Saturday, April 08, 2006

"i didn't know they had hospice for kids"

Yes, hospice exists for kids.
The grandmother of one of my patients said that to me last week.
In the last week, I have learned the ins and outs of this all-important transitions. Two of my patients on the ward went home yesterday. By ambulance. One with a chest tube that persisted in pouring out fluid speckled with malignant lymphoma, the other with a body that was devastated at birth, yet still managed to allow one of the most beautiful spirits to inhabit the earth for a short time.
It's a sad time, but also a celebratory time. I didn't fully understand that until this week. This is the critical time for these families, now that they've made this most difficult decision, to celebrate the life of their child, their love for each other. Once that focus shifts, it's as if all the love just pours out.
Some families never get there. Perhaps there is something yet inside them that cannot let go. One of the families was in a most bizarre quagmire of arranging home hospice and comfort care, including the pre-hospital DNR/DNI order, but are still hoping that the alternative medicine treatments will save her. Her mother said to me as they were leaving yesterday that she hoped to bring her back in in a few months, a completely healthy girl. I smiled on the outside and murmured, "I hope so, too." On the inside, what I am hoping for is that they find the strength to let her go before it's too late for them to say goodbye, before it's too late to help her prepare for her death. She's 12. She's scared. She needs them now more than ever to guide her. I hope with all my heart that they can let her go so that her last days might be peaceful.
They are both wonderful children whose lives are far too short. But we love and care for them while they are here. That's the best we can offer, right?


Wrkinprogress said...

Bless you heart, and bless their hearts as well. This must be the most difficult part of medicine -- dealing with children with terminal illnesses.
For what it's worth, sending all the good vibes I can muster your way, for you and for the patients and families.

One of the greatest experiences I've had in my life is touring St. Jude Children's Research Hospital in Memphis. What I was struck by is the hope and the joy that is present in every person and every part of that facility. Though the staff and patients, and I guess families, are very realistic, they never seem to let that overshadow the point of the hospital -- saving lives. It might not be their life that is saved, or their loved ones, but someone everyone seems to pull together in a joint effort to eventually cure children's cancers. If anyone is ever in the Memphis area, please, do yourself and your community a favor by going to this amazing place and taking the tour. You will be moved beyond words, and you will realize that there truly is good in this world.


PS Glad to see another of your posts! :)

star firstbaseman said...

Oh, how terrible. I don't know if I could handle myself, in your shoes.

sister smile said...

That's all any of us can do. It's a good thing none of us can see into the future. We just have to remember to make the most of whatever time we have here.

RunAwayImagination said...

I took care of my late wife during her year-long battle with acute myelogenous leukemia. She achieved remission after 3 rounds of chemo (and 102 days in the hospital). Remission lasted 6 months, then she relapsed. A bone marrow transplant was ruled out, and and rather than die in the hospital, she decided to come home to die with me providing 24x7 care under Hospice guidance. Hers was a courageous decision, and those last six weeks were sacred if very difficult times for us. I'm thankful that we were able to face the inevitable and enjoy our limited time together at home instead of spending it in the hospital.

That experience taught me that life is short, and you'd better enjoy it while you can.

Wrkinprogress said...

Hope you're doing ok out there, girlMD. It's been a while since you've posted. I'm sure you're exceptionally busy, as most docs are.

Sending support vibes your way.