Dad has hypo-cellular acute bone marrow Leukemia

[debbie2008]

first, and most importantly, my deepest sympathy to you on the loss of your dad. as much as we try, we are never really prepared for the finality of it. my prayers are with your mom, your wife, daughter and family. each one is hurting and i pray for their strength.

you are truly a gift to all on this forum. i feared the day your dad would pass and your voice would be silenced. now, instead, you offer us more of your insight and experiences. i don't know if you realize how much we have depended upon you and how close to you we have become.

yes, we want to know all. we are all one in this experience yet we are all not capable of doing what you do. you can share while i choose to hide. i don't know if it is because of my pain or it is simply who i am.

but you have become family and we want to know your story...how mom survives...how belle adjusts...how you mend. we want to know everything you are willing to share. we are so blessed that you are offering.

i am fortunate to have many supportive people in my life, yet it is you, a complete stranger, that gives me strenth.

there is no sufficient way to thank you.

may God bless you and yours always.

[run4peach1]

As I am preparing to leave to go to the hospital to see my father (age 78), I was reading this thread. After many tears, I decided to reply.

I fear my father may be on the same course as your Dad. After one treatment of vidaza and two of dacogen, his counts have just crashed. White cells and platelets at critical levels. He was just diagnosed with MDS after years of battling a high platelet count. I pray that, as the doctor said, this crash is most likely caused by the dacogen (chemo). I fear that his marrow has just shut down.

I also have a 2 and a half year old. My daughter adores her pap pap, and the feeling is very mutual. I don't know how to approach that yet.

My thoughts and prayers are with you and your family, along with everyone else suffering in some way. May the New Year bring you Peace and strength.

[mannythedog]

Hello all, and Peach, I sent you a personal.

It has been just over a week and we have entered a new year with out Bob. It's tough not seeing his fuzzy, white head sticking out from his chair, the head he claimed for years was not a comb over. Belle and my wife also find it tough; however, it gets easier each day due to the chores that keep our minds busy. I have not been in his shop yet. Not ready to do that.

Mom and I went to pick up Pop on Monday. I took a half day, and the boss told me to take her to lunch. I was expecting more at the funeral home, I don't know why. It was very business like. A box was passed to mom, she handed it to me. It was kind of heavy for her. We said our thank yous and left.

I asker her if she wanted lunch, and she said that would be nice. I took her to a local establishment and we sat and talked about pop, among other things. { I left the window in the car cracked} It was the first time in almost 10 years that we had a lunch alone together. Had many w/ pop around, but he needed her presence 24/7.

On the way home, we took a newly constructed road that pop always wanted to drive on. I made him sit in the back seat. We told him how it was, the pretty view of the mountains and how smooth the asphalt was.

I know he was not there, but the human in us alway likes to think otherwise.

He is now on his end table on what was his side of the bed. I have not been in the room since I set him there. Later. Maybe when I go into the shop. Maybe I will make him a nice box out of cherry or walnut. He would have liked that. I'll clear it w/ mom first.

That is pretty much it. We cope, and fill the hole with work, kids... you know, busy stuff.

I'll keep you all updated. They say the pain passes. I am sure it will. I'll just keep filling that hole with my family and the love we share and the memories of pop.

Thank you for letting me share.

Scott

Son of Bob

[mannythedog]

It will be 3 weeks since Pop's passing this Tuesday. A few things happened that he and I would have teamed up on, and one in particular comes to mind. We had a real heavy rain for about 4 days, thought I was going to have to build an ark. A large pine tree up rooted due to the wet soil, plus being on a hill did not help either. It crossed the driveway. This would have been a project that Pop and I would have done together. The bickering of how to do it, who was correct and why are the chains on the saws dull, poor mom looking on wondering why we have not finished it yet. A three hour project, at best. Well my son Tony was still here, and the large job it was, I recruited him. It went fairly quick. he did the grunt work, I cut, there was no bantering of "how too" and my mom and I teared up when it was finished. A 2 hour job. We missed the hour extra.

Last night was the first dinner at mom's since all the family went home. Payment for the tree, and it was her famous spaghetti sauce. I plopped down in Pop's chair, and we were talking before dinner and my 3 1/2 year old asked where Pop was. That finished my wife and I. Mom explained and gave me a kiss on the head. She is a tough one. I performed Pop's chores, dishes and teasing, but not the same. Going through the motions.

