Meeting at the Hospital with Staff, Family and Church

We had a meeting this morning with mom's "Palliative Care Team" which was some of mom's hospital staff, a social worker (Judy), a doctor, two Chaplains from the hospital, Mike Gwinn from First Baptist Woodstock (our home church) and the family. There were 16 people crammed into mom's room and the doctor told us that this was definitely a record number of people in the room.

Dad opened the meeting with prayer for everyone, praised God for our many blessings and asked the Lord to lead us in the discussion today.

One of the staff explained Palliative Care and opened the floor for discussion, starting with mom and asking her for what she is feeling and thinking about. She stated that she doesn't like being the center of attention and this kind of discussion makes her uncomfortable.

The question was asked about how she has felt since she has been back from Mexico. She stated that she has been in pain and that everybody wants to help her but she doesn't like people focused on her.

I brought up the fact that they have been very frustrated with getting the medical treatment they want and need in America after receiving superior treatment in Mexico at the Sanoviv Medical Institute.

Dad shared the full story of Sanoviv and mom's miraculous recovery while there which was very educational and very inspiring. Then he shared the treatment plan that he received from Sanoviv including the chemo protocol to take to her treating physician in Atlanta and how they have not been able to find one that would work with them here yet.

He shared how they went to Emory and how discouraging it was when the lead OB/GYN oncologist (Dr. Horowitz) at Emory didn't even read the protocol, told them they couldn't do anything, was dismissive and insulting as he told them that you "can't put any hope" in that type of treatment (which you could tell he hadn't read since it was a chemo treatment regimen from California - do you really think he didn't believe in chemo?).

Dad then shared his frustration with the Kaiser Permanente system trying to follow up with them to get the treatment they know they need and have mapped out, not another opinion!

He shared how finally by going through Customer Service and telling them that they do not want another opinion they want their treatment that they believe in outsourced.

The physician that was there from the Palliative treatment team interrupted nicely to defend the doctors in Atlanta and explain the way that things work in America. Thanks for that.

Dad shared that more than anything his frustration has been with doctors telling them that there is nothing else you can do when their only option is more chemo when that is not the only option. At the very least there could be help in treating her immune system and helping her feel better and improving her quality of life.

Judy, the social worker asked many clarifying questions and brought up the fact that many doctors might be afraid of doing harm since their first job is "to do no harm" and when they are not aware of some kind of treatment they might be afraid of "doing harm."

I shared a little more about the other treatments she was getting at Sanoviv that hadn't been discussed and her response incuding walking, eating, talking, etc. There was some discussion about those treatments and what they did.

Judy asked about what exactly would help the most. The answer was greater coordination help, research to find where they can get the type of treatment they want and need, etc.

The doctor shared that mom has some kidney problems that are now stopping her from getting some medicine that she now needs. Additionally, an MRI she was scheduled for today will not take place because of this. It could damage the kidneys and they do not want to do that further right now. She needed the MRI because she is having double vision and they are worried that it is a tumor, though an initial look another way showed nothing.

The doctor shared several other things to expect and things they are looking at right now specifically with her case.

One of the care team, Cindy (very nice), asked about getting some help to dad and mom through an hospice supporter in the home that will allow dad to focus on mom and then hopefully as they seek other options. The goal would be to graduate.

Mike Gwinn shared about a ministry at the church that assists with hospice. Judy shared that there is a list of approved hospice providers available immediately.

One of the chaplains shared that hospice would simply support and augment the family. Dad shared that he is concerned that mom would feel like he wasn't taking care of her, possibly, and that she might not be comfortable having somebody else taking care of her. Family will think and talk about this and get back with them on a decision.

There was then a discussion about a living will and decisions that mom should make about whether she wants life support or recessitation.

The meeting ended by the team sharing thanks for allowing them the opportunity to meet with us, be with us and hear our story. The Lead Chaplain was very comforting as well.

One of the chaplains (the lady in the back that was observing) went to sleep for most of the meeting. Kelly said that she loved coming to these naps, I mean meetings.