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  #1  
Old Thu Sep 27, 2007, 04:50 PM
mannythedog mannythedog is offline
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Dad has hypo-cellular acute bone marrow Leukemia

Hello,

I am new to the site, and at the end of August, my father was diagnosed with MDS. As his platelets continued to drop, avg of 10 per week, they conducted a bone marrow biopsy. The stains came back as hypo-cellular acute bone marrow Leukemia, not MDS.

I just returned from the doctor with my mom and pop. He received his first injection of
Generic name: Cytarabine
Trade names: Cytosar-U®
Other names: Ara-C, Arabinosylcytosine.

He has been told that he will be on this indefinitely, for he opted not going to the hospital for 4 weeks of intense treatment. Having done the research on the clinical trials, he is 76 years old, he felt he may not make it. His platelets are at 35 toady, and will drop even quicker now that he is on the chemo.

I guess what I am wanting to know, is if there is anyone with this same condition. He was a volunteer firefighter for 30 years, and an auto mechanic from the late 40's to 1992. He was involved with allot of bad smoke and chemicals used in the auto industry that are not manufactured anymore.

I am looking for time left, those in remission, and since his platelets are down to 35, should I have hope.....be blunt.

Pop is in good humor, still joking but tired.

thanks,
Scott
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  #2  
Old Sat Sep 29, 2007, 07:00 AM
choijk choijk is offline
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Always have faith

Hi Scott,
I haven't been posting as much lately but I just had to comment on your post. Please, ALWAYS have hope! I know it's a lot of information to soak in all at once, but there is always always always hope. You have to believe! I don't really know too much about the chemos for AML, but there is a forum I came across when I found out that my dad was dx with MDS. It's on the leukemia-lymphoma website

http://ubb-lls.leukemia-lymphoma.org...=30&LastLogin=

I've noticed that there are many patients on the forum that took the ARA-C. There is this one post by the user name pigduck who delves into her father's experiences with MDS , turning into AML and her father's experiences with ARA-C.

I hope this might help. I'm sorry that I can't share with you any personal experiences with any of the drugs you've mentioned. But I just want you to know that this is a wonderful forum with many people that not only care but have a wealth of information that they can share with you.

Best of luck,
June
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June, daugther. 71 yr old father dx on 01/13/07 with MDS/MPD - RCMD/Secondary MF). No excess blasts no excess chromosomes. Hypercelluar 70-80%. Low hgb. Transfusion dependent every 3-4 weeks/2pints. Began Procrit on 03/27/07. No progress thus far. Taking Folic Acid, B6, CoQ10, and Cod Liver Oil
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  #3  
Old Sat Sep 29, 2007, 08:16 AM
mannythedog mannythedog is offline
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Thank you June

Hello June,

Thank you for the reply. Pop is in good humor, but is the kind of man that will get itchy is he sits for 5 minutes. His body is eating his muscle mass, and I cut him off from the chain saw, log splitter and other extraneous activities. We live in NC Mtn's and he and mom heat w/ wood.
My sisters come and visit and help with the chores and emotional help for my wife Angie me. Even at 44 and being the youngest of 4 kids, its tough. I keep the tough exterior police chief look for pop, cause he is very emotional, but alone, well your a child too.
He refuses to do weekly transfusions when it becomes necessary, and depending on how the chemo rides, he may drop that also. He has been, and is, extremely, pro DNR and quality vs quantity of life man.
We moved near my parents for this reason 9 years ago. My wife felt we should stay near just in case. Boy is she good. I figured pop would have dropped in the field or on the mtn. cutting trees, or fall off a roof installing chimney liner's for fun cash. He never really slowed down after retirement. But for him to waste away, I was not ready for that. I'm working on it. It's been easy to joke death w/ him in the past, but to see it creep in slowly, I'm working with it.
Thanks again June, and good luck to you also. I will scan the other site.

Scott, Son of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #4  
Old Wed Feb 13, 2008, 04:11 AM
Joy in Toronto Joy in Toronto is offline
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i came across your thread and realize it hasn't been updated in awhile. i am praying for your family. my father was diagnosed yesterday with AML (progressed from MDS). we don't know treatment options yet, but it sounds like the agressive chemo is way too hard for most elderly. i hope it's working for you.

best
Joy
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  #5  
Old Wed Feb 13, 2008, 07:53 AM
mannythedog mannythedog is offline
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Sorry for not updating.

