Angel's Final Days: Support and Love Needed
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I just want to thank everyone who helped with these funds for caring for Angel’s final days.
And everyone who prayed and messaged everyday.
I changed the picture …. I thought to place a photo before she got sick…. But - she wasn’t that little girl anymore, and she was beautiful even in her struggles. … and Thank Gad, she is not that body anymore either. The morning before she passed, we shared a moment of peaceful visualization and it was a beach at sunset, soft sand and a cool breeze.
After some (poorly communicated) input,
It was suggested that she did not want to be embalmed….
It saddened me to have to process not doing an actual service for her….
It did weigh on me that the embalming process is pretty taxing …
honestly, none of us really know if she actually didn’t ’want to be embalmed’...
Oddly- we never discussed these items…. We never envisioned not winning…. And then in the last two weeks, we just wanted to focus on her having a few good days.
I didn’t want to risk doing something she might have adamantly not wanted… and- when I pondered over what they have to do to the body for a viewing … I didn’t want her body handled that way….
Does that make sense?
It was really difficult to find the right choice…. So, I closed the fundraiser and chose direct cremation. I’ve ordered several different scattering urns and her people in Florida and in Oklahoma will do a ‘celebration of
Life’ in their own ways.
Thank you, Truly
Update #2
We are entering our final days….
As I sit with her, and she becomes less and less responsive… I have to prepare the next steps…
I know who I am supposed to call… I can walk through the steps of what will happen in my mind….
I have selected the funeral home that will handle her cremation….
And, suddenly I realize…. When they come to take her away… will that be the last time I look upon her face?
Is that the final goodbye? It seems so cold…. So, unceremonial…. And then… here’s your bag of ashes?
She deserves so much more than that!
All cultures have a ceremonial death process … and I feel that it is an important part of the healing process to have a service for her.
I would like to be able to provide a memorial service before her cremation.
This package is $5,500
We are only half way to that goal.
I know that black box they put them in all too well… and I hate even the thought of that.
Please help me to honor the life of this beautiful - wonderful young woman who truly is too good for this world.
Update-
Angel has been home for 6 days.
She has had some really good days- surrounded by many people who were able to take the trip to come see her. Although she was very tired… she stayed up the whole day and was just so happy.
Last night, she had a really challenging seizure. And another this morning and this afternoon.
This body is failing and can no longer hold her warrior spirit!
It has been my absolute honor to be with her through this process. She is such an amazing, beautiful soul! And she has made me a better person just by knowing her.
We have no resources for her end of life planning…. Which is coming so fast.
Please- if you are able- donate to honor this amazing young woman as she gracefully prepares for her final hours in this body!
Please- share with your churches, your neighborhood, your mailman!
Read her story and know who she is and remember her… and pray for her peace.
You may also donate directly to cash app $KAR0502
Thank you so much.
Below is an accounting of our last two months….
On Nov 17th, 2024, I picked up Angel from a friends house in Oklahoma City… she had a suitcase, a wheel chair and a rusty walker. 2 weeks prior, she was admitted to the cancer center.
Her stage 4 breast cancer with brain metastasis had returned. She was so sick and disoriented. Her speech was drawled from previous radiation treatment and she had to close one eye in order to see. She had to borrow money to pay for her medications.
But she was so positive! She spent the entire 6 hour drive home to Houston sharing her testimonial with me! She never faltered in her faith, or her hope, or her love for others.
We immediately began the ardent task of setting up her, so desperately needed, medical treatments.
In the moment- it seemed as though coming to live with me was bringing her closer to the world’s leading cancer treatment center in Houston. - the series of unfortunate circumstances that lead to her having no support system in Oklahoma brought her to me and it was all just meant to be!- - -
Although her cancer was aggressive- it could be managed with strict care and continued treatment …
Unfortunately, what unfolded over the next, not quite 2 months, would ultimately rob her of years of continued life! And the world of a wonderful soul!
