We hear your sorrow

It is so hard to know something is wrong and not know what it is; it is also very hard to know what something is if it is bad. I think it is harder still if you feel like, even in part, that you together are isolated in caring–in realizing how important in life it is. Your sadness about the doctor that did not listen is clear. Your sadness before in your kids reactions is clear, but I think it is hard for lots of people to look out for the longterm when the shortterm issues are themselves painful to deal with. Your kids will come to understand. I hope you find a doctor to help that will.
I would like to say what we advise families of children with cancer because it applies….
1. Follow your heart in your decisions.
2. Each decision you make, make it with the understanding that it was made with the best effort you could with the information that was available at that time and forgive yourself if the outcome is not what you hoped. You as family made the best choices that you could at the time for your mother and for Bill. When you take a fork in the road, try not to go back and be mad with yourself for not knowing the best route to travel–especially later when you find where the other road led. Be kind to your own selves.
3. Any team helping to take care of someone ill needs to include both people with knowledge and objectivity as well as people who love them and know them. Listen to your heart about what works for Bill and keep advocating for him. I hope you find a medical provider that listens to you as a “Bill expert” and believes in you are the strong and courageous advocate that you are. I would wonder if he will not continue to need neurologic expertise because of the symptoms of amyloidosis.

I am not trying to lecture or smooth over anything that is said. I am just trying to say that we are family here and we do support you and understand the need to know, the need to be heard, and also the need to be kind about any past decisions. I came to the hospital this weekend to talk with a family with a child whose cancer had returned and despite four different treatments in the last several months, nothing is stopping this tumor from getting worse and worse. They are an extremely loving family and strong advocates and have done everything they can for their little one. Some of the hospital people are upset that they want to keep fighting for their child including life-support as he is so extremely sick. But most, because it is a caring children’s hospital realize that you treat child and family, now and future, and that this family needs to feel at peace with the decisions that are made and that they are heard as their heart cries out for love of their little one as he is dying. Each moment is precious. All of this got me into this mindset about families. Sorry if it is heavy.

I hope that you continue to come here as family as well. Even though CIDP is rare, neuropathy from amyloidosis is a lot rarer and a lot of the issues will be the same.
WithHope