I want to apologize for not updating. This ordeal has been, to say the least, educating. I have spent many days on the net, as well as reading literature and picking up pop's chores.

O.K. enough excuses. My father is still here, hanging in. He has been on the ARA-C chemo and Procrit since late September, and neuprogin since late October. The 3 weekly shots have been slowing the progression of the leukemia. The doctor saw him in January, and was shocked to see him. Pop is quite stubborn. He days, however, have been numbered from the start.

Now the facts.
Fact #1. He did not choose the 30 day stay {aggressive} chemo, for the outcome was still going to be the same. He wanted to be at home, and enjoy his grandkids, and my mother for the time he had left; furthermore, he set some goals, get his affairs in order, and make it through the holidays. Done. He is very satisfied.

Fact #2. Pop is on his 12th unit of blood. His iron levels were already high at this point, and he is now showing external signs of too much iron. The bronze colored skin and the spots. His blood cells are tear drop shaped, even after the last transfusion, and his platelets are back in the teens again. Needed a bag this week again, only 3rd time since October because of the Procrit, but the blood bank was out. Still waiting.

Fact#3. He will never get better. He has reached his plateau back in December, and had been sliding since. He is nearing the point of having to drop treatments due to his body showing early signs of rejecting them. Once he stops, it will be a matter of weeks.

Fact#4. His leukemia was brought on by environment. Mostly benzine. Due to his past as an auto mechanic and volunteer fire fighter since the early 50's.

And finally, they had diagnosed pop with MDS in August of 2007. They then took a marrow test and said he did not have leukemia. Ten days later the stain test came in. Practicing physicians. I will not blame them. This one was tough to find, and his February 2007 blood test had no red flags. Was sleeping in him and woke up fast.

Joy, when all the tests have arrived, sit with him and let him make his own decisions. If it is MDS, you could get years. If it is worse, Pop's journey may give you a map. Be thankful that it does not hurt. Pop is sleepy allot, and is mostly aggravated due to the fact that he was Mr. out doors. Everything was a contest to him. Now he gets to see his son do most of it for him. That is the tough part.

I am thankful every day that I can swing by and see my dad. We have had "the talk", no not the one that I got in middle school, the other one. Thought I would break up the moment. We're o.k. He knows that the next adventure awaits him. He just so much enjoys being here with my mom and his family. So we make like it's just another thing. A part of life. He is o.k. with that. I'm not, but we all will loose our parents some day. I have come to terms with that. I will miss him, but savor every day till then.

Joy, if you need to talk, I will be here. God bless you and your family.

Scott.
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #6  
Old Wed Feb 20, 2008, 07:27 PM
mannythedog mannythedog is offline
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New Update On Pop

Hello,
Today is the 20th of February. My father, as last read, received platelets last week on the 13th. His levels after the platelets went to 56K. Yesterdays blood test showed them at 16. He needed more, so after todays, he is now in the high 40's. Not real impressive.

WHAT IS THE DIFFERENCE? Prior to the 13th, his last platelet infusion was two weeks before Christmas. The last two had neuprogen given the same day, instead of the day after. Am I close to something? The research that I have seen stated at least a 24 hour waiting period; however, the doctor changed it up so he didn't have to make a visit to the hospital 4 days a week. Tue, blood test; Wed, blood or platelets; Thur, chemo and neuprogen; Fri, neuprogen. Basically, Fridays shot has been given each platelet day.

Any feed back??? Any history??? Would love to hear. For all I know his body finally stopped making platelets, and his end is near, but if someone out there has experienced this, I would love to hear from you.

Thanks.

Scott
SON OF BOB
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #7  
Old Thu Feb 21, 2008, 06:26 AM
Birgitta-A Birgitta-A is offline
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Father with AML

Hi Scott,
Your father is admirable!

I am afraid I don´t know anything about how Neupogen may affect platelet transfusions. There are several drugs coming for low platelets. The first drug - Nplate/AMG 531 will hopefully be applied by FDA before summer 2008 for Idiopatic Thrombocytic Purpura. Perhaps your father could get it "off record" because Nplate is tested for MDS in phase I/II trials.

http://professional.cancerconsultant....aspx?id=41054

Kind regards
Birgitta
68 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusion every 6th week and Neupogen 2 injection/week
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  #8  
Old Sun Feb 24, 2008, 06:14 PM
mannythedog mannythedog is offline
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UpDate

Hello,

Pop is getting tired, and more winded. Last night at supper he was dizzy, and yesterday morning after having syrup on his waffles, he got dizzy. He now has to watch the rich and high in sugar foods. I am afraid that his platelets are going to be low again this week, and his red cells have taken on a "tear drop" shape. This, I have read, is causing the anemia, and maybe his dizziness.