Following is an accounting of our experience with the TX Medicaid system;
Angel has been on disability for some time, but didn’t qualify for Medicare… which triggers Medicaid for elderly and disabled persons. We immediately went to our local human services office, who informed us that we would need to cancel her services in Oklahoma before she could apply in Texas. We called Oklahoma, services were set to be cancelled Nov 31st…
We wait…..
We were already in communication with MD Anderson… they were so wonderful… they had all of her information and records… all we needed was her insurance…
Dec 2nd arrived… she was looking a little puffy, instead of going to the human services office, we went to St Luke’s Hospital. They admitted her, got some steroids and fluids. I thought they would help me expedite her Medicaid case…. Instead… they informed me that I would need to call 211……….. they also could not allow her to take her chemo pills. After 3 days of sliding her chemo pills and getting nowhere with her insurance, I pulled her from the hospital and took her back to the human services office…
This time, we were told that, because she has disability, we actually needed to go to or call the social security administration.
So- we left there and went to the social security office! Here, the rep told us that she had updated her information and that it would be sent to the health and human services devision within 24-48 hours!
We WAIT……
24 hours pass and we return to the health and human services office. This time, we were taken to a back office area by a person who said they were a ‘supervisor’ and told that her Medicaid would be initiated and provided by the social security administration…. I knew this couldn’t be correct! Medicaid is a state program! She was adamant…. We would not need to return for her insurance… but- great news- you can still apply for food stamps!
she provided me a phone number to call….
At 430 pm I called… the information from SSA had not been received… the rep said she would need to close her Medicaid application because it shows as a denial from the social security administration!
But-
GREAT NEWS- she qualifies for $130/mo in food stamps! She closed Angel’s Medicaid case!
Numerous calls were made to the SSA who assured us the information had been sent!
The following Monday- we return to the health and human services office!
It is now December 16th! This time, we were taken to a different hallway…. When I ask what this portion of the office is, we are told this is the section that handles Medicaid for elderly and disabled persons! “Why is this the first time we have been here?!” Our caseworker has no idea why this is our first interaction, nor does she know why the other department was so adamant that her Medicaid would be processed through the social security administration!
she pulls Angel’s information and sees that, indeed… the information from SSA had been sent, unfortunately, now it would need to be reviewed by an underwriter and that can take up to 2 weeks!!!!
WHAT!???
”Maam, please— we have waited so long! Her life is literally on the line here! What do we need to do? Call our congressman?” Understanding; empathetic; but powerless…. She’s says ‘yes, that’s likely what you’ll need to do!’
”Please! Can you call the underwriter? Can you flag the case? Can we do anything to push this along?”
She promises to try.
The following day, Dec 17th, she calls and leaves a voicemail! We’ve finally got it! “Your insurance has been approved!” — and back dated to Dec 1st (gee, thanks).
We were so excited!
We immediately called MD Anderson- they need the Medicaid ID #! Of coarse! Call back to the human services office … speaking to another person in the MEDP department….
And SHE tells us they don’t handle these cases, the SSA does!!!
’MAAM, we literally were told 20 minutes ago she was approved!
”oh, sorry- here’s your EDG#”
Back to MD Anderson- ‘doesn’t work… need actual insurance number’. Have to wait for cards.
We WAIT! ….
3 days later… received a letter from TX health and human services….. NOT her insurance card….
ITS A DENIAL LETTER!
“You do not qualify for Medicaid for disabled persons”
WHAT!!!!!!!!
Another phone call….
“Yes maam, I assure you her Medicaid is active and all is well. It shows approval on DEC 17th”.
Our denial letter was dated the 16th…. So confused!
This person gives us the Medicaid number… but it is realized that someone has entered her birthdate incorrectly….
“But, no worries… we are going to correct that asap”.
Call MD Anderson—- “here is the Medicaid number….”
Such wonderful news!
“Hmmmm, nothing is showing up! Unfortunately, we cannot schedule her first appointment until everything is 100%”
We WAIT!….