When Pop lost his dad, he lived 300 miles away. We went to the funeral, and went home. It's different when a child stays near the parents home. Everyday is emotional. I know it will get better; however, I need to feel the hole. Without it, I fear I will loose my emotions for Pop.

Mom is excited. A bitter, sweet adventure awaits her. She is going to visit my sister out east. About a three hour drive. She and the dog leave Friday. This is the first mission she has taken on by herself in 55 years. I said "GO!" Have fun with your daughter #1. A five day trip. She will do fine.

The neighbors have been great. James and Clara in back, "look up mountain folk in Webster's, see picture" , have been so helpful and kind. My employers have been so patient, as have Angie's.

Pop is still on the end table waiting for that spring Saturday to drift on the wind. I will work on my banjo some more. Maybe I will play something for him. As far as the nice box, mom said he would not want it. He was simple, and cardboard would have suited him just fine. I'm o.k. with that. Pop. Short shirt, men's bikini bottoms, floppy hat and a good day to sail, or mow.

Simple.

Thanks.

Scott
Son Of Bob

[mannythedog]

First, let me thank you all again for allowing me to post my fears, joys and the love that I had for my father. It has been over a month now since pop passed.

Mom returned from her trip and was very tired, but relaxed. My sister and her did fun things together, and my sister also talked her into helping paint her kitchen. Knowing my mom, she enjoyed every minute. We are talking more openly about Pop now, mostly as things arise and we say how Pop would have handled it. Overall, mom is going to be O.K. She is a survivor and an adventurer. She has even demanded taking her old chores back since she isn't in the house all the time anymore.

At 74, and a breast cancer survivor, she is ready to explore the world without Pop. That alone is an adventure; however, he is here, watching. Everything I do around her property, and even things in my own life, are a refection of how Pop would have done it.

Finally, I was really bummed for a while that I did not dream about him. Last weekend, I finally had a dream not about him, but with him. He was in his usual place in the living room and I was in the adjacent chair. We were talking about spring, and how I needed to prepare for the duties around the property. He also mentioned that I needed to be sure mom kept up with her doctor visits. At the end of the dream, or as I now classify "the visit", he told me every thing will be o.k., and he is good. "Everything here is just as I expected... Beautiful."

In closing, I will be here for any questions pertaining to Pop's journey and hospice care. All you need to do is ask.

My prayers to all the patients and care givers. Keep your family close and your faith closer.

Love to all

Scott
SON OF BOB

[mannythedog]

Hello all.

It has been five months the 23rd since Pop passed, I have been watching and keeping track of you all. I bounce in from time to time and read the posts. I don't feel comfortable commenting, due to being out of touch with treatments since fall of 2008. I am sure things have changed.

I wanted to give you all a "Mom Up Date". Wow, what a gal. She took about a month to roll into action, painting, having me repair things around the house, etc. Then spring hit, and I tilled her gardens, nd she and my wife planted a victory garden to offset grocery costs. She has been busy.

I took her to see Star Trek for Mothers Day, our first official date alone ever. It was nice. She got me hooked back when the first episodes aired, and I have been, "no laughing aloud" a Trekkie ever since. She had a ball. We went to supper after and talked for along time about Pop. She has never been alone, and yes, we are just up the driveway, but she is enjoying discovering herself. She misses her daily things her and Pop did, and the adventures they would take, but she is also coping and realizing that she is stronger then she thought.

We talked about fathers day, and how I would be the Only father now. I don't really know how deal with that yet. It will be strange not to plan something for Pop this year.

All I can say for sure, Pop would be proud of her.

With summer approaching, we have been on top of the property work. I finally found somebody that wanted the hay growing in the field. Will take 2 weekends of bush hogging of my schedule so we can concentrate on this next winters heat for mom. She has plenty of wood for this coming winter.

I knew mom would be alright, and when people ask, I tell them. They seem a bit shocked that she is not rolled up min a ball in the corner, but mom is a fighter, and Pop knew that. I guess that is one of the many things they had in common.

My friend Del and I talked for some time about Pop, and he asked how I was. I summed up his journey in one phrase, "Pop showed me how to accept death with courage and honor." He also asked about Marrow Forums, and he stated he had not seen a Mom update. He said I needed to post one, so I am.