I will keep writing what happens, as I will hope it will act a a guide for those that have family, or themselves that may have it. He is not in pain, just discomfort after the shots. {see past posts}

More later.

Scott
Son Of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #9  
Old Wed Feb 27, 2008, 08:04 AM
mannythedog mannythedog is offline
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New Pop Update

Pop went and received more platelets, and a unit of blood yesterday, 2/26/08.His count was lower than last weeks upon completion of Tuesdays blood test. His white count is also down, under 1.0. To get my thoughts on this, read the past inputs I have written.

Pop was real tired this past weekend. He is also swelling. His mid section is at 44 inches. He used to have a 36 waist. His copper color has subsided a bit, but with the fresh blood yesterday and today, he also gets a neuprogin today, his copper tint may return. I would only hope that the blood transfusions don't increase, because he can not handle the iron. It has been 4 weeks since blood, one week since platelets. One unit each week for the last 2 weeks. He, in the past, would give blood in a regular basis to keep the iron levels down.

Pop had his lobster tails this, last weekend. He was real happy. We figured he would need blood, because the syrup in his waffles on Saturday morning and the steak and lobster on Saturday night, mad him very dizzy.

He is getting a bit down, it has taken longer than he, and the doctor has predicted, and he is anxious. I wish I could help him, but I will just be there for him. Not really much more that can be done.

He goes to see Dr. Shay tomorrow. Will add to this post if anything changes.

Once again, Angie and I love every minute we can see him, and Belle, our daughter age 6, adores him. Pop gets a hoot out of Reagan, our son, 2 1/2. I just hope he remembers something of his rough and gruffy grandpa.

In closing, I fear his bone marrow has stopped producing to keep up with the deficit. I will continue to write, so we can keep a history of his progression. I hope this helps others. Please let me know.

Scott,
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #10  
Old Thu Feb 28, 2008, 05:23 PM
Ruth Cuadra Ruth Cuadra is offline
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Dear Scott,

It's so generous of you to record your father's experience for those who end up on the same path in the future. He's a lucky man to have you out here looking for information and options for him and to have his family nearby.

Do you know what the cause of his swelling is? Often it is the result of congestive heart failure, which in his case might be the result of his having to deal with decreased hemoglobin over a long period of time. Lasix can help reduce the strain on his system from so much fluid and make him more comfortable as well. Is it possible to increase the frequency of his transfusions so he doesn't get so low that the shortness of breath and weakness are so difficult to deal with?

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #11  
Old Sat Mar 1, 2008, 12:29 PM
mannythedog mannythedog is offline
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Pop's Dr. Visit 2/28/08

I took pop to the Dr. Today. He insisted on driving. He does well, but it tires him greatly. I guess him being from the driving generation, he still likes it a lot. I, on the other hand, would prefer a transporter. Star Trek generation... Oh well.

The Dr. was surprised to see him, yet again. The outcome will still be the same, but it still gives the Dr. a meter to go by. Pop is a bit unusual, and is actually growing hair at the chemo injection sites. I will say, he is a bit odd.

I used to treat every Friday as a completion point, you know, end of week, pay day, the ensuing "honey Do list". Now it is every Tuesday. Pop's blood test results. How’s the platelets, the RBC'S, white count? Will he need platelets this week? Blood? As you all know, he had blood 3 weeks ago, and this week. Two units each time. He also received platelets each of the last two weeks. One unit each time. This is all on top of the weekly injections.

The Dr. Stated that he can go indefinitely this way. He even has patients that get two transfusions a week. Pop won't be game for that. He will stop if it becomes more frequent than one a week. Pop at this point is one step forward, 2 steps back. He is getting, somewhat, depressed. That is why no one argues with him driving. He enjoys the trips taking mom to the store, yes he sits in the car, {mom leaves the window cracked} Ha, Ha. He also drives himself to the visits to the hospital. Its only 5 miles each way, and we're in a rural area. Until he gets so anemic he gets dizzy sitting, I will allow it. Sounds so mean of me to say that. At what point do we children allow ourselves to make decisions like that?

Pop is a rock, but not an island. He will be missed by most, and is loved by many.

