Sobering stuff

I wanted to post – but my thought are all over the place.

We are waiting to hear when we will go to New York for Nathan’s scans. This time next week we could be there but as of right now we haven’t a clue. I hate how last-minute these things are.

There are three senarios for what will happen.

1. Nathan’s scans are the same worse than at relapse. They have nothing to offer him. We come home. Mild chemo?, Hopspice?

2. Nathan’s scans are improved. They have a trial for him but he needs to wait for an opening so we come home for a week or two and go back.

3. Nathan’s scans are improved. He starts a trial right away. We are there for many weeks.

So – when will come home? What will we be doing? All unknown.

There is another child with relapsed neuroblastoma at Nathan’s clinic. She is friends with my hairdresser and we talk on the phone from time to time. I talked to her yesterday. They have decided to stop treatment on her daughter (who is five). She has called hospice and been to the funeral home. We talked about how she came to the decision and was actually able to make it. Her answer was that is was prayer. For now, her daughter feels great and is able to run around and ride her bike. They think she may make it to Halloween but doubt she’ll make it to Thanksgiving.

I just keep hoping that it is a long time before we are where she is….

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6 responses to “Sobering stuff

  1. What can anyone post in response to that, except that we are all praying that you won’t have to face that any time soon, or ever.

  2. That just sent my thoughts all over the place. Everything from unfair, ro hope, to anger and hope again.(((HUGS))) My continued prayers and heartfilled love.

  3. We’re thinking of you.Matt

  4. (((HUGS))) Definitely have you all in my thoughts and prayers.

  5. We are hoping with you. Josh and Jae

  6. So many prayers that you don’t have to cross that bridge yet and sending much strength for when you do. Hugs! Your family is in my thoughts often.

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