James Smith - Battling Melanoma and Sepsis

My father was diagnosed with melanoma metastatic to his brain and lung back in October 2018. The diagnosis included four tumors in total, three in his brain and one in his lung. The genesis of this discovery stemmed from a seizure and subsequent fall that led to a hospital visit. Following imaging, it was determined that the seizure was caused by one of the three tumors in his brain. This particular tumor  was close enough to the skull that it was able to be surgically removed. The other tumors were too deep to remove and thus it was decided that they would be treated using a combination of targeted radiation and immunotherapy.

My father began targeted radiation therapy in early November with cyber knife technology. Cyber knife technology utilizes concentrated radiation beams to literally fry tumors. The treatment went well, but not without mild to significant side effects on my father's cognitive ability. He now struggles to process simple ideas and engage with people. Despite this setback, we consider this to be a relatively minor side effect compared to the troubles we have had with the immunotherapy treatment. 

Immunotherapy utilizes drugs that rev up the immune system while also bringing its attention to melanoma cells. The problem is, immunotherapy (like traditional chemotherapy) does not discriminate between good cells and cancer cells. Although immunotherapy has been around for over a decade, the results have been mixed. Some patients experience cancer remission while others witness no effect at all and even terrible side effects.

My father's first immunotherapy session followed his radiation therapy. For the first three weeks his primary side effect was only extreme fatigue. At this point I sought a second opinion from Memorial Sloan Kettering (MSK) in NYC just to be sure that we were going down the right path. MSK confirmed the treatment plan and we decided to keep going. The second infusion was the day after Thanksgiving and the side effects quickly escalated after this treatment. He began experiencing severe pain in his gut and after steroids failed to curb the inflammation we found ourselves back in the hospital due to a perforated colon.

The perforated colon led to an emergency ileostomy.  An ileostomy procedure basically removes the large intestine then pulls the small intestine through the abdominal wall so that the end of the small intestine (and digestive tract) protrudes through the side of the stomach. The total number of individuals in the US that have had an ileostomy has never really been accurately quantified but estimates seem to point to about a million people with 100,000 new cases each year. Needless to say, this is a pretty rare surgical procedure and one that I have come to realize has extremely low social awareness.

The hospital stay following my father's ileostomy surgery proved to be the most tumultuous and scariest time that my family has ever faced.  For over a month and a half my father fought through complication after complication. He developed multiple blood clots in his legs and arms as well as at least one pulmonary embolism that entered his lung. His vital signs went haywire on multiple occasions with low blood pressure, high heart rate, and high body temperatures. He also developed three bacterial abscesses in his gut, infections stemming from the removal of his colon while it was leaking stool into his abdomen before and during surgery. These infections threw my father into a state of septic shock. All of these post-surgical complications seemed to create the perfect storm, a situation in which my father's prospects looked extremely bleak. To me the situation felt similar to watching a football team try to come back from 16 points down in under two minutes with no timeouts left. The best one could hope for is 2 touchdowns, 2 two-point conversions and 2 successful onside kick attempts to simply TIE the game. Similar to this situation, all we could hope for was another day of life for my father, a win was (and still is) close to impossible.  

After my family spent the holidays in the intensive care unit of the hospital, my father was finally released to home health care. His total time being inpatient was about a month and a half. He is currently undergoing significant physical therapy, combating severe malnutrition, and taking the prayers of friends and family to gain enough strength so he can begin to fight the melanoma again.

I am creating this funding page to help my father defray the costs of his healthcare over the next few years. Fortunately, my mother is still employed and has a high deductible health plan that covers him. His current out of pocket maximum under this healthcare plan is $5,300 per year plus numerous medical supplies not covered by insurance. Another added stress is that fact that my mother is getting older (she is 64) and at some point she may not be able to work. If my mother were to retire or become disabled, my father would have to move to Medicare Part B and potentially be on the hook for 20% of his healthcare costs going forward. In 2018 alone, total billings to our insurance were $700,000. Of that gross amount, insurance negotiated total payment of $400,000, and we paid $5,300 of that. We are lucky to have private insurance, but many who are under Medicare Part B could owe as much as $140,000 in out of pocket costs under this same scenario.

My hope is that I can raise this money to bring some peace of mind to my family and my father regarding finances. Should my father's time in this world come to an end quicker than we would like, I will donate all remaining proceeds to United Ostomy Associations of America and the Melanoma Research Foundation (proceeds to be split 50/50 between the two organizations). While my father continues to fight, all proceeds will be applied to out of pocket medical costs including co-payments, deductibles, co-insurance and any medical services and supplies not covered by insurance. Thank you for taking the time to read this and at least become more aware of those who are living with melanoma and an ileostomy. 

Celebrating Christmas Day 2018 in the hospital.

My father enjoying his first McDonalds after weeks of receiving nutrition solely from a feeding tube.

I post this so that others can be aware of the severity of these types of procedures. The two white tube drains to the left represent the abscess infection drains from the gut. The middle wound is the location where the colon was surgically removed. The red protrusion to the right is the small intestine (also known as the stoma) where my father now places his ostomy bag.

My father trying to sit outside with the family. He still struggles from extremely low hemoglobin counts post-surgery and given his comorbidity, it is unclear whether these will ever return to normal levels. Even after two blood transfusions, his body still has trouble producing this protein which leads to extreme fatigue and a constant feeling of being cold (among many other issues).

My father making his first appearance outdoors in nearly two months. Just prior to this picture he had walked over 500 feet using his walker.

My father in his current stage, comfortable in his home hospital bed, trying to heal and gain strength so we can get back to fighting and beating the melanoma.