Dad has hypo-cellular acute bone marrow Leukemia [Archive] - Page 2

mannythedog

Sat Nov 1, 2008, 07:29 PM

Hello,

Have had some developments on pop. Just a quick re-cap. Pop off chemo 4 weeks now. No blood or platelet products for 10 days. Last test 4 days ago hemo 10.5; plates 91; whites 5.7 official.

He has severe headaches, and Dr. sent him to CAT. No issues in head. He had sweats all night and day for months and 3 days ago, just stopped like turning off a faucet. Since then, drinking over 2 gallons of water plus other liquids a day. He says he is cotton mouth and had metal taste in mouth. Can not sleep, due to thirst and headache. Urine output "lot's" and clear. Ebergy lever was pretty good until a day ago. Now it is tanking. His stomach is hard ad a rock and he has lost his appetite. {I figured it is due to filling up on water}

His sweats and headaches seemed like a type of withdrawal. The liquid input and loss of strength and appetite, which is something he has always had through all of this, has got me stumped. Oncologist has not called him yet since the last blood test.

Input. Sound familiar. His regular doctor has stated that pop is in "uncharted territory". I think someone out there has had a loved one or has experienced this before and knows what may be up. Poor mom has been on such an emotional roller coaster over the last year, I just don't know what to do for them anymore, other than what I have been doing.

I check every day, even if I don't input. every day.

Thank you all

Scott

SON OF BOB

Oh, and the tractor up date, steering valve needs a part I am still waiting on. Would love to get him on it.

Marlene

Sun Nov 2, 2008, 10:27 AM

Has anyone checked his sugar? High thirst and urine output can be a sugar issue. Also, sounds like he is detoxing from the chemo. Chemo disrupts so many things. Can you take him to one of those 7/24 Urgent care clinics to get his sugar and electrolytes checked? That much liquid can disrupt his electrolyte balance.

Chirley

Mon Nov 3, 2008, 01:12 AM

Hi Scott,

It's great that your Dads counts are so good, now he just has to feel a bit better to appreciate the respite from transfusions and chemo.

I found this which sounds just about what you are describing.

Diabetes insipidus (DI) is a condition characterized by excretion of large amounts of severely diluted urine, which cannot be reduced when fluid intake is reduced. It denotes inability of the kidney to concentrate urine. DI is caused by a deficiency of antidiuretic hormone (ADH), also known as vasopressin, due to the destruction of the back or "posterior" part of the pituitary gland where vasopressin is normally released from, or by an insensitivity of the kidneys to that hormone. It can also be induced iatrogenically by various drugs

If your Dad has this and can't drink enough to cover the urine output he could have mild dehydration. This would explain the cotton mouth, weakness, metal taste.

I also read where diabetes insipidus can be caused by haemachromatosis (too much iron).

Anyway, just a thought.

Best of luck.

Chirley

mannythedog

Mon Nov 3, 2008, 07:12 AM

Thanks Chirley,

It seems that you hit his symptoms on the head. He goes to get his blood test tomorrow, and I asked him to get his sugar and iron levels checked. I will also pass this info along so he can ask the Dr. this week.

Thanks again.

Scott,

SON OF BOB

mannythedog

Tue Nov 11, 2008, 04:17 PM

Hello all,

Pop had had a rough 2 weeks. He has had the Thrush and some unknown issues that are causing him headaches and fever. He has lost about 15 pounds, {hard to eat, mom has been pushing scrambled eggs for protein, and they slide down} and he just doesn't have the energy to do anything. His sleeping habits are pretty much hour on, hour off. I have tried to relieve mom, but she won't take time off except to run to the store. I asked him if he wanted hospice, but he still has an opportunity to restart the chemo. Once he starts hospice, all that is over, including blood products. I just see how tired mom is, and she could really use some rest.

Pop also had blood tests today. His Platelets are 154 , dropping as expected, hemoglobin 8.3, gets blood tomorrow, and whites holding at 13. His family doctor took some blood for different tests, liver and electrolytes as well as unnamed others. He wants to put him on a medication to help the Thrush, but is afraid of his liver function. Since he is having an issue with the meds, vomiting, the doctor took him off the pills, and wants to put him on intravenous meds, but only if his liver is O.K. with it. As you know he is off all chemo drugs and only getting blood products as needed. The Dr. did prescribe a mouth numbing wash so he can eat more. We'll see how that works.