I will keep you posted on his progress.

Scott
SON OF BOB
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #12  
Old Sun Mar 2, 2008, 03:40 AM
Chirley Chirley is offline
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when children become the parent

I know what you mean Scott. I'm the one with the illness, not my father. He has a minor heart condition but is otherwise a fit and able 80 year old. He drives almost every day in city traffic. I've noticed the last year or so that his driving is becoming quite bad ( having said this, he has never been particularly good ). He doesn't want to be seen as a slow, indecisive old codger, so he goes faster than he should and takes risks that he shouldn't. I am very reluctant to say anything to him because he is such a proud, independant man and I think that losing his ability to drive would be devastating to him. I'm worried that he will become dangerous to himself and OTHERS and how to tell him gently. It almost feels arrogant to think of myself in the position of being judge of my father. One of lifes' tribulations, I think. Chirley
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  #13  
Old Mon Mar 3, 2008, 01:32 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by cme01 View Post
I'm worried that he will become dangerous to himself and OTHERS and how to tell him gently. It almost feels arrogant to think of myself in the position of being judge of my father. One of lifes' tribulations, I think.
Here in California, the Department of Motor Vehicles lets you report someone you think is no longer a safe driver, and ask them to keep the source anonymous. See Medical Conditions and Traffic Safety.

Reporting them this way doesn't solve the problem of their losing independence, but it can help get an unsafe driver off the road, for their own protection and for the safety of others, without the driver necessarily blaming their family. Nevertheless, it's an awkward and unfortunate situation.
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  #14  
Old Tue Mar 4, 2008, 04:00 PM
mannythedog mannythedog is offline
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Pop's Blood Test 3/4/08

Pop called me at work this morning. His platelet count was 15. He had received a bag last Tuesday {7 days ago} and he was at 48 after the re-fill. This makes 3 Weeks in a row. His hemoglobin was 9.1. He got two units last week, and went to 9.7. So .6 points in a week. I fear that his bone marrow has finally stopped producing. That along with his blood cells having the tear drop shape, doesn't look good. I guess I am trying to put a time line on this whole thing. If the math works the way it has in the past, I would think he will need a blood transfusion next week, along with a bag of platelets.

His spirits are low today. I would expect that. He has planned on dying for a few months now, but it has taken a toll on him. I can now see through the happy face he puts on for me.

I will take my kids to see him. Ol' Pop needs hugs. I'll give him one too. Lets not forget mom either. She is having a tough time. I wish I could get her to communicate with other, long time married, women that have had lost a partner. She is very private.

Thanks for the response, and support.

Scott
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #15  
Old Tue Mar 11, 2008, 05:57 PM
mannythedog mannythedog is offline
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Pop Update 3/11/2008

Hello all,

I hope all that read this post are doing well.

Pop had his blood test this morning. Like I said in previous posts, my week runs Tuesday to Tuesday. His hemoglobin was just at 8.5 ( they want him to go another week; gonna be rough on him) but his platelets were 13. I guess it is safe to say that after 4 weeks of platelets his bone marrow has shut down. I was not surprised to hear this news. He has been using a water pick to clean his teeth, and the other day, it made his gums bleed really bad. He also dropped a piece of fire wood on his leg, and he would not stop bleeding for almost half an hour. I scolded him for moving the fire wood. He knows I handle it for him and mom; however, I hear tell, he has been sneaking tractor rides thinking i don't know about it. I guess it's his turn. Lord only knows the sneaking I thought I was getting away with. I guess we are our father's sons.

Easter is in 2 weeks. He really enjoys lamb with pear half's and mint jelly. I put in an order for him. Boned and rolled with no skin. Just the way he likes it. I'm glad my kids get another big dinner with him. Just maybe, my little boy will remember him. My little girl, see last post's, is doing a lot of snuggling with her Pop. She understands. My only other issue with her is explaining cremation. Any suggestions on how to explain it to a 6 year old? I was thinking of showing her Star Wars 6. She really enjoys star Wars. Darth gets cremated in the end. may open up a discussion.

Oh, in closing, I would love to post a picture of him. Does anyone know how? in the mean time, you can see him, and us on http://www.myspace.com/schultze1963 all are more than welcome to view.

God Bless All.

Scott
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.

