Topic: Introductions - our first post
Dear CC Family,
We are new and while we are very sad to join this family, we are also overwhelmed by the encouraging support shared within the group and the amazing amount of information concerning treatment options. This is our first post and I’m not really sure where to start.
Our son, Jeff, was diagnosed with CC on 8/11/12. Jeff is developmentally disabled (although he is very high functioning) and lives at home with us (Mom & Dad). He is 36 years old, works full time and is very involved with Special Olympics.
Our CC saga started when Jeff developed jaundice rather quickly and blood work showed his liver functions were off the chart. Within the week he had an ultrasound and CT Scan that showed a mass in his liver and a blockage in his bile duct. He had an ERCP with a stint placement in the common bile duct which relieved the jaundice. He also had an MRI which confirmed the diagnosis.
We were referred to a liver surgeon (Dr. Busuttil) and oncologist (Dr. Sadeghi) at UCLA. His liver biopsy confirmed CC. We were getting ready for liver surgery when the oncologist ordered a CT Scan of the lungs/chest which showed a surprise mass in the lung. We then went through another round of tests which ended with a biopsy of the lung mass. This confirmed that the tumors were related. While it remains difficult for the doctors to know with absolute certainty where the genesis is, the prevailing opinion and diagnosis remains CC. Essentially, this is where we are at the present time.
Our oncologist is making another pitch to the surgeons (TODAY) for the possibility of surgery as a viable treatment option. Unfortunately now, with another mass in the lungs, Jeff’s condition is now a lot more complicated. Surgery, if it even is a viable option, will now involve a thoracic surgeon for the lung mass and a liver surgeon for the mass in the liver. The odds are against surgery as an option, but we are waiting to find out for sure where we stand. We are preparing ourselves for a firm “NO” with respect to the surgical option. We anticipate that chemo will begin this week or the beginning of next week. I don’t know or remember the names of the drugs.
Over the years, Jeff has had more than his share of medical issues and challenges and has overcome them or found ways to compensate for them while maintaining his happy, sunny, never-complaining and stoic disposition. (If attitude alone could cure, Jeff’s tumors would be gone.) I can’t count the times where doctors or nurses have told Jeff “I wish all my patients were like you, Jeff”.
Faith has always been important to our family and we continue to pray for a miracle. Please join us in praying for my son.
Please share your experiences with us. We know the road ahead is going to be a bumpy one. Any advice, words of wisdom or insight as to what lies ahead will be deeply appreciated.
Bob & Nancy (Jeff’s Mom & Dad)