Pop is so tired and miserable. He is trying to make holidays again this year, but it is taking a toll on him. All the kids and grand kids will be here, except for one. My niece just got married, and lives way up east, and there is a time and finance issue. I might try on my sisters to see if we can't pool up some finances for them.

He is so excited that we all will be together. He so much wants to be here. Last night, he got kind of weepy. He was saying how much he loved me, and appreciated me. We have always had an open relationship, but over the past year, a lot has been said that people normally don't get around to saying. It is just that last night was, well, different.

O.K. Enough of that. Thanks for reading my rambles, sending ideas and just reading my posts. He really enjoys the fact that people are interested in him, and I appreciate your prayers and caring. Oh, and the steering valve for the tractor will be in this week. The old one needed parts that are not available. Go figure; however, I did have it running.

I will up date when I hear about the other tests.

Thanks again,

Scott

Son of Bob

mannythedog

Thu Nov 20, 2008, 08:20 PM

Hello,

Pop is declining pretty fast now. He is loosing strength in his lower legs, and has to use a shower seat due to the fact that he can't stand for long periods of time. His thrush really never went away, but we thought it was getting better, but it is returning and he sleeps most of the day now. He has been drinking lots of liquids, which will allow me to segway to today's oncologist visit.

Pop asked me to drive him to the oncologist today. He has gotten to the point that he has taken himself off the driving detail. The doctor is about an hour away, and he laid down for most of the trip. Mom was not in shape to drive. She has been averaging 2 to 3 hours of sleep per day. My wife Angie and I have tried to relieve her, but she will not take time off.

We asked a lot of questions today, and one of them was the metal taste that pop is getting in his mouth. We have all thought it was due to iron over load or the chemo, which he has been off for a while. The doctor stated that when the leukemia cells die off, like all cells do when they reach the end of their life, the leukemia cells release a chemical the produces a metal taste. {I did not know that} He instructed Pop to drink citrus and sour items, and asked mom to cook with a lemon base, which she has been doing for years. He stated that that is a sign that he is blasting; furthermore, his white count climbing was another sign.

Pop also asked him about a time line. We all got a chuckle out of that one. I stated "last Christmas." The doctor said if he follows his present course, meaning how he has deteriorated over the last month, a month or two. He stated not to get overly excited about Christmas, but he also added that Pop was not much for sticking to expectations. Pop is excited about Christmas because all of the family has scheduled to be here. Mom asked what to expect, or what will happen next. He stated that Pop will continue to loose strength and will eventually not be able to get out of bed.

The doctor gave him a prescription for his mouth, it should help, but did not guarantee it would cure the thrush. Pop's body is attacking itself, and there will be no winners.

I usually don't think much about the visits due to the fact that there is always an appointment for two months from now, and I don't get a "how much time do I have left with my father answer" from the doctor. Well I got one to day. As we were leaving, the doctor came out of his office and gave Pop a long hug good bye. That pretty much answers the question. He has never done that before.

I do hope that this rolling journal will help those with questions of "What is Next."

I have said it before, and I will say it forever. I am Son Of Bob, and I love my father.

Thank you for your prayers and thoughts.

Scott

Son Of Bob

P.S. Oh, and one pressure off Pop's mind. The Tractor is running again. preformed chores last week with it. Maybe he will take one more ride. I hope.

mannythedog

Thu Nov 27, 2008, 10:07 AM

For those of us living in America, today is Thanksgiving. It has become many things to many people, but to most, and to me, it has always been a day of family, thanks for what we have and remembrance.

I remember last Thanksgiving 2007. Pop was in his first stages of Leukemia, and was told that he would not survive the Christmas holiday. Fast forward to today, and here he is. A testimony to Pops stubbornness. No, he is not very aware of his surroundings anymore and has lost conception of time. He sleeps most of the day, and has no strength left. Yes, he can hold a short conversation so I may still pick on him some. An odd relationship, but it works for us.

A few weeks ago, when he was feeling better, he had mom order a crown rib roast from the butcher for today. He said he wanted something different, and saw the picture of the roast in moms cooking magazine. He said if it was going to be the last Thanksgiving, he did not want turkey.

