follow-up appointment, a resident palpated enlarged lymph nodes on the left side of Brandon's neck and found a "spot" at the back of his throat. A biopsy showed more of the same poorly differentiated, HPV-negative squamous cell cancer (SCC). A PET (positron emission tomography) scan found no other "hot spots" below the neck, so everyone felt positive as he dove into the whirlwind of port (port-a-cath) insertion for chemotherapy, fitting for his specially molded radiation mask, and the two months of the common brutal treatment for most head and neck cancers -pinpointed radiation 5 days a week for 7 to 8 consecutive weeks combined with chemotherapy every 2 to 3 weeks. (The blog photo of a smiling Brandon was taken at the end of the chemo-radiation combo. His port is visible just below is right collarbone and the radiation burns are obvious.)  Radiation resulted in burns outside and in, affected and thickened mucus production, caused his sense of taste to change. Chemotherapy damaged his hearing, produced strange tastes in his mouth, upset his digestive system in all ways imaginable. He chose to wait and see if he'd need a percutaneous endoscopic gastrostomy (PEG) feeding tube, which many, if not most, on the treatment journey for head and neck cancer now receive prior to treatment. None of us know how he continued to eat and drink throughout treatment, but he did, and he never shared how difficult it must have been. 
Brandon smiles in spite of radiation burns after several weeks of treatment.
(His port is visible under his skin, below his right collarbone.)
The post-treatment PET scan revealed new "hot spots" on a rib and his femur. He learned he was to become a father while undergoing radiation treatment for the new spots. The afternoon of his last radiation treatment, he hopped a jet to Paris to meet his wife, who was already there for business, for a long Easter weekend in the city of love and lights. They made the most of every moment. They welcomed daughter Morgan on December 3, 2011. Meanwhile, Brandon fought more and more "hot spots." Different forms of traditional and trial chemotherapy agents were tried. Each caused new and more uncomfortable side effects. None made an impact. He was fitted for a new radiation mask when "spots" appeared in his brain. The disease continued to march through his body, quickly overwhelming body systems. He died June 2, 2012. His father and I founded Brandon's Foundation the next day.

Head and neck cancer receives very little attention compared to many others. It is thought to be an old person's disease related to a lifetime of tobacco or alcohol use. However, the number of people affected by some form of head and neck cancer is growing and this growth is mainly among younger adults. Part of it is related to the same forms of HPV that cause most cervical cancer, but HPV does not account for many other cases. It is estimated that almost 46,000 will be diagnosed with some form of head and neck cancer during 2015 alone - that is about 125 persons each day being told they have this cancer. It's anticipated that more than 8600 of those journeying with head and neck in this country will die this year. 

Don't forget your own screening for head and neck cancer, as early detection can make the difference. Be sure a thorough head and neck cancer screening is part of every dental check up. If you're in the Cincinnati area, call (513) 475-8400 to reserve a spot for a free screening by the University of Cincinnati Health Otolaryngology – Head & Neck Surgery at the Barrett Cancer Center Area F from 8:30 a.m. – 4 p.m. on April 16. Last year the team performed approximately 230 screenings of which 17 required referred for follow up. 
Screening and early detection are only one part of the head and neck cancer picture. it is time to change the survival statistics and it is time for treatments that have fewer debilitating side effects. Only research can find the treatments and cures that will allow other families to never know the kind of loss we feel without Brandon in our lives. His Foundation's Request for Proposals was sent to researchers in February and many proposal submissions arrived by the March 27 deadline. Next week we begin sending these proposals out for "blind" reviewers by experts in the field of head and neck cancer. An announcement of the 2015 grant awards is to be made June 2, 2015 - the third anniversary of the date of Brandon's death.

PLEASE help us fund the research that will put an end to head and neck cancer. DONATE now so Brandon's Foundation may expand the number and amount of grant funding available for promising research projects. And the next time you sit down for a meal - the next time you enjoy the aromas and flavors of your food, the next time your mouth is moist enough and your throat is undamaged so that you don't have to even think about swallowing and easily passing food from your mouth down your throat to your stomach - think about Brandon and all those who are or have been on the head and neck cancer journey with him.

2 comments:

  1. It's a long time since you wrote last. I hope your pain has become more bearable and I wish that the light from your son's life continues to shine for you and your family.

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  2. I read your comment awhile ago and meant to respond. I truly appreciate your concern. I've started many additional blog posts but have not yet finished them. I can't explain it. After Brandon's death, I wrote but I couldn't concentrate well when I wanted to read. Then it was as if the tables turned. I was reading like mad but couldn't concentrate to write. I'm hoping the two come together soon. I can't say the pain is more bearable now, but I can say Brandon's light shines as bright or brighter than ever. Thank you.

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