I’m at the hospital to pick up Laura. Waiting for the discharge orders. Her neuro-onc felt that there was nothing more that could be offered in the hospital now.
This is not really good news. Her symptoms are not under control – the main problem being the vomiting. But anti-nausea drugs don’t seem to work because Laura doesn’t really get nauseated, so there’s not many options.
What was supposed to happen at the hospital over the next couple days was that a special “intensive palliative care” team was going to work on managing her symptoms, tweaking treatments, and monitoring her response. But this team evaluated Laura’s case today and had no special insights. The doctors decided that she might as well be home.
This is a big disappointment.
Yesterday we talked with her neuro-onc about her symptom management. I asked what could be done to manage her symptoms that wouldn’t keep her asleep. And he admitted that most of the palliative drugs were sedative. That’s partly why he was hoping that the palliative specialists would have some good ideas.
The only new idea is to try a steroid because the vomiting might be due to some swelling in her brain. And that’s an upper. But it has its own problems.
I want Laura to try the intrathecal. It could have immediate relief. But Laura doesn’t want to. She says she’s afraid; that it sounds like a last resort. I told her that it is and I thought it was worth a try.
We’re going to spend the night in Boston and she could get it tomorrow if she changes her mind, but I can’t push her. There are no right answers. .
Early discharge
Wed, Aug 6th, 2008 7:50pm by dkulp
Tags: Uncategorized
7 responses so far ↓
1 Rocky // Aug 6, 2008 at 10:52 pm
God be with you. You are constantly in my prayers.
Love,Rocky
2 Danine // Aug 6, 2008 at 11:41 pm
I think about you all many times a day and check for updates just as often. Prayers for your peace are being sent up.
3 Heather // Aug 7, 2008 at 8:26 am
We are thinking of you all :). I called Laura yesterday but didn’t get a chance to call back. Talk to you later :).
Love,
H
4 John Tuttle // Aug 7, 2008 at 12:37 pm
We all share in the frustration. If there’s even one treatment that can earn Laura some relief I hope she considers it. Love from the Left Coast.
5 Donna Casey // Aug 7, 2008 at 10:00 pm
Praying for you all.
6 Anita Culosi // Aug 7, 2008 at 10:39 pm
I check your informative and eloquent site often… and I continue to offer my prayers for Laura and your entire family.
May God bless, guide and help you and Laura in making choices and decisions that will best serve and support her.
For whatever comfort it may bring to you, know that you are being thought about and prayed for by many St. Michael families.
7 Irene Bosch // Aug 8, 2008 at 12:52 am
Dear David,
And family,
You have been so strong.
We were so lucky to have known you and your family, because you are absolutely wonderful people. The few moments we were able to share were full of love and kindness. All coming from you, from your souls.
Also, with the rainy night I am sure was a long ride home today. We hope you get some rest.
It most have been a long day….
Here in Boston, it is still raining at it is past mid night. We hope you have arrived safe and lets hope there is a chance for a better day soon.
Tell Laura that the flowers are “all together” as she told me, and as she left them on our table. They are beautiful.
The house is missing you all, and we all wish that tomorrow or in few days Laura will fill better and that the chemotherapy will help.
You are both exemplary. Always remember that.
It is true.
Love,
Irene and Jon.