Rebecca, My Precious Daughter

Rebecca—

The second daughter of my first love,

Real happiness had again arrived,

Still a first, and child born of love,

For on a cold morning she was born,

To warm our hearts with her tender first cry..

That day, she made me so wonderfully glad..

For from within her mother she came,

To bring light and liveliness to us

So sweet, and so close to our heart

Our home was never again the same!

Oh she was thoughtful, she was smart.

She was bright and sometimes tart!

Whenever some odd thing occurred,

Her every ready, “ what-ever!”

She was sunshine on a winter day..

Her friends and she, so alive!

Inside, the games, the dolls,

The playhouses, and teas and such..

But then again, much fun outside

on the tire swing. Hung from a

rustic beam.. she would go around

and around.. “daddy, spin me please!”

Off and away, was she to school,

up the icy and impossible hill.

Sliding and skating and then away.

On the bus with her friend, Evdokia..

What I would give, with all my heart

To have her back just as at the start.

For kids ever grow, and away they go.

Life takes them out where we are scared to go

God keep her heart and lead to you..

For she is yours , and a blessing too!

My daughter I love, so close, so free,

The joys I know, you gave her to me..

Living now, as older I get,

I look to the window, to the east and west.

She’s coming home.. I know she is..

My sweet little girl. My heart!

Oscarlite "dad"

Rebecca passed away on January 4, 2016 after an extended illness. We believe she is in a Holy Place with her Lord. I Love you Rebecca! your dad, M.O. Michael Oscar Jones

These were all posted within a 13 month period, starting in November of 2014: Rebecca was under the care of University of Washington Medical Center, and she spent the last 93 days there, until at the last she left us when infection entered her heart.

Post #1

I am a 28 year old living on my parents and families kindness and charity. Despite their willingness and determination to see me healed they have neared the end of their fiscal rope. Ignoring their own bills and needs. Working overtime, making a million sacrifices.

I was diagnosed and treated for Autoimmune Hepatitis in 2008. Despite seeing multiple specialists I never responded to treatment. I now have decompensated liver failure. Conventional medicine only offers me a liver transplant. Which I have decided not to do.

In August I took a turn for the worse. We were talking end of life and hospice. I was in the hospital every two weeks for months with hepatic encephalopathy. Which is basically a coma that left in will kill me as my brain marinates in ammonia my liver can no longer get rid of.

However my mother found a doctor in a city 600 miles away. She is the perfect doctor for me. She diagnosed me as having Lyme's and is treating me for that as well as several coinfections and other deficiencies which could be why I never responded to treatment.

We have been healing my liver with alpha lipoic and glutithione infusions every month, which is an essential part of my recovery. I am slowly regaining my health. My numbers are improving as well as my color, energy and my appearance. I have hope, but the treatments aren't covered by insurance. Or the expense of the trips and my copay on all my hospital bills already buried me. The only disability or funds I get at the moment amounts to 350 a month.

I hope to get to the place where I can work again. But until then I am a burden. The best temporary solution I can arrive at is spreading the cost of treatments and supplements and trips among those who chose to help.

Thank you for reading my story and for anything you may wish to give. Regardless if you would like more information to perhaps help a loved one or yourself in a similar sounding situation. Or just an update feel free to leave a message and I would love to hear from you. The greatest healing therapy is friendship and love.

Post #2

Went to Anchorage last week. Came back feeling great but while I was down there I had an ultrasound.

First one since 2013 so I should have expected my spleen and liver to be in worse condition. What also showed up was varices veins in my stomach. I had had a previous incident where I didn't finish the banding in my esophageal tube. So I suppose it was natural progression but added with the fluid in my right lung I was a little hopeless for a while.

Onto better news some of my liver enzymes were improved and no more visible ascities.

Thank you everyone for your continued support. Emotionally, physically, and financially. I really have a lot of great people pulling for me. I can't express how much that means to me.

Post #3

Infections, setbacks disappointment and pain, even a brief stop at the hospital. These two months have really put a toll on me. I am headed back to Anchorage for treatment this coming week. I hope to regain all that I lost physically in that time.

I have been doing more reading and discovered more. helpful solutions to some of my mounting problems, as well as explanations for what I am experiencing. I also have the past knowledge of previous experience to make these steps up in a shorter amount of time.

I have my outpatient esophageal banding late in March. I am looking forward to it. I also have found a new doctor in town that I believe is more in line with my health care plan. I was beginning to resent my current doctor and he was making it hard for me to maintain a positive mental position.

Resolve and a plan are forming. With the help of others I know I can start contributing to the community. That gives me something to look forward to.

Within my first few visits of the hospital I met the head nurse. She let me pick a meditation blindly. The card I picked was unity. I was at first disappointed but as I read it, it resonated with me and brought me to tears. I was a person that valued and prided my independence. Even if I crippled myself with it.

Now I strive to offer more to my community and that as I lean on people I will grow strong enough to let people depend on me. It is that hope and with it a gelling start of plan-- a promise that gives me the will power to continue to fight even when I have nights that I don't think I have the strength to live through.