Today, mom is coming to our house to cook it. He can not handle the smells any more. He is hoping to be able to eat this evening; however, he has not been able to keep much of anything down except strawberry ensure and shakes. He has lost most taste due to the thrush and only sour things taste at all. That's o.k. Pop still beat the time line. He just wants to see his family. He really wants to be here for Christmas to see them all, but fears he will not.

He received blood yesterday, but it only came up to 8.5 from 8.2. His whites doubled since last week. I guess we are nearing the end. All he says now is that he just wants it to be over. He was been sick for some time, but just in the last two months, he has really been feeling it. My mother, being a member of the breast cancer club of the early 80's, said she remembers how he feels now. The difference is she got better and said pop looks much worse that she did.

He is sleeping now, and will be up for supper. My daughter, Belle, is having a tough time with it. It is hard for a 6 year old to see her Pop slowly die. She seems to have a grasp on it, but at times, has crying fits when watching a show with a sad scene. We talk about it, and I tell her that not all people die like this. Pop is strong, and he is looking forward to seeing my Grand Pa and Grand Ma. {Bompi and Gigi} She seems o.k. with that, but we all, even her teachers are watching her.

Today is thanks and remembrance, not unlike every other day for me. I am thankful for my wife and kids... all my kids. I am thankful for my job, as there are many without. I am thankful for, the most part, the world. There are more good people than bad, we just have to work a little harder to see that. I am thankful for the time I have gotten to spend with my parents and what they have taught me through actions and direction. They have taught me well. I know how to love, have fun, work hard and be a good husband and parent. But, most of all, I am thankful for being able to be here for my father in his last days. This is the last lesson he has to teach me. He is teaching me how to pass on to the next life with dignity and pride.

I love you Pop.

Scott

Son of Bob.

Joan

Thu Nov 27, 2008, 05:17 PM

Scott;

I have appreciated you taking the time to share your father's story with us and keeping us abreast of his journey toward death. I was wondering how you daughter was handling this since I remember last summer you wrote of her wanting to go to doctor's appointments, etc. with him. Thanks for the up-date on her in your Thanksgiving Day post.

Joan

Debra

Sun Nov 30, 2008, 09:30 AM

Scott, thank you for your posts and for sharing your experience with us. At times like this, words are insufficient. You and your family have been in my thoughts and prayers - and of course, especially your Dad. Deb

mannythedog

Wed Dec 3, 2008, 07:21 AM

Hey all,

Pop had is blood test yesterday and received the rusults the culture of his mouth swab from last month. First, his culture revield that he has Candida albicans (http://en.wikipedia.org/wiki/Candida_albicans). It is pretty nasty, and he has to be on 10 days of Intravenous therapy. That means 10 trips to the hospital. He is not eligable for home helth nurse unless he quits all treatments. Odd. Mom just wants him to be comfortable in his last weeks, and this "crud" he has is really rough on him.

O.K. Blood. His results showed 13 on platelets, 8 on hemo and 23 on whites {whites still elevated} Today he gets platelets and 2 units of blood. I you remember, last week he only came up .3 of a point. He is in for a rough day today.

He has no strength in his lower body, and sleeps most of the day; however, mom says he gets nocturnal and wants to drink... a lot. She makes sure he has some power aid to keep his electrolite levels up.

When I go up to see him, he just listens while I rub his legs, or we just sit and enjoy each others company. His legs are really uncomfortable for him. O.k., that was a lie. I am Son of Bob, there really is not a quite moment there.

Thanks for the prayers.

Scott

SON OF BOB

mannythedog

Tue Dec 9, 2008, 06:46 AM

This was a bad week for pop. Saturday I was planned to go out of town for a work function, but decided to stick around and take pop to the hospital Saturday and Sunday for his Candida albicans treatments so mom could have a break.

Well, on with the story, good thing I stuck around. While I was stacking wood for mom and pop, pop decided to take a trip down the stairs. He has gotten so weak and unsure of his footing, and after an inventory of his body, broke bones, bleeding or not, he seemed to be o.k. I lifted him up, but first made him promise that he now has to use the facilities and shower up stairs. Mom had me outfit the shower and she moved his shower chair up stairs.

