Showing posts with label palliative-care. Show all posts
Showing posts with label palliative-care. Show all posts

19 January, 2009

For PapAmore, Arend 'Odee' Lenderink, Palliative Care Awareness

http://papamore.blogspot.com/2009/01/for-papamoreare-you-familiar-with.html


For PapAmore...Are You Familiar With Palliative Care?

I want to make a difference for my Dad...
EVERYONE should be Privy to certain Information, regardless of Internet Access and Skills, Physician Communication Ability, Current Ability to Absorb and/or Hear the Information at that moment, etc.

Is it really okay for ANYONE to tell another human being that due to lack of Medical Options that their life is over and THEN to send them out the door without sharing with them VITAL RESOURCES regarding AVAILABLE?!

Without googling Palliative Care and contacting them on our own, my Dad would not even have had a pain relief prescription, he was dying from AML without even a prescription for relief from the intense pain.

I can't change the whole world, but when I have seen my Hero tragically inflicted by the cruel, senseless lack of what should be a required (seemingly, sharing hospice and palliative care resources is currently not mandatory, or so we have been led to believe) distribution of a simple brochure entailing information...that is something easily remedied, imo...

The goal of palliative care is to prevent and relieve suffering and to ensure the best quality of life for patients with serious illness. It is offered simultaneously with all other appropriate medical treatment.



Letter sent out, Please Copy/Paste, Thank-You!

All that my Dad, Arend 'Odee' Lenderink , was told by his Oncologist was that medically he had no more options, he was was then sent on his way with no resources and never informed of Palliative Care, not verbally, not via print materials, no information shared in any form nor matter... http://papamore.blogspot.com/2009/01/for-papamoreare-you-familiar-with.html

The only way that we found out about Palliative Care was through my extensive (and desperate) googling...thus on the internet I discovered Palliative Care, I immediately called the closest Palliative Care facility (St. Mary's Lacks Cancer Center) and they were wonderful, we literally cried tears of relief and comfort as they even set up a house visit at my parent's home the very next morning. (I discovered Palliative Care online 5 days before my Dad died from AML)

They were also the ones to bravely share that contrary to my Father's oncologist (Dr. Amy C. Vanderwoude) 2nd opinions are a good thing, a thing called clinical trials exist, Palliative Care is available, pain medication can be prescribed, introduced us to Hydrea, informed us that my "no options" Father was the healthiest AML patient that they had ever seen, that Hospice is another option, etc.

In an attempt to put a positive spin on this, I would like to (if it is already a policy, all the better, I would so appreciate knowing either way please) somehow help however I might be able towards requiring that oncologist's share Palliative Care information and resources in written form...

Prior to contact with Palliative Care, my Father (my entire Family) was left without ANY options...it was such a dark, scary, horrific time anyway and then to not have any resources or information shared by his oncologist with us...I feel compelled to ensure that others need not go through the additional agony of enforced ignorance as we were instructed to abide by and endured.

More on my Precious Dad, Odee Lenderink, who died from AML on 1/11/09 http://papamore.blogspot.com

Thank You so much for your time and for all that you do...

Please Help Make A Positive Change...For PapAmore...

04 January, 2009

Living with AML, any advice, please?

My Dad is 70 years old young, he looks and feels great, there's only one problem...he has AML, Leukemia, and both a try at chemo as well as mylotarg, have not put him into remission...so now? Well, thus the point of this post...

If you've ever read, know, heard, tried of something, please share...

Please don't take on the role of diffusing my "fight" for my Father, this is how I must travel this journey...God understands, my Dad supports me and to be quite honest, that's really all the opinions regarding that matter.

Are you or is anyone that you know familiar with AML? Do you have any contacts in this field? Have you or one of yours ever traveled a similar journey? Could you please take some time to share some tips, advice, resources that you might have learned along the way?

Please don't hesitate to share...


Thank You


PapAmore