Last edited by mannythedog : Wed Mar 12, 2008 at 07:17 AM.
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  #16  
Old Mon Mar 17, 2008, 10:06 PM
mannythedog mannythedog is offline
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Pop Update 17 March, 2008

POP UPDATE 17 MARCH, 2008
Hello,

I know that I am a day early with the Pop Update, but he was feeling really bad this morning. One of the few duties he has kept around the house is tending to the wood burning heater and doing the dishes after the meals. While he was doing the dishes this morning, he got really dizzy and lite headed. Mom had stated he looked pale when he got up; however, he continued his routine. Mom made him sit down and called the hospital.

The hospital performed his blood test one day early, and his Hemoglobin was at 7.5 and his Platelets were 13. He is scheduled for 2 units of blood and one unit of platelets tomorrow {3/18/08}. This should give him a boost for a while, but I fear that the need blood transfusions will be more frequent, sooner than later.

Now The Good News:

The blood drive for Pop is on for May 1st, 2008 at the local Ingles in Murphy, NC. from 2 pm to 7 pm. I had tried to get his church to sponsor it, and mom attempted to get the pastor to give dad a communion around last Christmas, well, the church, and the woman they appointed to head the project dropped the ball on the whole shooting match. I had all the leg work done, all I needed was a sponsor with a parking lot. Well, God did answer prayers. My wife Angie was talking with her friend Angie,{I know, I know, it can be confusing}, about the difficulties over the last 2 1/2 months getting things put together, and in less than a day, the other Angie, got the blood drive put together, and sponsored by the Murphy High School Bull Dogs Quarterback Club; furthermore, her husband Kenny is a pastor at the Maltby Baptist Church. He felt it would be a honor to go to my fathers house and give him communion with his family on Easter Sunday after church. So, with just a mention of issues, every thing got handled in less than a day by people that care. That act of kindness gave my father such a boost.

This evening I stopped by after work to talk with him, we average 5 nights a week, he looked rough, kind of like he just run a marathon, but his spirits were up. He said he told the nurses at the hospital that he needed to hang in for Angies graduation in May, my wife went back to school, and what had transpired with the blood drive, and the nurses stated they were going to hang up posters to notify everyone. He was very humbled by all the people that really didn’t know him to step up to the plate to support him.

My father has been, and is a very proud man, one that did all the planning and organizing for people in just his condition. I told him to relax and let someone else do the driving for a change. "Pay It Foreword." I get it.

I would like to take this opportunity to thank my beautiful wife Angie for her devotion and caring for my father; Kenny and Angie White for being there and being such good friends; B.J. Thompson, President of the Murphy Bull Dog Quarterback Club for being who she is; Kimberly Wheeler of Blood Assurance of Chattanooga, TN for being so patient; Ingles of Murphy NC. for the parking lot; My employers for being so understanding and All of those that are willing to bleed for my father and everyone else who needs your help.

It’s not until your a part of something like this that you realize there is just not enough blood donors. I have had such an education. I am sorry that it had to be under these circumstances, but the need is there.

GIVE PLENTY, GIVE OFTEN.

Scott

Proud to be
Son Of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #17  
Old Mon Mar 17, 2008, 10:38 PM
Neil Cuadra Neil Cuadra is offline
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Blood drives do deserve more attention, Scott. When someone donates blood, everyone wins. Obviously, those who need blood are the direct beneficiaries, but the donors get the honor of helping somebody else, whether it's a friend or a stranger. And the whole community wins when people support each other in such a personal way.

Bob may get as much from the good feelings directed his way as he does from the blood collected on May 1st. And if not all of the blood has the blood type he needs, or there's more than he needs, the rest will go to others in need.

Do you have a plan for spreading the word around about the blood drive?
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  #18  
Old Tue Mar 18, 2008, 07:30 AM
mannythedog mannythedog is offline
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Hey Neil,

Neil,
Blood Assurance, out of Chattanooga TN. is handling all the advertising. a month prior, they will send posters to us, as well as, articles for all the local news papers and radio stations. They will also send out mailers to the "frequent bleeders" that are ready to give so they may also attend.

I will be leaving work early that day so I can be there to bleed and help out. I was going to give platelets, but the busses are not equipped for that. Platelets are in great need, and have a very low shelf life. My father and I have also noted that, prior to his getting worse, he went longer on fresh blood than the out dated stuff. I have done some research on this, and found it to be very possible.

Thanks again for your, and everyone's support. I wanted to let you know that my father has friends that live far away, but go to this site for updates. Thank you for being here.