Oh, you can take this one for what it is worth, but I had a visit last week and Pop was going through the usual chore list. He did mention that mom needed to keep her appointment at the Dr's next month, and that I should remind her. Well that morning, I did nit think much of it until I saw mom that afternoon after work. I told her pop had said to make a Dr. appointment, and she said she had one in June. Funny, I did not know that. So, like I said, for what it is worth.

In a nutshell, Mom is doing o.k. And with #75 coming in August, she is still strong to go.

I think about all of you everyday, and remember you all in my prayers. I figure when the posts stop, the time has come, and I feel sad; however, I am glad to know that all are sharing, and that is what makes this site special.

Marrow Forums and participants, keep up the good work. Don't forget RELAY FOR LIFE. This year I will have a candle for Pop, Mom, Betty "mom in law" and one special bag for all of you "Marrow Forums".

God's love to all

Scott

Always Son Of Bob

[debbie2008]

thank you so much for the mom update -- it was just what i needed.

my husband died as a result of his mds/mpd two weeks ago. although i had subconsciously prepared for it since he was diagnosed (18 months ago) it is so overwhelming. my children, although grown with their own kids, are devastated. their grieving is naturally compounded with their concern for me. i am surrounded by wonderful people and did not want to see my husband suffer. the last week was extremely difficult, and the ending was a blessing.

i have often thought of your postings and have wondered how everyone was doing. you update was a prayer answered. you have once again given me strength and i thank you for your insight and compassion. your mom is an inspiration.

marrowforums is truly a gift. without it i would have not been prepared for what i have experienced. the knowledge and optimism gained from it was a daily bolster for me. i too pray for all the members. outcomes are so variable and there is always hope. i wish ours was different, but it was not to be.

i am just so very sad. i do know that what has happened was the best for him -- and it was always about him. but the sadness is so very painful.

our world was turned upside down by a disease we had never heard of. i feel they are so close to a cure and will pray every day that we will all see it.

again.......thanks for the update and my best to you and your family.

[mannythedog]

I know the good old "I'm sorry" does not help fill the hole left by the ones we love when they travel on to the next adventure, so I will tell you what Pop told me before his leaving.

"Scott, it is not about me, it is about you, your mother and everyone else. I had my time, my fun, great kids and woman that I loved with everything I had for more than 55 years. Live, love, rejoice, have faith and enjoy your family. Mom will do just fine." And she is.

Go figure, he was right. He liked to do that. Be right all the time. I guess it is a Dad thing.

Debbie, I won,t say I'm sorry because it is so cliché', so I am going to manufacture a new term. "What Pop said."

You have family, you are loved and I know your husband is with you. People say it is my sub conscience working, but I know better.

Good life Debbie, and believe me when I say, we all are thinking about you.

Scott.

Son Of Bob

[mannythedog]

Hello all,

Friday night we, my wife and kids, went to the Blairsville Ga. Relay for Life. I was impressed at how well it was put together. So many people touched by many forms of cancer. So many survivors that beat their sickness, so many love ones there to honor those that had not.

It was good to see the ones that are making it and those that are multiyear survivors. I was sadden by the little ones wearing the purple survivor shirts, yet happy that they were there to wear the purple shirts. I met real nice people, and everyone was glad that everyone else was there. We all shared something. Care givers, patients and survivors. We were connected by the fact that someone we loved was in remission, sick or gone.

My wife, who works for the hospital in Blairsville, was helping set up the tent they were sponsoring. My kids and I met her there. When we got to the event, we walked around the field to see what was happening, and bought two luminaries, one for my father and one for all of my friends at Marrow Forums. I could not help choking up when as I was giving the girl my father’s name and the Marrow Forums name to put on the bags. {you all will have to forgive her spelling. I did not catch it until it was too late} It took a few minutes and she did not seem surprised the 6’5” bald man was having an issue. We had special shirts made up for the kids with a picture of them sitting with Pop. Under was the caption, “We walk in memory of Pop,” and, printed on the back was, “Grandma and Nana survivors.”