This has been an ongoing thing w/ pop. I had asked him before to do this, but never pushed. He liked to check on the fire, and while down there, use his bathroom. I never really pushed because it was the last thing he had. He is now confined to the main floor {stairs go to a walk in basement} and that really was not what he wanted.

The treatments for the Candida albicans do not seem to be working. This weekend pop and I spent about 3 hours each day at the hospital. That takes a lot out of him. Yesterday, mom took him in for treatment 7 of 10. He has had some bleeding from the pick line, so they took a blood test. His whites are at 40, hemoglobin at 8.4 and platelets at 13. He is also blasting now. 42. He looks tired and the intravenous meds make him ill. He goes in today for treatment #8, blood and platelets.

I asked pop if it was worth it, if he wants to stop and be comfortable. He said he would love to see everyone at Christmas, and wanted to try to kill the bug so he could eat one last good meal. The thrush has taken him to soups and potato's. He gets an occasional shake, but it all tastes bad when he is done.

I have spent a lot of time with pop over the course of his journey. I made sure he was not feeling sick last night, he has been vomiting severely, and took Belle {she is almost 7} to see him. She talked, he listened. When we got back to the house she said she knew he was going to die soon, and was glad he could see his mom and dad again. I told her that after that, they were all going sailing. His second love after mom.

Out of the mouth of babe's. She is a great kid.

Pop is, if anything, stubborn; however, he has met his match. He understands that, and is not sad he is dieing, just aggravated that the way he is going is making mom sad.

I will keep all posted. Thanks again for the thoughts and prayers. Mom can use them right now.

Scott
Son Of Bob

mannythedog

Mon Dec 15, 2008, 07:46 PM

Hello,

Pop had a rough week and weekend. He finished his intravenous meds, and it did not help. That let him down. He also received a call the other night. Dick Wilson, the gentleman that taught me how to fly when I was in high school, helped build my first home and a long time, good friend of ours dies in his wifes arms due to complications caused by liver cancer. His wife talked to Pop for a while, and he became very sad. He knows that he is at a point in this disease that he will not get the boost from blood and platelets anymore.

Today he had mom call me at work to get info on some hospice care. He and mom have an appointment tomorrow with an evaluater that is coming by the house. He has stopped all blood treatments. Last week was the last one. He is now using a walker to get around when he has to use the facilities, and he has not been eating.

I sat with him on Saturday while mom went on errands. He did not eat breakfast; however, he wanted me to make him a pancake and egg about noon. It did not stay down. He had asked me to put on his socks because he is always cold, also his ankles and Calv's are so thin. He has gotten so weak since his fall down the stairs last week.

I told mom to schedule his baths and bed changes when I get home so I can help her. I told her she doesn't have to do this alone. Pop does not weigh much now; how ever, neither does my mother. I did not want her st strain or get injured. There is no need with me here.

I knew that this day would come. He is blasting so much, that he has no taste anymore. All he tastes is the leukemia cells dieing off. He doesn't say much anymore, and he has no emotions. I try to make him laugh, and pick on him a little, but it does not show. He is so tired. He said he has had enough. He is ready to go sailing now. I knelt at his bed side and told him I loved him, and I will miss him. I also told him that he raised me with all the information and love any father could ever give a son. He hugged me. Thats all I needed

I will keep all posted on the rest of the journey.

Always proud to be...

Son Of Bob

mannythedog

Thu Dec 18, 2008, 06:23 PM

Today pop received his hospital bed. I took off work early to break down Mom and Pop's room. Mom asked me to swing by Kelly's Home Health {great people} and pick up a wheel chair for the day. Apparently, Pop could not get out of bed today. I needed to lift him and we shuffled to the chair. He stayed on the couch while we waited for Kelly's to deliver and set up the bed.

He and I talked while we waited, and he was not lucid all the time. His hemoglobin levels must be so low that it seems he is not getting enough oxygen. His platelets must also be dropping rapidly. His gums are bleeding, and his recent needle points from last week are re-bruising under his skin.
On the lighter side, he asked for some Pepsi, and stated it was the worst ginger ale he ever tasted. I laughed and explained why. He caught on and gave me a ha, ha.

After the set up, we re-shuffled to the chair, and I got him back to bed. I would say that he has lost about 1/2 of his body mass since his fall 2 weeks ago. I only use this as a meter because that was the last time I saw him partially dressed and lifted his whole weight. He is swelling around his spleen also, becoming distended and getting sores already.

