Nellie's Journey on Vidaza

[helen c.]

our grandchildren are the flowers and sunshine in our lives. nellie has done her job well. love is what we will all be remembered for not material things. hope all is well tomorrow

[ESeda]

Nellie looks good today. Don't know what her counts are, but I decided to take a break from knowing all. she looks really good, and even better here at home. Made her a cup of coffe, and she is watching a movie on demand, with one of her grandsons, Chris. Chris is 22 and all lovie dovie with grandma. We raised him till he was 13. Mike, the oldest will be here later, and Adam Elias, the middle one, with Ben, the great grandson will get here late tonight. I think Nellie is going to have a few good days.

Well I probably won't be here for a few days so I'll ask now that you all keep on praying. And all you guys going through your journies, hang in there and God be with you. See ya.

Eli

[Suzanne]

Eli,
I just wanted you to know that both you and Nellie are in my prayes. My heart goes out to both of you. I hope Nellie is enjoying her family and feeling good! Hugs to you both....

Suzanne

[ESeda]

Nellie sat with her three oldest grandsons, which she happened to raise for much of their first years of life. They laughed and they cried together. Two of their wives were there too. The third was not able to come.

We saw Dr Morris yesterday morning, he ordered a tx of reds and plts for today. I am waiting for a call to let us know when we can come to the hospital. Nellie thought she would like to start her in hospital treatment on Monday. Dr. Morris is leaving that to her. She is also having more blisters in her mouth. Very uncomfortable.

Thanks Suzzanne for the kind words and prayers, we sure can use them.

Eli

[ESeda]

Dr Morris suggested Nellie stay in hospital thru the weekend. He feels she will tax her strength too much and not be able to start the chemo on Monday. So that's what we will do.

She felt really good all day Friday, reds at 11.2. Today reds at 9.8 and plts dropping fast. She received plts today and will probably be ready for reds tomorrow. Hard to believe the drop, so fast.... She will receive a drug known as Ara C for 7 days, with who knows how long to recover. Dr does not feel like she will make it. Must be a really tough recepy. I am worried. Almost want not to do it. But then what?? Nellie is up for it. I will support her in her decision and be there for her, all the way. Keep on praying, please.

God Bless you guys for being there for us.

Eli.

[ESeda]

Thanks Suzzanne for your continued prayers. We pray for your mom and all those fighting this beast.

Nellie had a niece day Saturday and Sunday. She visited with many family and friends who came to the hospital to see her. Most of all she loved her grandchildren that were able to come. However all the visitors may have cost her. Sunday she developed soreness in her throat. Very painful. She needed latercaine syrup to pnumb it. Very difficult to swallow and talk. Monday was worse. She developed a fever of 103+. Fought most of the day to get it down. Finally got it back to normal. Cultures taken but results not back yet. She got Tylenol and antiboitics with morfine because the pain was too great.

She spent most of the day in a groggy state. Couldn't talk much, hard to understand what she said. Broke my heart to see her struggle. Suspect she may have developed the same mouth sores down her throat. But hopefully we will know soon.

Dr Morris proceeded with the chemo regimine at about 4PM. I am scared, but what else is ther to do?? We are damed if we do and, well you know the rest. When I left her last night she was comfortable, groggy, no fever, swelling improved and watching Dancing with the Stars. She loves that show.

Boy how I've taken Nellie for granted all these years. We've been together married for 45 years. She was 19 and so beautiful when we met. New I would marry her when I first saw her. Then proceeded to be an idiot for so long. But she stayed with me, not that I deserved her.

Well I will try to keep you informed over the next few days as best I can. Please don't stop your prayers. Pray specifically the the chemo effects don't kill her. Pray for strength and willingness on her part to continue to fight.

See ya,
Eli

[Vera W]

God Bless you Eli and put your hand on Nellie and give her Strength!

[ESeda]

Thanks Vera, God Bless and protect you, Amen.