Scott

Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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Old Tue Mar 18, 2008, 08:05 PM
mannythedog mannythedog is offline
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Pop Update 3/18/2008

Just a quick update and addition to yesterdays post since Pop went early for blood this week.

Pop got his blood and platelets today. His hemoglobin only went to 8.5. They usually give him blood at 8. He was at 8.5 last week. His platelets rose to 54; however, you have to remember that the 2 units of blood also have platelets in them, so he got a "piggyback" of platelets in the whole blood. He was a little discouraged by the numbers, but understands that he is on the down swing. We had a long talk last night about...stuff. He is o.k. It's just tough acting o.k.

He looks much better, but is tired. It was a long day at the hospital. He is looking foreword to his lamb and mint jelly this weekend.

More later.

Scott
Son Of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #20  
Old Wed Mar 26, 2008, 07:46 AM
mannythedog mannythedog is offline
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Location: Marble, NC
Posts: 103
Pop UpDate 3/26/2008

Hello,
Blood tests came back Tuesday. He will need platelets {15 now, already having issues with clotting}; however, due to the shortage here, they said he'll have to wait.

I will have to say that he is now on them weekly. It has been over a month, and each week he has needed them. He has taken precautions to keep himself from bleeding, and has turned down the water pick and moved to an electric razor. The hemoglobin was about 8.5. The Procrit is still doing its job, but from the looks of it, he will need blood next week. I don't think they will force him to stretch it out again, due to how bad he has felt when it gets too low.

He had his Easter this past weekend. Another goal he has set for himself. The pastor did a great job with communion at the house, his first in-home, and pop really enjoyed his Easter dinner. He has to curb his appetite on the rich stuff. The low blood count and anemia is making him dizzy when he eats rich foods.

His next goal is to see my wife graduate in May. She had gone back to school for a business degree, {she works in the medical billing field since 1994, so any questions on insurance/Medicare/Medicaid just ask} and he really wants to be there to cheer. Boy, they sure do love each other a lot. Could I be any luckier.

Goals. Never thought much about them. Have set them, met most of them, even made a few, ha, ha..... but when you see someone that uses goals to define what time is left in life on earth, kind of changes your perspective. Makes you want to try harder to create more, because you don't want to be caught without having any. I have realized that goals define who we are. Setting goals makes us strong, and not meeting them while giving our best can make us stronger. So I try harder next time... right?

Pop is in good spirits. He had a chance to see most of his family over the past weekend. Sure, some live very far away, and some are out of the country, but ALL did call and talk with him. He is special to us all.

More next week.

Scott
Son Of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #21  
Old Wed Apr 2, 2008, 07:49 AM
mannythedog mannythedog is offline
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Location: Marble, NC
Posts: 103
Pop Update 4/2/2008

Hello,
As we all know, see last post, pop did not get his platelets last week. He went in for his blood test yesterday, and his hemo was down to 7.8 and his platelets held at 15. His white was at 1.7. The Neuprogen is doing its job; however, I feel the Procrit is failing. He has been getting severe headaches this past week and he has a terrible pain up the left side of his neck to his inner ear. He also has developed a "metal" taste in his mouth that gets worse every week. Chemo? He has had a loss of appetite since Sunday, has been doing a lot of "restless" sleeping since Thursday, and has also developed a gag response to his face mask. It made him vomited yesterday on the way to the blood test. He stated it had a smell he's been noticing lately. Mom is looking for alternate masks.

His driving is becoming a private issue with my mom. We talked yesterday. He likes to drive her to the store, hell sit in the car and wait, and to his appointments. Last Friday, Neuprogin day, and the day after Chemo, he has had issues. She stated they were things pop would never have done. {pop taught drivers ed for several years for the AAA when he was in his Early 20's} I wanted to talk with him, but she said she will see how he does this week and make a decision. I worry for the two of them. Maybe make a compromise, and let him drive on "non-shot" days.

He is supposed to get 2 units of blood and a bag of platelets today. The hospital has not called yet. I heard on the radio this morning that there is a major shortage in this area of 0+ and platelets. I hope he gets a call today.

Belle, my 6 year old girl, went up to see her grand pop Monday after school. He wasn't feeling well, and slept most of the day. He woke up for her and then the two of them snuggled on the love seat and fell back to sleep. She loves her grand pop. I feel he has hung in this long for her. They really enjoy there time together.

I will update ad usual, and I hope this helps others.