Belle keeps asking to see her Pop, I will take her to see him one more time tomorrow night. Just moving him around, he was so tired, mom gave him a pill, I don't know which one, and she has the morphine rub for his gums. He is sleeping now. I guess as long as I keep the room fairly dark, it will be o.k. She really needs to see him at least one more time.

The hospice nurse stated that he may have a week at the most from her past experiences. I know Pop has been tough up to now, but I hope he goes sailing soon. I don't mind being there, and giving him and mom my time, but he is so miserable. I want him to be comfortable, and I am afraid that my 6'5" 280 lbs hurts him when some I lift him. I am glad I am walking distance so if she needs me, I am there.

He is sleeping now, and that pretty much what he will be doing, so I will not write again until his journey ends. Not much else to say, for I have given all the information that Pop wanted me to give. He hoped his experiences would help others prepare for the next phase after all options were exhausted.

It was a gift to keep him around for the extra time and I will thank God forever for that gift. I love you dad.

Scott

Son Of Bob

Chirley

Thu Dec 18, 2008, 07:07 PM

Hello Scott,

I have no words.

I only wish for peace for you, your family and your Dad. My heart goes out to your mother.

Love

Chirley

Neil Cuadra

Thu Dec 18, 2008, 07:29 PM

Scott,

The doctors help us with our quantity of life but your family, and especially you, have given your father the qualities that every life deserves: the love, caring, attention, sharing, and togetherness that give us what we really need, for however long we can have them.

Your ability to share your experiences with us has been phenomenal, and we can all learn something from the way you have helped your father. We wish you the best, and additional strength, in the coming weeks.

debbie2008

Thu Dec 18, 2008, 09:09 PM

until this point, i have only read the posts. my heart both rejoices and bleeds for everyone here. but you, above the rest, have touched me deeply. how very proud bob must be of you. through your postings, we have gotten to know your triumphs, fears and deep love. you have enlightened us to what may come, and in doing so have eased our trepidation.

i know as a community we all pray for you, your children, your wife, your mom -- and most of all dad. we pray that his soul peacefully and painlessly leaves this body and joins his creator. if our missions on earth are to bring love, knowledge and joy to others, he certainly has accomplished his. you are truly the epitome of what we would like our children to be and hopefully are.

my husband is on the mds/mpd journey and in my heart i know it will not be long. when it is time, i will ask my heartbroken children to read your posts knowing they will gain strength from them...as i have.

you are truly a remarkable man and your family is extremely fortunate. your dad's disease has been difficult, but you have faced it with strength and compassion. we all know how difficult it is for you and do not, for one moment, underestimate your pain.

but you have guided us all. our combined prayers will be with you through the end. i know they will help you.

we thank you for letting us into your soul. through your openess we have become part of you. we are all bleeding for you. we love you and our prayers will be endless.

mannythedog

Wed Dec 24, 2008, 10:10 PM

Pop left to go sailing at 9:55 p.m. Dec 23, 2008.

I had an urge to see Pop, so I took off work early on Tuesday, and spent about an hour and a half with him and then went to get the kids from day care. My sisters and all my nieces and nephews are in town and got a chance to visit since Sunday.

Mom had my sister Sue get a hold of all of us to come see him at around 7pm. On Tuesday evening my 22 year old son Tony had just arrived at that point for a Christmas visit and to see his grandpa.

We all were in his room talking and visiting. He had not been able to talk since about Monday; however, would moan and communicate by nods and rhythm moans. He told my wife Angie he loved her on Monday night, and shocked us all. He told mom Tuesday afternoon, and made her so happy. I got mine over the weekend. These were great acts, because he was going through a very aggressive and agitated period since Hospice took over.
When we all got together on Tuesday evening, we each took our turns to say our goodbyes. Each of us had a special story about him, or a special time we shared with him and told him in our own way as we held him. My sister Lisa sang him a song, and we had a sort of memorial service with him that he got to be a part of. It was a very special time.

After, my sister Sue and my mother administered his next round of meds. {the meds hospice had him on kept him from becoming agitated and made him sleepy} Mom called us in to say our good byes because she was not sure if after this med cycle if he would be lucid again.

