Epilogue

Written by Michelle...

"Dear friends and family,

Thank you for your kind words and support since I haven't updated my blog but I have some things to share with you."

That's as far as Rhone got on his last blog update. About a week before he passed away, Daniel (a pastor from our church) came by.  He suggested that Rhone think about updating his blog to share what was on his mind, both as an update on his condition and to talk about his faith.  He recommended an app called Dragon that does voice to text.  We loaded it on the iPad and Rhone gave it a shot (the above), but he was just too tired.  It was hard for him, because this blog was so very important to him and he knew that it was (and will continue to be) a source of information, comfort, and inspiration to all those who read it. So, I will do my best to pick up for him here.

In his last updates, Rhone told you about his two June hospitalizations. In the following weeks, his focus was on two key things. First, to reduce the swelling (or ascities) in his abdomen. Second was to focus on building up his strength. Despite all his best efforts, at the end of July his doctor told him that he was unlikely to be in condition to receive chemotherapy for at least six weeks. At the same time, it was becoming obvious that we needed some additional help at home. His doctor suggested that we enter the hospice program.  Rhone had been very reluctant to even think about hospice in the past. However, with his abdomen swelling, his balance unreliable (with a new, large center of gravity in his mid-section), and his worsening discomfort and difficulty even finding a comfortable place to sleep in our home, it was obvious that we needed some additional resources.  And a hospital bed. With that, Rhone accepted hospice in order to support his objectives of improving his condition and returning to chemotherapy.

Right around the time that hospice started, Rhone was admitted for a day procedure at the University of Washington hospital to have a Pluerx catheter put in. He had gone in previously for outpatient paracentesis to take off fluid, but it took a lot out of him to go in for that and there was a solution where we could have a catheter inserted and be able to do the same type of fluid removal at home. The catheter leaves an external tube to that allows draining of the fluid into a vacuum pressured one liter bottle.  I am sure Rhone would want me to show you a picture and perhaps describe in detail all the steps to complete this procedure. I don't have any pictures, but suffice to say it was a multi step process involving careful focus on keeping the environment sterile and controlling the amount of fluid removed to avoid dangerous drops in blood pressure.  We would take off between 500 milliliters and one liter a few times a week.  On only one occasion did Rhone have a reaction to the draining. That was a feeling of nausea that subsided within about a half-hour after fluid was drained from his abdomen. Fortunately, his nurse had just left and she was in her car making calls when I ran out to get her. Typically, the draining left him with much relief and took fluid down in a visually noticeable amount. So, while it was a palliative treatment, it definitely was a positive for Rhone and made him feel at least somewhat better each time it was done.  Thank goodness for Debra, our hospice nurse, but I am proud to tell you I completed the procedure a few times on my own (with Rhone directing, of course, as he could have done it himself blindfolded!).

Overall, the time between the start of hospice on July 28 and Rhone's passing on August 22 was quite difficult.  He continued to experience more and more fatigue, and was clearly frustrated at his lack of progress. However, it is important to note that whenever he was asked how he was doing, his response was "pretty good." Only one time, and very late in the process, was his answer "not so good."  But it still included the word good!  Which I think is quite remarkable. I will always cherish those days.  Up until the last few days of his life, we would continue to try to get out once a day. The trips became more challenging, and we got stranger and stranger looks at the places we went. However, it was very important to Rhone to continue to live and be out in the world.  He could not have cared less that he was walking around with a walker and  bright white knee-high compression socks on.  He even received a blood transfusion the week before he passed away, in the hopes of improving his energy levels.  He was setting up his Fantasy Football team four days before he died.  I remain in awe of his courage, determination, and positive attitude. His positivity was unrelenting, and made it a joy to be married to him and to care for him.

It is very important to me that this blog have his full journey captured. I hope that you, his faithful readers, will continue to share his story and provide his blog to people dealing with this cancer, or really any cancer.  We have heard stories of people pointing friends to it just for the post on what chemo is really like.  He did such a great job of laying bare the facts and the optimism specific to his case, but made it relatable to all.  He was inspiring in all that he did, and the blog is no exception.  And please remember, he did not "lose" his fight.  He impacted this world in many important ways - then went to a place free of pain and suffering, knowing that he would be in God's grace.  I call that a win.

Rhone did a great job acknowledging those who gave him medical care.  It's worth calling out again.  Dr. Whiting, whose departure to focus on research was an immense loss to the University of Washington system and to countless patients.  All the team at the Seattle Care Alliance, who do their work with such care, focus and compassion.   I believe the three most critical factors in a fight like this are patient attitude, proactive medical care with a willingness to think creatively, and patient advocates who support, search, question and defend.  We tried to ensure Rhone rarely, if ever, attended any appointments alone.  He had a team in his family, who all came together to ensure he got the best care he could.

To those who continue to fight fibrolamellar, and to those who will be diagnosed in the future and come across this blog, I wish you all the best and I hope and pray that we will find a cure for this terrible disease very soon.  In just the past month alone, the world has also lost two amazing young women to this disease.  In honor of Kayte, Liza Blue, Rhone and all those who went before them - we will never stop fighting for you.

Thank you all for your support.

Aloha Rhone, we miss you more than words can say.