We all took part in the program, and we did a walk with the hospital group and the kids had a special walk in honor of a child that had passed away. There was also a special ceremony for the lighting of the luminaries that had my daughter Belle crying for her grandpa. She kept sobbing how much she missed her Pop. It touched many people and I got many reassuring smiles. Yes, he did leave a big hole, and it still hurts. She had my wife and I wet eyed also, not that I was already having a problem keeping my “man stuff” in check. At the end of the ceremony, they had special luminaries that they lit as small hot air balloons. It was wonderful to watch as they rose and caught the wind. We could see them sailing off into the night. It looked like a train of lights ascending to heaven.

It has been six months the 23rd of June since Pop departed on his journey. I know it will get easier as time goes on, but I still miss the projects we would do, his advice {even though I half listened} and our talks. I will never get used to being the Patriarch and saying the family prayers at get together’s, and being the one the neighbors ask about mechanical questions. It has always been Pop.

I will sign off now. I wish I could attach the pictures of the kids and the luminaries here, but I cannot. They will be in my picture section at my MySpace account. Just hit the link below.
myspace.com/schultze1963

You all are in my prayers, and in my heart. Hope, Cure.

Scott
SON OF BOB

[mannythedog]

Hello,

A lot has happened since the Relay for Life Post. August is a busy month in the Schultze clan so Mom had an Anniversary, and her and Pop's birthday without him. It was a very sad time for her and we talked about stuff, funny and sad and she kept herself busy through it all with chores, but I know the evenings and nights are very lonely for her. The kids, Belle especially, fill her afternoons after school, and I see her every weekend for chores.

She has been finding herself, and has been making short trips to see my sister Sue, 3 hours away. She has one coming up this month, a dog show with my sisters lab's.

Pop is a everyday thought with me and my family. I get accused of doing "Bob things" and acting "Boberly". That is o.k. I can live with that. We are, like I said before, a product of our parents. I can hear it in my laugh at times.

The tractor went down again yesterday when mom and I were fixing the driveway. Retrieving stones from the 10 plus inches of rain we had from the right of way. Well, the main hydraulic hose blew. Had to tow it back to the work shop. Mom said pop knew that was going to happen some day. She also said he was probably getting a good giggle out of it too. I tend to go with that thought.

I check the posts regularly, and look to see if some had beat the odds or have not. Have not seen much in either one, so I will take that as no news is good news.

It will soon be a year, 23 December, since Pop left on the next adventure. Belle wanted to do something special. I thought of writing some notes, and tie them to balloons. Not original, but if they clear the mountains, it will make Belle feel good. I will pray for a calm day.

Prayers to patients and care givers. Love and try to understand what each is going through. It will make bad times better for you. Don't forget to ask questions and ask for help

Hope, Cure.

Scott
SON OF BOB

[Ruth Cuadra]

Hi, Scott.

Thanks for touching base with us. It's good to hear that you and your family are finding your way together. In connection with your idea to write notes to your father and tie them to balloons, I thought I'd offer another idea: get some pinwheels -- the kind with a stick that kids can hold and blow on to make them them spin. Everyone make a wish and then blow on the pinwheel to carry their thoughts away. At the cemetary where my father is buried, I often see pinwheels on the graves. Makes me feel happy to think that children visited and were shown a way to connect with a loved one that they can understand.

Regards,
Ruth

[mannythedog]

Hello all.

It has been some time since I last posted, due to the reality that life does go on. I wanted to fill you in on mom.

She has been w/ out pop since a year the 23rd of December. She has taken short trips to visit my sister, Sue, in Hickory, and had also spent this past Thanksgiving with her. The chores go on, as does her new Independence, something, I think, she still has not got a hang of, but declines invitations up to our place. She does come for supper sometimes, but not to hang out. She has been doing things in the house, and enjoys reading and, I guess contemplating the mysteries of the universe... Oh, and enjoying holding the remote.. That much I do know.

We all {family that was in town} got together on the 23rd in the early evening. My daughter Belle {8 in Feb} wanted to do something nice for pop. We gathered at the upper pasture and released notes, a picture of his old truck and the snow covered property and my sister even sent up a peanut butter cookie. {he liked her cookies} She was going to send two, but the dozen balloons sank, so she could only send a piece of one. They were good and heavy. I read a poem by Lou Epstein, I was loved, and choked my way through it. The balloons were set aloft by the kids, and it was kind of odd. They went up, steered to the right, made a clock wise pattern around the pasture, as if taking in the property, and then they ascended and cleared the trees, heading to Snowbird Mountain... His favorite spot. I thought that was fitting.

