It has been a crazy few months . On February 17 of this year Joe was taken to Princeton hospital with what we thought was a stroke, then meningitis, only to find out 12 days later, that it was cancer. Melanoma that was found in his central nervous system, resulting in leptomeningeal disease. A rare and deadly form of cancer. This was our worst fear. He endured countless tests, pokes and prods, but was resilient and fierce in his battle to get better. On March 2 he was transferred to Penn. He challenged the doctors and nurses, in his constant efforts to get home. On March 8, we achieved that goal, and home we went.
Despite some weakness, we got out every day, for our lunch dates and occasionally some shopping. On March 14 he had his first round of immunotherapy. We decided to go the more aggressive route and do two simultaneously. He was doing great until March 25, when he had another seizure. These seizures are like no others, and the effects are long lasting and debilitating. We were transferred from the ER to Penn. This was a quick hospital stay of only 5 days. On March 30 we headed home, but I must say, I had to battle, curse, and fight our way out of there.
Since then we have had two more immunotherapy treatments, which occur every three weeks, as well as two visit to Sloan Kettering to discuss trial options. The cancer started to take a toll on Joe, he was becoming weaker and weaker, losing focus and the ability to get out for our daily lunches. Now our meals were bedside. We persevered and made the best out of each day, some days were better than others, but we got up each morning ready to start the day.
On Mother’s Day morning I woke up to find Joe having yet another seizure. He spent one week at Princeton Hospital before being transferred to rehab. It was our hope that we could get him strong enough to return home and continue his treatment. Unfortunately this was not the case. After two weeks in rehab our insurance denied further therapy. We had to make the hard decision to place him in long term care where he can receive medical care 24 hours a day. Like most facilities this option is self pay. We are lucky that he stayed where he was, same room and everything. The staff love him and treat him well.
Joe has grown weaker each day. Even though he isn’t talking he lights up when he sees friends and family. The kids always get him to smile! We are blessed to know that he isn’t in any pain and seems content throughout the day.
Four months ago, Joe was a picture of health, we had no idea this beast was brewing and ready to rear its ugly head. I have learned a lot these past four months. I have discovered what a wonderful community we have, amazing friendships that support me at my worst, family that has never let me down, and a love for Joe and the kids that is like no other. I have also discovered to take each day as they come, and look for the beauty in these darkest hours.
We continue to fight alongside Joe, helping him to stay strong and find joy in the little things. We continue to pray but we are prepared for what may lie ahead. We are Kochberg Strong!!!