Second day of treatment with Idarubicin. She will have one more day of this drug then receive Cytarabine for four more days. Not sure what one does over the other. So far Nellie is not having any particular side effects from the drug, that I can tell that is. Maybe lower reds. She will receive packed red cells today after several antibiotics and chemo.

Nellie feels good today. No fever, throat much better, dry throat, BP up slightly, sugars very high but under control and says she wants to go for a walk in the halls of the hospital. Well maybe later, after tx. Keep on praying.

Eli

[ESeda]

Well it's day three. I used the wrong acrinim ATG the other day to describ Nellies' treatment. Actually it is referred to as Induction Therapy. You can Google the words and follow the links to AML and get a complete description of what she is going through.

She is doing really well. She had platlettes on Tues and Blood on Weds. CBCs are up and down. Reds are up, Whites are down and so are the Platellets. She is speaking better today but has more sores starting in her mouth and a slight fever. She is not eating well, has a pain in the stomach. Bathroom functions are OK.

We continue with the Cytarabine for four more days, then prepare for the storm. It is expected that seven days later will be the worst time frame. If we can make it through that, we have a chance. Your prayers have gotten us this far, keep them coming. God Bless you guys.

Eli

[ESeda]

We reached day four and all is going well. Red counts holding at 11.0 for the last two days, plts only dropped to 30 from 45 but the whites are at 1. Of course no nepogen will be given as long as she is on chemo drug. Dr Morris stopped by a short time ago and was very optomistic with Nellie's condition. He did say she would be feeling worse the next few days.

Some new blisters in her mouth, some nausea and pain in the stomach. These symtems are being treated with other drugs. She sleeps fairly well considering the wake her so frequently for this or that. Hopefully we can get some food down to help limit the side effects. Hate to leave her side but I have some things at home to tend to. I may leave her for this afternoon and come back later today and spend the night.

Nellie loves her nursing staff and techs. The nurse today is Carolyn, and she says that when the nurses arrive for duty each shift they argue to get Nellie as a patient. What an array of personalities but all very attentive. We are lucky to have such a good group of professionals taking care of Nellie.

Well can't think of anything else today excerpt, keep on praying.

Eli

[Neil Cuadra]

Thanks for keeping us informed, Eli. I'm glad to hear that Nellie is getting such good care.

It sounds like you are at the hospital almost all of the time. Are you taking care of yourself too, and able to get enough rest?

[ESeda]

Yes, I've been spending lots of time with Nellie in hospital. I try to go home every other day, even for a little while. She needs me now and I must take care of myself for her.

At four PM today we started our fifth day. The nurse said we have three more bags of chemo left to do. Each bag takes twenty four hours to complete. She seems to be sleeping more. She eats only peanut butter on crackers but not to much. Had a spike in fever today 100. Tylenol brought it right back down to normal. Hope she has a good nights sleep. See ya tomorrow.

Eli

[ESeda]

Here we are, the last hours of induction therapy and Nellie looks and feels amazingly good. She had more platelettes on Saturday. Her plts are holding over one hundred and her reds at nine point seven and whites at point four. She still gets new mouth sores that bleed and hurt but they are not lasting as long. She rinses frequently with Magic Mouthwas w/Litocane mixed in. Takes Tylenol with Codine for the coughing and pain, which seems to work wonders. No fever the last couple of days. Last spike was on Saturday. They took a blood culture, but no results yet.

Though we are not out of the woods yet, things are looking good. Dr Morris said this morning that tomorrow we start getting Neupogen again, to help the white cells along. Continue to monitor Nellie over the next few weeks to avoid infections and any posible organ damage that may arise. Then in twenty one days a BMB to see where we are with the decease.

