HI this is Rich, Nathan's father doing my first post. Many thanks to Melissa for creating this blog and keeping it up. Melissa is under an incredible load right now with school starting for the kids and herself in addition supporting Nathan, so I am trying to fill in. As you will see, I am a poor substitute in the writing department, but here goes.


When Nathan was discharged from Stanford hospital on July 30 we were offered an apartment on the Stanford Hospital site to allow us to finish Nathan's 2 week radiation treatment. It worked out really well with Nathan and Vicki each with a single bed in the one bedroom and Rich sleeping on the floor in the living room. Nathan did point out that it was very strange to live in such close quarters with his parents again. The clear benefit of the on campus location was being able to make 8am appointments for antibiotic and other treatments with no problem. Nathan was eating  pretty well and did not have any significant nausea issues. We managed several outings including a birthday celebration dinner with Nathan's friends from Sacramento and Bay Area, and  visits from aunts and uncles on both sides of the family. Melissa and the kids came back  for a visit  August 5th - 9th. We found a great park for the kids and had a good visit.

Nathan hit one serious setback during this time. His blood levels of the antibiotic vancomycin when up into the danger zone. When this happened several of his labs that had been normal or improving starting moving in a negative direction. His oncologist caught the change and took quick action to stop the vancomycin. Nathan suffered some kidney damage as indicated by his elevated Creatinine levels. This was followed by fluid accumulating in his legs. It is not clear exactly what the cause and effect relationships are in this sequence of events.  Nathan's liver labs started heading back in a positive direction in toward the end of the second week of our stay. We headed back to Chico on on August 10th. 

The goal of this return to Chico was to get Nathan's bilirubin levels down to 5 mg/dL so that he would have a chance of tolerate the standard chemo regime for  cholangiocarcinoma. We had gotten very close to this bilirubin level once while at  Stanford on July 28, just after we started radiation, but before the vancomycin issue. We left Stanford with  a bilirubin level of 8.0 and a down ward  trend. We were optimistic that his home environment would allow  the downward trend to continue. Some of this confidence came  from the  progress Nathan made during his last stay at home after the UCSF drains, but before the Stanford drains. In the  last week before  he was admitted to Stanford his bilirubin level fell from 13.8 to 9.3. and Nathan appeared  to  gain back some  of the weight he had  lost and seemed to have  a higher energy level.  

Unfortunately we did  not have the same outcome this time.  Nathan started showing considerable fatigue after arriving home. His appetite fell off in-spite of Melissa's best efforts to encourage him to eat and drink. On Friday evening August 17. Nathan started vomiting and Melissa took him to the emergency room.  He was admitted to the hospital with dehydration, an elevated white blood cell count, and pneumonia. They provided IV fluids and antibiotics. His white cell count came down quickly, but was replaced with persistent nausea and ascites, the accumulation of fluid in the abdominal cavity. He has had the ascites fluid drained twice, and the plan is to put in a permanent catheter so it can be drained without the pain of a needle insertion each time. Nathan is showing some mental symptoms that are typical of late stage liver cancer. We fist noticed  it in the Stanford outpatient period. Nathan would speak and make hand gestures when he slept. Now he is having hallucinations when he is awake. He is still self aware enough to realize that he is seeing things when you point it out, These symptoms are usually caused by high ammonia levels in the blood, but his ammonia levels are in the normal range since he started taking a medication to address this issue. We are not sure what the cause of the mental symptoms. We are beginning to suspect that the cancer is  spreading.

We are working with a team at Enloe to plan for care for Nathan at home. The tentative plan is to move Nathan to his parents house some time this week. Thanks  to all of you who are praying and thinking positive thoughts for Nathan.