Ongoing Care For Johnny - Cholangiocarcinoma

In May, 2017 things looked good for us. Johnny was retiring after 32 1/2 years of employment at Social Security where he had helped so many with their questions, concerns and bereavement benefit questions. When retiring he had to decide a few major decisions every Federal employee makes. One was how to leave his pension should anything happen to him. Anticipating many years of retirement he had me waive my right to it and instead I would receive BCBS insurance for life. But he would draw his pension for many years so we  didn’t worry. Secondly he had to decide how much to draw out of his 401k. He drew out enough to replace his twenty year old car, repairs like our roof and some to travel.
Sadly 6 months later he was diagnosed with Cholangiocarcinoma on Nov 30, 2017. He was immediately scheduled for surgery. Resection of the liver was in January 9, 2018. It went well. Because only 5% of Cholangiocarcinoma patients are caught in time for surgery it seemed miraculous. There are on average  1 out of 100,000 cases in the US. The recovery was long and he started adjuvant chemotherapy but developed jaundice. In July he was resuscitated from Septic Shock. Five days later he was discharged. UAB found no evidence of cancer and treatment stopped.  We made plans to go to MD Anderson just in case. Reoccurrence was found on Nov 20 and on Dec 18 we met with the eminent Dr Javle an expert in cc. Johnny tried so many harsh treatments. Sadly this meant depleting our funds to go to Houston and 15% out of pocket with his policy. All the money he took out was used and still we managed by being thrifty. Johnny became suddenly worse and was hospitalized a few weeks ago. I’ve tried to care for him at home with both home health and hospice. He has such painful metastasis to the spine that moving him causes him immense suffering,so my hope is to get him better care and utilize St Martin’s with trained staff in Birmingham. Blue Cross will pay most but not near all.  He has fought so valiantly. He will not get to draw Medicare because he would qualify in May of next year. I’ll have to give 10% of his 401k because he will not live to 60. If you wish to help with his ongoing care please consider donating. Any funds not used for his care or funeral will be donated to The Cholangiocarcinoma Foundation. It’s hard to ask but he simply needs a higher level of care and a person highly skilled with bone metastasis movement. Johnny weighs 122 so he is both a fall risk and fracture. Your gift will be deeply appreciated.  As his husband I believe fervently in the funding of research for this cancer so the remnants will go to The Foundation. Thank you so much.  This cancer is so harsh and rare no doctor in Alabama had expertise. Johnny was so close to being a success story. Pray for us.