Nellie's Journey on Vidaza

[towncarlady]

I have been following Nellie's journey for quite sometime. I have never met Eli or Nellie; yet, there is a connection that those of us with MDS share, no matter what the exact diagnosis is. It seems that many of you have experienced treatment on Vidaza; I began on Dacogen, September, 2008, after beginning only on Aranesp injections. Like Nellie, I bottomed out the very first round. After 2 units of platelets, four units of blood, and other care...and 10 days in hospital, a few weeks later, we tried, again with only three doses, with not much better results. I continued until February 1-3, 2009. I think I finally got a total of three reduced rounds completed. Platelets were jumping around, so the doctor suggested Vidaza. Because of my intolerance to Decagon and other health factors, I declined to receive Vidaza when scheduled to begin in late March. Not much has changed since I took the chemo. I suppose each of us wants to try what might work.

Have I questioned my decision? Very, very little. Will I change my mind? Probably never. I am 66 years old(8-17-42); on chemo , I was not worth a lot. I feel I have found a large part of myself, again. My last transfusion was March 12, 2009. My counts are not by any means normal, but I am functioning with Aranesp every three weeks.

Learn all you can about your condition, your prognosis, what level of treament the body can handle....then, make the best decision you can. The best treatment for me is prayer, my close circle of friends and family, continuing my musical career in performance, teaching, and playing for church.... and fighting the days of occassional depression, and trying to not be too discouraged.

I have said that I feel many times, it takes more faith to stop treatment, then to continue. God's blessings on us all..we all have a part in this life...Live it as best you can.

Feel free to e-mail me directly: leonettewalls@hughes.net

To Eli and Nellie:
You have been stars in my book. The patient has a difficult time and the caregiver role is tough. We will continue to pray....People in Alabama who don't know Nellie are praying for both of you and others who are facing our common struggle.

[ESeda]

Had to take Nellie back to the hospital yesterday. Started to have fevers and shaking, sugars bottoming out each day, could not stand on her own. Unable to take her to have CBCs done daily. Labs done at ER showed infection and elevated creatine levels over 3 pts. She didn't drink enough water while at home or urinate enough so that created problems also. She is currently in ICU for at least 36 hours then she will go back to the ward on the fourth floor and remain until she either recooperates or we decide to go home again and call Hospis. Really hurts when I think of that.

Nellie's home nurse suggested we call hospis because she (the nurse) feel that Nellie is in the final stages of passing. I gave Nellie the chose of calling hospis or going to the hospital, she wanted to go to the hospital. She is lucid and seems to comprehend all, so I took her to the hospital.

Please pray for a miracle, because I think that is what it will take.

Eli

[Vera W]

Elli, this all breaks my heart, sending you love and courage to submit to God's will in whatever He decides. May the "wisdom that surpasses all understanding" be in your heart. Much love and prayers always, Vera

[launch]

Eli,
I am so sorry to hear this news... I pray each night for you and Nellie... and I will pray especially hard tonight for that Miracle. God Bless you both... Cindy

[ESeda]

Nellie has improved some with all the care she received in the hospital. Today she will leave ICU and go up to her regular floor, the Oncology ward. She jokeingly says, I am going to try a different room this time, I have been in most of them. She is in good spirits. But she is not looking to good. Her potasium shot up sky high and they had to give her some meds to reduce it. It caused her severe diarria to the point that they had to put a catheter in her rectum. Hopfully they can remove it soon. The creatin levels are still in the threes. The Neufrologist said the kidney function was at about 15-20%. No need for dialises yet and she feels that some kidney function will return with the care she is receiving in the hospital.

The Doc believes Nellie was dehydrating quickly without her drip line. She did not drink much water and did not urinate but very little. So that was probably the start of it all. However, she seemed to be losing strength in her legs even during the last week she was in the hospital. So I think that was already the direction that her physical state was going. The appetite she showed for the two days she was at home has begun to fade again. I noticed yesterday she would not eat much. The day before she ate a whole slice of pizza, but the next day she ate only a bite or two. I hope she does better today, she promised me she would.

Thanks so much for your thoughts and comments guys, I pray all the love you have shown Nellie and I comes back at ya ten fold. God Bless.

Eli

[ESeda]

Nellie has developed pnumonia. Having trouble breathing. They stopped giving her as much fluids, because of her retaining too much. Nebulizer treatments every four hours, but that doesn't seem to be enough. She is running a slight fever. Xray of chest each day shows no change in the pnumonia. At this time it is considered to be in a small area but persistant. She tells me she feels no pain, excepted when they move her around to change or clean her up. It is becoming more difficult to understand her slurred speech but it seems her mental stated is still good. She still finds things to joke about and make fun of. She asked for a coconut popcycle last night. Fortunately the cafateria was still open and we were able to find one. She chewed and sucked on it like a little baby. Then a little went down the wrong pipe. Looked very uncofortable for a while, but she was able to clear it out. The nurse gave her something for the anzioty, she became sleepy, I left her about 8:30 pm nearly asleep. She said night, I love you. See you tommorow.

Eli

[ESeda]

She had a bad day Tuesday. Developed lots of fluid in her chest and lungs. Still she occasionally responded by saying OK or NO or YES. Again she told me in a garbled voices, "I Love You" and called my name "Eli". I tried to reassure her that I love her and that it was going to be OK and the she was going home. She had made our daughters and I promise she would not pass in the hospital. I whispered close in her ear, "I am going to take you home, OK?", She said "OK".