Scott
Son Of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #22  
Old Tue Apr 8, 2008, 02:12 PM
mannythedog mannythedog is offline
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Pop UpDate 4/8/2008

Hello again,
Well, go figure. Pop had such a bad past couple of weeks, I thought that I would soon be telling you of his passing; however, he got a double pump, blood and platelets, last week and had such a reaction to it Wednesday and Thursday, hot and cold sweats, head aches, chills, nausea and not being able to sleep, well Friday morning he woke up early, told mom he was hungry and ate breakfast. Went for a hair cut and took a short nap. Felt good Saturday, and Sunday was slipping a little, but it was such a nice day he got on his tractor in the early afternoon and pointed out the needed yard work, not that I wasn't already doing it, but I did humor him. I installed the mower deck on his Steiner tractor so I could mow on Monday after work, and he did it. I scolded him a little, because he could have gotten cut, but he said he would rather die on the tractor than in a chair or bed. Touché'

He got his blood test today, and he needs nothing but chemo and his Procrit and neuprogin shots. Hemoglobin was 8.7, platelets 23 and white count 1.3. Not to shabby, considering he has been getting platelets for the last 5 weeks. He did mention that the platelets he received last week were the yellowest, fattest bag he had ever seen. I guess someone out there has super blood. Thanks. Pop really needed the boost.

I am worried about his progression, and after this high, how bad will he take the next low. I, and my family will enjoy the high while we have it.

Hope all here are doing well.

Will keep up dating.

Scott,
Son Of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #23  
Old Wed Apr 9, 2008, 02:07 AM
Chirley Chirley is offline
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Fat blood bags.

Hi, pleased to hear things are going better. Also good to hear someone else has noticed the difference in volume from bag to bag. I know platelets are different to RBCs but the packaging is the same. This last time I had my blood transfusion the bags of blood took forever to be infused (over 24 hours) and the nurses kept commenting that they had never seen such fat blood bags. Sometimes the bags have 230-240 mls in them, this time every bag had in excess of 300mls. I think some of the volume must have been white cells though because they usually change the leukocyte filters after every 2nd bag. This time the filters gummed up after every bag and had to be changed because they wouldn't let the blood flow through. It makes you appreciate that they use the filters because I wouldn't like to think of the reaction I could have had to that number of white cells otherwise. Best of luck to you and your Dad and I hope that things stay on a plateau for as long as possible.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
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  #24  
Old Tue Apr 15, 2008, 04:33 PM
mannythedog mannythedog is offline
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Pop Up Date 4/11/2008

Hello all,
Pop came down from his high about last Thursday. he slowly fell into his low over the weekend, and was really tired last night when i went to see him. This morning he got his blood test, his platelets dropped to 12, his hemoglobin to 7.7 and his white count is hanging at 1.2. I am glad for that, because his last transfusion gave him such a reaction, it had mom scared. I am afraid he may be rejecting the blood. if he gets a refill tomorrow, I'll keep you all posted.

Belle has been with pop this week due to spring break. They have been doing the 100 piece puzzles. It amazes him that she will put one together from the bottom up. Today they are starting a 350 piece. Pop is excited. They nap together, and Belle has remarked that she enjoys her naps with her Pop. I am glad the dad gets to spend time with her. Time that she will remember.

Don't feel real talkative now, but will write more when i have more info.

Thanks.

Scott
Son of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #25  
Old Thu Apr 17, 2008, 07:56 AM
mannythedog mannythedog is offline
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Join Date: Sep 2007
Location: Marble, NC
Posts: 103
Up Date 4/17/2008

Pop received his transfusions yesterday. 2 units of blood, one platelet and a neuprogin shot. The nurse had an issue with his veins. He has developed scare tissue from receiving the transfusion, that they are considering installing a port. I have seen them, but don't know much about them. I am sure the nurses will cover care with him and mom, but should there be any other things I should know.

On another note, his numbers did not come up quite as much as we had hoped, so I guess well see next Tuesday. He compares each transfusion with the last, and this did not have the "boost" the other had. He gets chemo, Procrit and the 2ND neuprogin today. He'll be out till Saturday, then we'll have an idea what to expect.

He is glad he'll be here for my wifes graduation. One of his goals. He is now setting another one. It is on the 1st of august. 56 years w/ mom. Wow. The joke is mom's a saint. Pop gives us a hardy, ha, ha. Good to know I can still mess with him. I do miss so much the times we worked together.

Scott

Son of Bob
__________________
Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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