I am looking at her now, half asleep, very calm and she looks so positive. She just commented that her grandchildren are her life. I know she loves and needs them to be complete. Keep on praying, it's not over yet. Thanks guys and God Bless

Eli

[ESeda]

This is day three post therapy and Nellie is having more severe mouth sores with fever. Seems like she gets fever when new sores appear. Gets as high as 102 degrees. Everytime the fever gets over 101, they do a blood culture. So far all cultures have come back negative. With all that she has managed to muster up an appetite for hot dogs and peanut butter. She can't stomach much else.

Doctor Morris said yesterday that she would probably start losing her hair in a few days. I think she has already started. She noticed more hair in her brush today. But she was ready for that. No problem she says, I can live with that! That's what we want. She had more platelettes Tuesday and more red cells on Wednesday. The Dr is keeping a close eye on her. She also gets antibiotics regularly along with the fluids she needs to remain hydrated. So far so good. Dr says her major organs seem to be operating well with no signs of problems. Some neusea and loose bowel movement but not too bad.

So keep on praying. You guys are coming through for us. Keep up the good work and God bless you all.

Eli

[Ruth Cuadra]

Thanks for the update, Eli. Sounds like Nellie is up for the fight. But how in the world she's able to eat hot dogs and peanut butter is way beyond me! I could barely eat a popsicle for weeks and weeks when I was in the hospital. Shows how times have changed and improved for patients.

Fingers crossed for you and Nellie.

Regards,
Ruth

[ESeda]

Thanks Ruth for your comments. Nothing different to report. Doing better with the mouth sores. Needing tx every two days of reds and plts. Whites running at 0.2 for the last week. Getting Nuepagen daily with no significant results. Looks like the effects of the chemo are still present. Losing some hair but not too much. We are on a wait and see attitude with the hair. To cut or not to cut, that is the question. Dr Morris says we're on schedule, whatever that means. Still not eating well. Nellie did have two bowls of cream of broccoli on Sat. Sunday morning there was a trail from the bed to the toilet. What a mess. The floor tech, Lindy, was rewarded with such a clean up. But she did her job with a joke and a smile. Great ladies working here. But they all want a warning the next time they serve Nellie broccoli soup.

Seven plus days after completion of induction therapy and all is well. Thank you Lord.

Eli

[Birgitta-A]

Hi Eli,
Nellie is very brave!

I wonder why they give her broccoli soup - can't she only have nutritional drinks when her stomac is so upset? At the famous clinics like the Mayo clinics the recommend nutritional drinks for patients with problems in connection with cancer treatment. Perhaps Nellie is already getting a supplement like Fortisip? http://www.nutritionincancer.co.uk/e...s-for-use.html (this isn’t an advertisement for this supplement only info – there are many brands)

Kind regards
Birgitta-A

[ESeda]

Hi Ruth, your right, Nellie has been very brave throughout this ordeal. And yes, I have a wall stacked with Ensure and Boost drinks that she won't drink. Don't think she likes them. But yesterday she had soup for lunch and dinner, that our oldest daughter brought. Guess what kind.... Yep, Cream of Broccoli from Subways and Crystals. She ate every bit. And to my surprise, kept it all in.

That is one ray of sunshine, the other is: Not too long ago I was warned against becoming a decimal watcher. But you know what, after more than a week of looking at 0.2 white counts a 0.7 is a ray of sunshine. And so what if I am a decimal watcher. Dr Morris said, Awe, counts will go up and down for awhile. Well I am hoping for up from here. Other counts seem to be holding too. Reds in the 9s and plts at 65. Lets see what happens tomorrow. Keep on praying guys. God Bless.

Eli

[ESeda]

Doc was right. More of the same. Whites still hovering at zero. Other counts are not dropping as fast. Today Nellie just doesn't feel well. Has a headache and fevers running about nine nine. She was eating better but not today. Things don't taste good, she complains. We are at the 21 day mark. Counts should start improving from here. Lets see if we can praythem up. Glad you are all out there caring and praying. Please keep it up. See ya.