I felt glad that we celebrated the day he started his new adventure, and my daughter was very happy, as was mom.

I attach this to my post, because I feel I have said it all. I truly miss and love my father. He was my mentor growing up, and became my friend as I got older. I only hope that there are sons and daughters out there that have had the same experiences with their fathers, that allow them to become friends. Many of you responded with information, caring words and just plain listened to me ramble. Many of the care givers have lost loved ones since pop passed, and have been looking at how mom copes. Mom is doing good. I will say I am not surprised, due to the fact that pop leaned on mom. Something I realized after he was gone.

I hope those fighting still keep hope and take it easy on the care givers, and the care givers remember that Patience is a virtue.

God bless all of you here at marrowforums. I hope Pop's story of his journey helps many find answerers they are looking for, and if not, just remember what Pop said.

"Scott, it is not about me, it is about you, your mother and everyone else. I had my time, my fun, great kids and woman that I loved with everything I had for more than 55 years. Live, love, rejoice, have faith and enjoy your family. Mom will do just fine."

[JEZ]

Originally Posted by mannythedog

Hello all.

It has been some time since I last posted, due to the reality that life does go on. I wanted to fill you in on mom.

She has been w/ out pop since a year the 23rd of December. She has taken short trips to visit my sister, Sue, in Hickory, and had also spent this past Thanksgiving with her. The chores go on, as does her new Independence, something, I think, she still has not got a hang of, but declines invitations up to our place. She does come for supper sometimes, but not to hang out. She has been doing things in the house, and enjoys reading and, I guess contemplating the mysteries of the universe... Oh, and enjoying holding the remote.. That much I do know.

We all {family that was in town} got together on the 23rd in the early evening. My daughter Belle {8 in Feb} wanted to do something nice for pop. We gathered at the upper pasture and released notes, a picture of his old truck and the snow covered property and my sister even sent up a peanut butter cookie. {he liked her cookies} She was going to send two, but the dozen balloons sank, so she could only send a piece of one. They were good and heavy. I read a poem by Lou Epstein, I was loved, and choked my way through it. The balloons were set aloft by the kids, and it was kind of odd. They went up, steered to the right, made a clock wise pattern around the pasture, as if taking in the property, and then they ascended and cleared the trees, heading to Snowbird Mountain... His favorite spot. I thought that was fitting.

I felt glad that we celebrated the day he started his new adventure, and my daughter was very happy, as was mom.

I attach this to my post, because I feel I have said it all. I truly miss and love my father. He was my mentor growing up, and became my friend as I got older. I only hope that there are sons and daughters out there that have had the same experiences with their fathers, that allow them to become friends. Many of you responded with information, caring words and just plain listened to me ramble. Many of the care givers have lost loved ones since pop passed, and have been looking at how mom copes. Mom is doing good. I will say I am not surprised, due to the fact that pop leaned on mom. Something I realized after he was gone.

I hope those fighting still keep hope and take it easy on the care givers, and the care givers remember that Patience is a virtue.

God bless all of you here at marrowforums. I hope Pop's story of his journey helps many find answerers they are looking for, and if not, just remember what Pop said.

[I]"Scott, it is not about me, it is about you, your mother and everyone else. I had my time, my fun, great kids and woman that I loved with everything I had for more than 55 years. Live, love, rejoice, have faith and enjoy your family. Mom will do just fine."[/I]

Very touching... loving tribute to your father. He obviously raised you very well! You know they say the apple never falls far from the tree!

[mannythedog]

I just wanted to let you all know that I think of marrow forums daily. It was this site that allowed me to express my fathers and my thoughts.

On a funny note, Pop visited last week. He has a unique way of, sometimes, breaking mom's stuff. Anyway, mom's washer stopped working. They had gotten a front load back in 1998. It stopped pumping and spinning and mom called the repair guy. {I'm not a washer guy, I had to yield} After the inspection, he hands mom some items. I swing by after work and ask her what was wrong with it. She has me hold out my hand and she dumps over a dozen finish nails and a dime into my hand. I looked at her and said, "Look, a visit from dad." We got misty eyed and laughed. I asked her to keep the treasure and she agreed; however, the rub is, pop did find a way to break something a year and a half after he had moved on to his next adventure.