Post #4

So it has been awhile since I have updated this. I have been going through a lot.

Drastic change of course I have accepted that I need a liver transplant to live and I do want to live. So I am off to Washington, this coming week, to reenter the transplant program. There seems to be a rush, as I have had quite a few complications lately. I think my doctors and I have gotten to the bottom of it. I hope that things will slow down. While I would like to get on my life and a transplant seems to be the answer, I am not quite jumping at the bit, ;) so to speak.

Maybe I am in a dream world but I still sort of hope and feel like I can beat this without it. I have a tendency to be unpredictable as I am a fighter and seem to surprise some of the doctors I have seen.

I recently started physical therapy which I am excited about. I lost a lot of strength in the past couple of months and regaining some ground feels good! I do need to work on communicating with so many of my friends. Instead of always making and breaking plans. I simply gave up, for a while. I still don't have a ton of energy so please don't take it personally if I have not contacted so many of the people I think of dearly. It was hard to emotionally and mentally adjust to the about face. As well as so many different challenges that seemed to arise. But having so many people supporting me in so many ways that I simply couldn't stay down, so thank you for helping me through this time.

Have a blessed day and I look forward to seeing or talking to you soon.

Post #5

So it has been awhile since I have updated this. I have been going through a lot.

Drastic change of course I have accepted that I need a liver transplant to live and I do want to live. So I am off to Washington, this coming week, to reenter the transplant program. There seems to be a rush, as I have had quite a few complications lately. I think my doctors and I have gotten to the bottom of it. I hope that things will slow down. While I would like to get on my life and a transplant seems to be the answer, I am not quite jumping at the bit, ;) so to speak.

Maybe I am in a dream world but I still sort of hope and feel like I can beat this without it. I have a tendency to be unpredictable as I am a fighter and seem to surprise some of the doctors I have seen.

I recently started physical therapy which I am excited about. I lost a lot of strength in the past couple of months and regaining some ground feels good! I do need to work on communicating with so many of my friends. Instead of always making and breaking plans. I simply gave up, for a while. I still don't have a ton of energy so please don't take it personally if I have not contacted so many of the people I think of dearly. It was hard to emotionally and mentally adjust to the about face. As well as so many different challenges that seemed to arise. But having so many people supporting me in so many ways that I simply couldn't stay down, so thank you for helping me through this time.

Have a blessed day and I look forward to seeing or talking to you soon.

Post #6

Rereading my last post a lot has happened since my last update. In Seattle I was hospitalized for certain imbalances. They took the opportunity to expedite my transplant listing. They said I should have been on the list a while ago. Not a news flash but a bit of a surprise. All in all I was hospitalized for two weeks. But I did miss a lot of the smoke in Fairbanks. I also got an opportunity to meet a lot of my team. In a better way then I would have if I had broken the trips up over months as it typically happens. I have greater faith in the head surgeon. Last time was a like meeting a bear who was trying to hibernate. The guy was falling asleep as we were talking to him. And he was resentful of having to be there. But this other surgeon takes sleep deprivation seriously and was able to reassure us.

They took me off almost all my supplements which has been a small battle with my energy level and so forth. But it is a work in process. I am taking the SE3 (stem-cell enhancer) regardless. I feel like the SE2 really helped me. Two months prior I had bad varicies veins all the way to my stomach according to imaging. Which is in line with my physical condition and my last EGD with banding. When the doctors went in there was nothing there. It has also helped my pleural effusion.

I am now on the list even insurance has approved it, which was the final remaining detail. I do need to find an endocrinologist here in Alaska. Apparently Fairbanks doesn't have any. So I have a reason to go to Anchorage eventually, looking forward to seeing the entire team in Alaska Alternative. They have been such great help beyond the mere physical. So even if I just stop in for a visit it will be wonderful to see everyone again.


Still it has been a big adjustment for everything to happen so quickly. However we are now playing the waiting game so I should have time to adjust.

Physical therapy has also been a big help. I am happy to regain some of my strength back. So other then a trip back to Seattle the end of August that is about all I have to report. I have to be seen there every three months until I get the transplant. Then I will be spending three months recovering and will be back many times in that next year.

Post #7

This is Naomi posting for Rebecca who is busy trying to deal with doctors and heal. She wanted to pass on her thanks and love to each and everyone of you for your prayers, thoughts and concerns. She's loves you all!! A quick update since she was medivac'ed to Seattle last week for kidneys that were not wanting to function. They have started to heal. Rebecca is fighting an unknown infection each is full of its own sets of challenges. The Doctors now know to listen to Mom when she says Rebecca 's ammonia level is too high. She has been fighting pain and a constant invasion of space and privacy. Today pain is better but blood count is low and the docs are hustling to figure why. Thank you again for your blanket of support. Both spiritually and monetarily. Much love to all!!