Eli

[towncarlady]

I find the flavor of Wal-Mart store brand better. I do only the strawberry..get it really cold by putting in the freezer. It is quite tasty frozen. Open the bottle and pour into a small container for ease in serving., then freeze. I cannot tolerate chocolate because of my caffiene problems. I don't like the vanilla, but my mom likes it fine.

Best wishes!

[ESeda]

Thirty one days completed and finally WBCs at two point seven and raising. Dr Morris ordered BMB for today and said Nellie can go home tomorrow or Friday. Hurray....

Nellie still has a wound issue from when they removed he port in the left shoulder. Not healing well and is still oozing blood and stuff. Wound care nurse will see her today and followup at home.

Thanks guys for all your prayers.. Could not have done it without them. God Bless and keep up the good fight.

Eli

[Neil Cuadra]

Hooray for Nellie's white cells! It's amazing how 2.7 can sound like such a big number, but it certainly is after you've been down to zero. Please congratulate Nellie and tell her to keep up the good work.

As all of her counts rise, that should help her shoulder recover more quickly and lessen the chance for infection. It's good that you have a nurse specialist coming.

[ESeda]

We are all packed up and waiting for the final papers so we can leave for home. All the personel that have work with Nellie keep coming by to wish us well. The nurse Penny is running aroung tieing up all the loose ends, give us our discharge instructions and send us on our way. All Nellie's counts are holding. Dr Jordon repaired the wound in her shoulder, packed it after cleaning and removing the stitches.

Will need to see Dr Morris in five or six days. Hopfully Nellie's plateletts hold for a while. BMB was done yesterday and should have the results in about a week.

If you don't hear from me for a few days don't worry, we are probably still sleeping. Praise the Lord for getting us through this phase. On to the next.

Thanks guys for your prayers, and back to ya.

Eli

[Vera W]

YEAH!!! You guys try to have some fun ok? love to you both! Vera

[ESeda]

Hi all, and thanks Vera for your sweet comments.

It has been great to be home and able to rest some. Nellie visited Dr Morris in his office this past Thursday. Had a CBC done and was ordered to get plates right away (dn to 14). So between Thurs and Fri she received a 12 pack. Hgl was dn to 8.6 and wht dn to 2.0. Nellie has been feeling pretty good though. Moving around, went shopping for a bedroom set for our granddaughter and made a pit stop at Winn Dixie. Lots of sleeping being done, undisturbed. I have been practicing my cooking skills and Nellie makes me think she likes it.

The BMB is another concern. We got the results also last Thursday. Not completely happy with the results. Diagnosis: Continued refractory anemia with excessive blasts type 2, (RAEB-2). The target was zero (0) blasts, then on to transplant. But now we need to continue with what is called "Salvage Therapy". This is usually done when a patient has acheived CR, complete remission and then relapses. We have been recommended three treatments:

1. FLAG - Granulocyte Colony-Stimulating Growth Factor before, during and after Fludarabine plus Cytarabine.

2. CLAG - Cladribine combined with doses of Ara-C, mitoxantrone, and G-CSF.

3. CECA - Cyclophosphamide, Etoposide, Carboplatin and Ara-C.

She just got through Induction Therapy with Idarubicine and Ara-C, and she handled that pretty good. The worst part where the mouth sores and fevers. But what is this stuff going to do to her? I read up on these drugs, and they are rough. But which of the three will give us the results we want without having to repeat or do more to acheive the goal?

Well I hope one of you guys can shed some light on what direction is best. We see Dr Morris again this Thursday to make the decision on which treatment and when to start it. The Dr says the sooner the better. Well, Nellie is feeling really sluggish this morning. Probably needs some reds, it has been nearly three weeks since last txs. This may signal the start of the new therapy. Once she is in the hospital for a tx of reds, the Doc will probably recommend she stay to start the next phase of therapy. It means another month or so in hospital. Not looking forward to that.

Well guys, lets crank up the prayers, we are going to need them.

God Bless you all.

Eli