Once again, he gets the last word. The washer, done. She had to get a new one. As I sit here with a smile on my face, just remember, as our loved ones move on without us, they always seem to leave a something behind, even if not planned, it becomes a treasure like this one.

Pop, your a hoot, and I miss you.

Thanks again Marrow forums.

Scott
Scott Of Bob

[Zoe's Life]

What a sweet story. I am glad to hear how your dad still brings joy in the midst of frustration (I mean a washer breaking is frustrating, right?)

Zoe

[Noni]

Scott, thank you so much for sharing your story. I lost my mother on Sept 22nd and it seems that every hour I relive the shock of her death.

I know it will get easier in time it's just hard to think about that now. Your words have given me peace and hope.

Bless you and your family.

[bebop]

Scott I hope you still read here. I was searching for information on end of life stuff for my Dad. You and your family have truely been an inspiration to me and many others here I am sure. I don't know how you have managed to get thru all this. I am so glad your mom is doing stuff on her own and seems to be doing ok. I hope I have even half as much courage to get thru this myself.

Dad was diagnosed in April this year with mds. it has been a long battle.
I think my Dad's transfusions have stopped working. I am watching him grow weaker all the time. This week he told us as a family he feels his body has changed.

[mannythedog]

Yes I do check in, and I am glad that my father and I were of some help. Like I stated before, I was looking for a "what next" and there is really not much there. Many here had wonderful input to add to Pop's story, and I am glad we decided to do this.

If you have any questions about, tough stuff, I will answer on the private letter section, but not open. Very sensitive stuff days before passing, and not all do the same things, so I wish not to cause undo concern.

I check in from time to time, so fell free to ask.

Scott

Son of Bob

[bebop]

thank you so much Scott. I really do appreciate that. Dad is growing weaker and has alot of hip pain. His plts last week were 13 but had a unit of those along with 2 blood.

[Nancy V]

Scott, are you still out there? We just stopped the transfusions for my dad. Can you give us some insight on what the last weeks were like with your dad? I'm new to this forum and not sure I'm submitting correctly.

[bebop]

Nancy I can help you with that. They stopped my Dad's transfusions too. feel free to private message me.

[mannythedog]

I was informed you were here and I apologize for not being here. I left you a note on the message area.

Again, I am sorry.

[mannythedog]

Hello,

Mom is doing well. Has been working much around the house, but slowing down due to her age. We all still talk about pop... A LOT, and he is with us everyday. Funny thing, I am no longer in the Auto Repair Business after doing it 27 years as a living. I am now working at the Local Hospital as a CRCST in the OR Department. Many people there, especially those in Katie's World still talk about Pop. He did leave a lasting impression on many. Since I have started there back in June of 2012, I have helped on Many Pick Lines, and I find myself having so much compassion for these people, as I remember when pop got his.

I think of those I discussed things with here often, as much to say on a daily basis. This site has helped me cope with my fathers illness and his passing. As I said many times, he not only taught me how to live and love family, he also showed me how to die with dignity.

God Bless all of you, and I do hope Pop's story has helped.

Scott
Son of Bob.

[triumphe64]

How is your daughter?

[mannythedog]

Funny you should ask about Belle.

Pop had had written all of us letters, even my small children months before he died. The catch with Belle and Reagan, they had to wait for their 12th birthday before they could be read their letters. His feeling was they would be old enough to understand what was in them by then. Well, Belle got hers the 5th of this month, and she had the "happy/sad" cry. We talked about it, and I explained to her how lucky she was. I mean, how many kids get to talk to their grandparents and get advice from them 5 years after they have died?

We talk about Pop often, and laugh about how much of a nut he was... as I tend to sound like him from time to time and get the "Over the Glasses" look from the wife.

As far as her aspirations, she still wants to go into the medical field, either a Trauma surgeon or into OB/GYN, cause she likes babies.

Yeah, dad really liked getting the last word in, as my letter started with... "Well, I guess you thought you got in the last word... ha ha ha"

Overall, Pop did a real nice thing, and Belle adored him as he did her. It was a good close to her 12th Birthday. She really appreciated it and appreciated being remembered by him.

Scott
son of Bob