I got a hold of the hospice nurse and my daughters and I made arrangements to take her home today, Wednesday. It took a while to set it up and get the bed in place, an ambulance with the right equipment and oxigen supply to take her home. Her doctor didn't think she would make the trip in the ambulance but we managed to make it home. My girls and I spent the afternoon making plans and spending time by her bedside. We ordered chinese food and ate dinner. At around six thirty it was time for her nebulizer treatment. While doing it Nellie started to have respetory distress. Nellie passed on at 7:10 pm this evening. My heart is broken and can't stop crying. We have been together 45 years and she has been the best wife and mother you could wish for. I didn't deserve her. I miss her already. Pray for me.

Eli

[Neil Cuadra]

Eli,

Ruth and I are just devastated. Your devotion, kindness, love, consideration, and humanity have been so apparent. We feel like we know you so well after spending more than a year talking to you, and even though so many of us have fought MDS together and been through the same types of treatments as Nellie, we can only begin to understand the heartache you and your daughters now feel. You have our deepest sympathies.

Even with the warning signs we get, none of us is every really ready to lose the battle or give up a loved one. We're relieved to hear that you and Nellie were able to exchange those last loving words and that she was able to go home where she wanted to be. When it comes to the end, knowing your family is there for you is what we all want.

You DID deserve Nellie, and she deserved a wonderful husband like you. We hope that your memories of wonderful times with her will bring you peace.

[launch]

Dear Eli,

I am so very sorry for you and your Family. Please be comforted knowing she is in Heaven and is in the presence of the Lord. But, even knowing that... doesn't really fill the void of the loved ones left behind.... you and Nellie will be together again.... until then, I pray you and your family are comforted during this very difficult time.... Again... I am so sorry....

God Bless, Cindy

[Vera W]

Dearest Eli, I send you my love and strength. Nellie will always be with you and she is sending you her love, God took her to a safe place and our journeys will all take us to her. She is not gone she is just on the other side and her Spirit soars! I know that I will met her one day. Love is eternal! Vera

[Dick S]

You say your heart is broken, well my heart is broken too. I am so sorry for your lose. In following your journey, I feel I was living it with you. May she ever rest in peace now and may your heart be light. Please stay in touch with us.

[Birgitta-A]

Dear Eli,
Death is hardest on those who are left behind. Nellie is at rest and peace. She is no longer troubled by tiredness, pain and other symptoms. You were a wonderful support to her.
Warm regards
Birgitta-A

[Momsbaby]

eli,

i will not be able to find the right words. i just registered in this forum but i was reading nellies journey since many month. i am german, living in germany and my mom is on vidaza since 4 month.

i was praying for my mom and for nellie many times..... i never saw you and i never met you but but i felt so close to you story and it touched my heart how you both support and love each other.

i did pray for that miracle and now i am just so sad to read this. eli, i do know that nellie is feeling happy right now and that she is watching over you like you watched over her. and you were there and you did what you have promisses her.... you took her home.

i just cant find the right words. i just want you to know, that this is a very sad day for me too and i hope your kids and grandkids are around you to give you comfort.

there is a candle burning in luedenscheid germany, for nellie.

Momsbaby

[JEZ]

My tears flow for you... your story and commitment, one to the other, are awe inspiring and will be a source of strength for all of us who battle marrow diseases. Please know that you have both touched many of us in a very deep way.

JEZ

[april]

Dear Eli,

My thoughts are with you and your family. I am so sorry.
Thank you so much for sharing Nellie's & your journey with us. I feel as if I have lost someone close to me. Please take care of yourself!
Warm hugs,
april

[Joan]

Eli;

My sincere sympathy in your lose of Nellie. I have read your posts faithfully and feel I have lost a friend also. Thank you for sharing Nellie's and your journey. Joan

[netsirk]

Eli,

I am so sad to hear of Nellie's passing. I am fairly new to these forums, but have been reading your posts and became emotionally connected to your story.

I lost my father just 3 weeks ago to MDS, he was 67. I feel your and your daughters' sadness, as I am going through it as well as my brother and sister, and especially my mother. There are no words... we just have to find peace in the fact that they are no longer suffering.

When my dad was alive I never read the forums, I was afraid to. But since his death I've found comfort in reading other people's stories. Yours was a special one.. the love you have for your wife is so obvious through your writings... so many of us who never met you or Nellie feel as though we have lost a friend...

She is in a better place now..

Maybe she and my dad will meet now and share stories of their grandchildren...

Stay in touch..

[Suzanne]

Oh Eli, I am so very sorry for your loss. I logged on today just to check in how Nellie was doing and am in tears for you and your family. I have been following her along since day one since my mom and her disease seemed pretty similar. I am praying that God gives you all the strength you need to get though this.

[ESeda]

To all my friends on this forum:

I sincerely appreciate the love and expressions of sympathy you have shared with me and my family. Your gifts, flowers and well wishes come at a very precious time. I still cry for the lose of my wife of forty fifve years, Nellie, but your kindness to me and my family will always comfort me and hold a special place in my heart.

I pray God will give patients and caregivers alike the strength to continue the fight for even one more day. God Bless you all.

Eli

[run4peach1]

in your time of need, loss, and sorrow........

Take comfort in that you did all you could. You are all in my prayers.

[Sunnsurf@bellsouth.net]

I had shingles after my second cycle of Vidaza. Hospitalized for 5 days. Shingles subsides after a couple weeks and I restarted Vidaza. I now am in my eight Vidaza cycle and have a shingles lesion on my buttocks. My counts are all good. Wondering if I can take my eight round if Vidaza starting tomorrow with these good could and one lesion. Taking Vidaza 100mg every five weeks for five days. Dx cmml. Diane from Florida