We all went to our respective homes and spots, and at 9:55, my sister called me said it was finished. Pop was fighting to stay, and mom told him it was o.k. to let go and we would be here to take care of things. She laid the prayer blanket on him and she talked him over. My mother said that he was waiting to see Tony, and we all agreed.

My wife had such a hard time though the last months, but when she saw him after he left, she felt as if a thousand pounds were lifted from her. His recent pain and stress was gone, and he was at peace. Angie, my mother and my sister Sue I sat with dad until hospice arrived to pronounce him. It took about an hour since we live in such a rural area, but it gave us time to reflect. To see him there, without feeling less of being not what he was, not aggravated or in any more pain, made me at peace.

My sister Sue had her lab, Bailey, in the room with us, and while the hospice nurse was there, a little after an hour after he passed, the dog got up and went to my father. She tracked something from him to the upper corner of the bedroom near the ceiling. The same spot he was focusing on for the last 3 days. He would have conversations looking in that direction, but nothing we could understand. I figured he was talking with his dad or his uncle. I believe Bailey saw him spirit leave. They do say that dogs can see what we can’t, or are not able to understand. My mother, a very perceptive person, said this morning she did not feel him anymore. He had left. His business was completed.

After the funeral home took pop away, I stayed with mom for a little while longer and talked. My sister sue was staying in the house so when I left, she was not alone.

His last week was so hard for him. He had nothing to eat since a week ago, and that was only Ensures. Since then, only ounces of liquid at times, but really nothing to speak of. He was so darn stubborn. He wanted to make Christmas, you know, his next goal; however, the sub-goal, was seeing all those that were going to be here. So, I guess you could say, he did in fact make his goal.

Belle, my little girl I have been writing about, the apple of Pop’s eye, was a sleep when he left. I told her this morning. That was the hardest thing I have ever done. We had a good cry and talked about things we did with pop. I did not take her up to the good bye ceremony. I felt she would be scared and not understand.

Thank you all for letting me share Pop’s life with you, and I hope that his strength and faith during his journey will give those on the same path the information they seek. If you’re a care giver, call in the troops and share the experience. If you are a patient, let the care givers help you and share the experience. My mother said it was a beautiful thing with all of us there, and I will agree with that.

I would also like to thank hospice for all their caring.

Pop, I will miss you. You have left a bigger hole than you will ever know. The bells have stopped ringing and it is time to roll up the hoses and bring in the trucks. Take a break and go sailing, and may you have fair winds and following seas and may the salt spray always be on your lips.

I love you Dad.

Scott
FOREVER, THE SON OF BOB

slrb2152

Wed Dec 24, 2008, 11:12 PM

Hello Scott,

I, like many others, have been following you posts regarding your Father and his fight these past months. The past couple of days, I came to the forum specifically to check to see if there was news of him. I was so sorry to see your post.

You said your Dad's goal was to stay with you all until Christmas. But, I think it was not the date of Dec. 25th he was striving for, but rather the coming together of those he loved and who loved him. He wanted to see all of them and say goodbye to each in his own special way. Yes, I would say he certainly reached his goal.

There are no words to say to make it better or to lessen the pain or fill the hole in your heart. You have precious memories of time spent with your Dad, times spent talking about life and love, and sharing your feelings for one another. That is a real treasure. What a special man he must have been-what a special son he has.

Please know I care-we ALL care. I think I can freely say, all who are on this list are saddened at this news. We feel we too have lost someone who had become special to us.

May the hope that Christmas represents be yours.
May God bless you and your family and fill you with His peace.
Sharon Bush
AL

Ruth Cuadra

Thu Dec 25, 2008, 02:06 PM

Dear Scott and Family,

I hope this message finds you and your family all together and celebrating the wonderful life your father had and the wonderful family he created. Your generosity in sharing your and your Dad's experiences--both medical and emotional--during his journey has created a legacy that will benefit Marrowforums members for years to come.

May your memories of your father in the best of times be a comfort to you now.

With sympathy,
Ruth Cuadra

Suzanne

Thu Dec 25, 2008, 08:25 PM

Scott,
I logged on today to see if there was any news about your dad, as I always do. I was so sad to see this post. Know you are and your family are in my prayers. I am so sorry for your loss, there are simply no words. :(

Chirley

Fri Dec 26, 2008, 02:07 AM

Scott, I'm so sorry for your loss. My thoughts are with you and your family but specially for your mother at this time. I hope the time you had together to prepare for his passing will make it a little easier to be able to celebrate your Dads life and rejoice in fond memories.