Case manager notes that the problem is her birthdate inaccuracy…. I assure her it was caught and escalated for correction.. we set the initial appointments. Unfortunately, none available until Jan 13th! 2 weeks! 2 more, long, precious weeks!
Just got to stay strong!
It’s coming, closer and closer…..
All the while, Angel was deteriorating! She wasn’t eating. She was increasingly tired. She was disoriented….
We went to emergency. An hour into the ER visit, I received a call from her case coordinator at MD Anderson….
Unfortunately, her birthdate had still not been corrected! She could not pass financial clearance until all information was corrected! We would need to push back her first appointment!
WHAT!!!
Immediately, call the human services office…
“it takes up to 30 days to review information changes… this case is not set for review until Jan 22nd!”
Almost exactly 30 days from date the error was reported!
”MAAM, OMG! She is literally losing her life!”
She puts me on hold…. No one ever returns to the call!
At this point- at the emergency room, they quickly find that she has a pulmonary embolism and a DVT in her leg. The treatment is blood thinners…. Blood thinners could cause her brain to bleed…..
The medical staff knew from the start, it is too late for Angel. After 4 days of wonderful, caring
Support from Memorial Herman… after days of gentle nudges that palliative care was imminent… we finally had to face the truth in front of us. Our time was fading…
After much prayer and consultation and contemplation…. And laying out the options in front of us- Angel chose to leave Memorial Herman and go to MD Anderson acute emergency care center (I had no idea this was even an option).
Angel still wanted to fight!
MD Anderson had more details on Angel’s specific condition….
But the outcome was the same….. Hospice Care was our next step.
But- Good News- Medicaid will cover everything that’s needed! (Irony)
We set the meeting for the hospice company…..
8 am the next day! We would have her home that afternoon and she could at least die where she felt at peace and loved.
Cesar said it would take 15 minutes!
His office staff took her information- ran it through- she does not have long term care or hospice coverage!
WHAT???!!!!
How?
The staff call the benefit line for providers and they are told ‘we can not release her benefit information to non family members!”
“Maam- we are providers!”
“Click”
They hung up!
WHAT!!????
At 9:45 am I start calling!
After 4 hours…. 25 calls and as many transfers ….
We learned that her insurance carrier benefits begin Feb 1st!
We couldn’t select a provider and specific doctor (as required by Medicaid for elderly and disabled) because her birthdate was still wrong!
So- because we didn’t select one it defaulted to ‘state choice’…….
In the meantime…. She has traditional Medicaid ….
Through her traditional Medicaid…. She does indeed have coverage …
Why did that take 25 phone calls???
The last person…. Said ‘yes- she has coverage’……. All we need to do is run it….. and then she said ‘her benefits start Feb 1st!
WAIT!
What the hell is going on here!
Cesar (Hospice rep) says- “dont worry- we will get it handled!”
Back to planning for equipment and transport home!
I had to bring her home in my car….. no way we could pay for ambulance transfer…. She was happier this way, anyway….
We got home at 10 pm Thursday, January 17th…. Exactly 2 months since the first time she ‘came home’
I found out from the hospice nurse that the hospice company accepted her as a charity patient!
I love my state and I am proud to consider myself a Texan by heart! But I am so ashamed of my beautiful state. How we care for those unable to care for themselves says so much about our society!
She couldn’t access the care that she so clearly qualified for in order to save her life!
And then- they twisted and looped around and she can’t access (through insurance) care needed to die!
I am just aghast! Appalled! Ashamed! Angry!
We have to fix this!
It’s too late for Angel- but how many more are suffering and dying because of this?
We NEED help!
I need to plan her services….
Feed her loved ones as they come to help and say good bye.
I need to find a mobile nail tech to come and do her nails for her (I promised we would get pedicures)
I don’t have a full list of everything needed or even any clue how long she will hold on….
But, please…. If you are moved by her story and able to help, please consider donating or sharing.
Organizer
Kristen Robison
Organizer
Conroe, TX