My beautiful Ginger kid was diagnosed with melanoma the first time in Feb, 2012. 4 months later, after 2 surgeries and 100s of stitches, he was declared “cancer free”. This was his senior year of high school. He was working about 25 hours a week and going to school full time. He was looking forward to a Halloween trip to NYC. He was a normal kid going to college and doing normal kid college things.
Connor was born with a congenital naevi on his left side scalp. It was small – about half the size of my pinky finger nail. About 1 child in every 100 is born with a naevi so this is not uncommon. The risk of the naevi becoming malignant melanoma in a child born with this type of naevi is less than 1%. Typically, if it is going to become melanoma, it happens during puberty. Connor visited a dermatologist AT LEAST once per year and during his preteen years – it was several times a year. Beginning at birth, and over the years, I asked about this spot. I asked numerous times about removal. Each time I was told, we don’t normally remove them, we just track them and if there’s a change we address it.
Connor had other risk factors, however. Very very fair skin, red hair, blue eyes, male, and at a very young age he began having skin abnormalities that were tracked by a dermatologist and many were removed. Some biopsies came back with abnormal cells, some did not.
As Connor grew, the spot on the side of his scalp grew also. In his early teen years the spot began to change colors. It was biopsied several times and always came back normal.
In February, 2012, Connor was getting his hair cut by his regular hair stylist. He saw her about every 3 months so she was quite familiar with his hair and scalp. On this particular visit, his hairstylist mentioned that the spot on the side of his head looked different and had grown. We were so alarmed that that afternoon we visited our dermatologist. Our local dermatologist took one look and said he didn’t even want to biopsy it; it just needed to be removed quickly. But because of the location is was complicated. The next week we established Connor as a patient at the melanoma clinic at Stanford. It was clear by their visual reactions that they knew Connor had melanoma. Within the week, we had it removed and lymph nodes biopsied. It was a complicated removal because of size and location and we knew we would have to be back for cosmetic repair after the initial surgery. Fortunately, the biopsy showed that Connor was clear in the margins and lymph nodes – so no additional treatment was needed. But certainly follow up appointments with oncology were imperative. We had completed 1 or 2 cosmetic repair surgeries and had planned the last one for a couple of years out.
Connor graduated from high school in June, 2012 and began college the following fall. He was a full time student and beginning May 2013 was also employed full time. It was during the summer of 2013 that we began to notice that Connor was tired more frequently, but attributed this to his work and school schedule. He showed no signs of sickness. He visited his regular family doctor for a check up in September, 2013. We discussed his fatigue, but all of his labs came back perfectly normal.
The 3rd week of October, Connor saw 2 black spots that formed on his skin – one on his eyelid and one on his forearm. When we look back at this time – in reviewing photos that he had posted on face book the 2nd week of October – there were no black spots – so this literally happened overnight. We made a doc appt for November 7. Still, Connor was working and going to school full time. On October 31 our family gathered in NYC for a family weekend vacation. At dinner on November 1, Connor let me know that he felt awful – he said his entire body hurt and he was incredibly nauseated. The next day was spent in the emergency room in NYC. It was during a routine CT scan that we discovered numerous nonresectable tumors in multiple organs – liver, kidneys, adrenal glands, lungs, stomach; they were throughout his entire body.
We flew home and went directly from airport to the emergency room at Stanford where Connor was immediately admitted. Additional CT Scans and MRIs showed tumors in his bones and every organ in his body except for his lungs and brain.
Connor had one round of IL-2 chemo, but when testing came back and showed that Connor was BRAF positive, he qualified for one of the newest medications – that was having a very high success rate. We immediately switched to this medication combo (Tafinlar & Mekenist). Five weeks into the treatment, on December 16, we had our first scan and discovered that the combo drug was showing great results. Some of his bone tumors had disappeared completely and many of the other tumors had reduced in size. We believed we were heading for a recovery.
However, Connor never seemed to feel well at all during this time. He continued to need pain meds and he continued to sleep a lot – 18 to 20 hours a day. This was attributed to the pain medications he was on because they were so substantial. Just after Christmas Connor had a seizure episode which took us back to the hospital. It was then that we discovered that while his meds were effective throughout his body, they were not effective in crossing the brain barrier and protecting his brain. He had numerous “too many to count” tumors throughout his brain. On December 30, we were told that the next step would be whole brain radiation and were preparing to start that on January 2, 2014.
December 31st, New Years Eve, was a good day. We had a room full of friends and Connor, while sometimes disoriented, laughed and joked and was himself. It was the last good day. You never know something is the last until it is.
On January 1, 2014, Connor woke up and I could tell that something was very very different. He could not verbalize very well. He could not articulate names of people though clearly he recognized them. He said Mom. We walked around his hospital floor. We looked at the view of The Golden Gate Bridge. He cried. He said Mom. Then he had a seizure and after 3 hours we were finally able to stabilize him with medications.
I was told at 2 pm on January 1, 2014 that there was no hope. There was no more treatment to be done. His tumors had spread too far. I had to make a decision that no person, no parent, should ever have to make. We stopped treatment and began the saddest time of our lives. He never oped his eyes again.
One person dies from this devastating disease every hour of every day. My beautiful son, my only child, my Ginger kid, died in the hour between 2 am and 3 am on January 9, 2014. He was 20 years old.