Post #8

Hello All,
This is Naomi again. Making an update per Rebecca's request. She has been in University of Washington Hospital for about a month now. She has moved out of ICU, into a more private room with a few less interruptions. Due to the infection she had her liver has quit working completely and her kidneys were shutting down. So they were giving her dialysis 6 hours per day in ICU but now are down to 4 to remove extra fluids and the toxins from her body. She is off stand by and back on the transplant list with one other person ahead of her. She has lost a lot of the extra fluids and is down to 140. She is pretty weak but has made huge strides in sitting up for long periods of time and stood up today 3 times!! We want to thank you again for your thoughts and your prayers. She sends her love. If you would like to write her as the days do get long there. Her address is
University of Washington Medical Center, 1959 NE Pacific St, Seattle WA 98195, Patient: Rebecca Jones, 4 Room 4308 SE. Love to all. Naomi

Post #9

Hey all, this is Naomi checking in for Rebecca again. She has had a lot ups and downs on this Roller Coaster of a stay in Seattle. But she is getting stronger in spite of some set backs. Lets see what all has happened. She conquered the yeast infection in her blood and got back on the list! Yeah! During one of the paracentesis' (pulls fluid off her stomach as her liver and kidneys are not able to get rid of the fluids on their own) they nicked her vein and caused internal bleeding which counter acting that and stopping it used up quite a bit of her valuable stores of blood. They were able to do a small surgery to cauterize the vein and stop the bleeding. She had a liver offer and accepted, however it was not a good one. Which gives the hospital to stock up more on her blood. In the meantime she has been building up her strength with PT and OT, mom works with her daily. Her IV on her neck gave out with the TPN, so her calorie intake and protein have to stay up and the doc monitor closely. They have finally taken out the chest tube that had caused such discomfort today. They found MRSA on the tube. We are still waiting to hear back if she has it or not. Praying that she doesn't!
I want to take a moment to thank all of you for your support, calls, texts, cards, letters, prayers and thoughts! They mean a lot!!! Rebecca's address is still the same as the last post. Love to all! Merry Christmas and Happy New Year!

Post #10

Hello all this is one last post from Naomi Rebecca's sister. I wanted to let you all know if you didn't already know that she went home to be with her Jesus January 4, 2016 at 4:25pm Seattle time. She had found out that that nasty reoccurring yeast infection that she just couldn't quite shake, and the doctors with their meds couldn't quite kill had made its way to her heart thus making her completely ineligible for a transplant ever again. She was so matter of fact about it. In fact I think she knew what mom and I refused to see. She looked at mom and said "well that's it, we're finished" "I'm ready to go Home." She spoke to a couple of family members myself included knowing that it would just be a matter of time knowing that the liver and kidney were off the table and she was already fighting for breath. I prayed that she wouldn't suffer long, and the Lord is indeed merciful because she didn't. She didn't linger long at all mom was with her the whole time. I was waiting at the airport when she soared away with Jesus. The important thing is that she is healed, and whole again. His will is perfect and He saw something that made this the best way. Her little body was soo tired. She was soo gracious and kind, but she was hurting all the time. Some days she was not quite with us, others all there, some times she was aware that she was slipping. She cherished all of your friendships, thoughts, prayers, cards, gifts. She got to where she couldn't write with her tremor, and energy was sparse. Just to get up and go in her chariot (wheelchair) once or twice was all she could bear, other days she couldn't even do that. So be happy knowing that she is once again, with a full head of head, rosy complexion, muscle toned and strong, climbing her beloved rocks, singing and dancing with the angels, flying with the eagles and butterflies. Thank you so much for all your love and support. It meant the world to all of us. Especially to her. She loved each and everyone of you. Her final message to you is that she will see you soon! Lord Bless and Prayers. Naomi

Rebecca, not all things are perfect, and I know you have been through a lot, but as your daddy, I care, and I love you! I know you feel somehow that I let you down, but I have not stopped being your daddy, and I truly love you, and would do anything for you. I am sorry if I ever failed you, as your daddy, and that you ever felt you couldn't come to me for whatever reason, for I never meant to fail you, as your daddy, and I pray for you every single day. I pray urgently that our heavenly father will heal you and reveal himself to you, and show you his awesome love and care. All of our life lived is meant to bring us to him and to find him in the middle of the chaos and the void and the darkness filled within this world. But he is there. he is powerful and he can take away the darkness, the aching and the hurting of even you , my baby girl. I'm sorry of when you would go to other places to try to find the love that you felt missing, and that you were hurt in the dark and the cold of winter and the loneliness of summer, when you felt not loved. but I always have been there for you, even in the midst of rejection and would do anything within my power to help you. I fear I led you the wrong way, the wrong direction, when I should have been showing the awesome love of eternity. the love of grace that came down from heaven. I ask you to forgive me for my folly, for not considering all of these things and at times not being there for you. I loved you when you were born.. I loved you when you first went to school, the first time you brought me a paper and said here, daddy this is for you!. Rebecca. this is daddy, and I love you. Why would you ever think I could not love you? I am here for you and will you come to see me, my precious baby girl, becky. I love you. - Daddy. Oct 27, 2013