With sympathy,

Chirley

mannythedog

Fri Dec 26, 2008, 07:23 PM

Hello all, and thank you for the kind replies.

In response to my Australian friend, Chirley, yes it was tough, but your right in saying it was not as tough as it could have been. Mom, My sisters Sue & Lisa, My wife and I had been, physically, around Pop during the last year and 4 months. The doctor stated last he was going to die last Christmas, so we had a little time to prepare with Pop.

He took the extra time and wrote all of us letters to read "after the fact." That is what he wrote on the envelope. Always the jolly, joker. One of his written statements to me, and It makes me think he knew I was going to talk his ear off his last days when he could not talk, was write "So, now I DO get the last word." It was a 7 page letter, that was unexpected, but very needed. And yes, at our family good bye, I did say I was getting the last word and I could not believe it. Well, he got me again. I'll let him have this one.

My mother has not had time to decompress yet. We had Christmas together and a memorial dinner for Pop. My niece sent a beautiful candle arrangement for Pop, and we put it at his spot. Mom lit it and said a few things. That's when it really hit me, for two reasons. First, I always sat opposite of Pop and all I saw behind the candle was my reflection in the window, and second, It is now my responsibility to say the blessing at mom's house when I am there. Belle left the table and cried with my wife. My mother got her to stop so she could go and eat. Mom is one tough cookie.

Most of the family left today; however, my sister sue is still there through the end of next week. She is a teacher, and has some time off. My family unit, and my local sisters unit left her alone today. My family did things with my wifes family. Her parents came down from Ohio to keep things as normal as possible for the kids.

Mom is a strong woman, but has never lived alone in the 55 years she was married to Pop. Yes, Angie and I are up the driveway; however, I read her as seeing this as a new adventure. She has always been the one to want to try new things; furthermore, she stated that now she can hold the remote for the TV. Now that is a fact.

If you all would like, I will keep writing about mom for a while. I will also freely answer any questions any of you care givers may have pertaining to the uncontrollable emotional and hospice related care issues. Not that Hospice was an issue, the patient is the issue. I will also answer questions for you, the patient, when all treatments have failed.

I understand I was only one of the caregivers, but there are things that happen during the last months and questions arise that many people do not have answers for. That is why I came here to Marrowforums. To get info for the progression and eventual end. There was not a site that had this type of information, this one included. We knew from the start Pop was not going to be cured, just managed, so he agreed to let me document it for all to see.

So much happened in the last 2 months, so many things I never thought were never in pop's nature that I did not write do to the sensitive nature, so if needed, please just ask. Pop wanted me to address any questions about him you may have that can help any of you that need it to along a little easier.

Once again, Thank you all for your prayers and caring. Pop was a special person, and he left a hole in my heart bigger than I thought he would. Your thoughts and kind words help more than you know.

Take me up on Pop's offer. I will keep checking in.

Scott

SON OF BOB

debbie2008

Sat Dec 27, 2008, 07:09 PM

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

Wed Dec 31, 2008, 08:03 AM

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

Thu Jan 1, 2009, 12:18 PM

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

Sun Jan 11, 2009, 10:39 AM

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

Tue Feb 3, 2009, 08:15 AM

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

Wed May 20, 2009, 11:29 AM

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

Thu May 21, 2009, 09:56 PM

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

Fri May 22, 2009, 06:24 AM

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

Sat Jun 27, 2009, 11:44 PM

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 (http://myspace.com/schultze1963)

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

Scott
SON OF BOB

mannythedog

Sun Oct 4, 2009, 01:17 PM

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

Tue Oct 6, 2009, 12:52 AM

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

Mon Jan 4, 2010, 07:04 PM

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

Wed Jan 6, 2010, 08:54 PM

mannythedog

Sun Aug 22, 2010, 09:33 AM

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

Sun Aug 22, 2010, 09:44 PM

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

Wed Oct 13, 2010, 12:39 PM

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

Sat Oct 23, 2010, 03:27 PM

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

Sun Oct 31, 2010, 03:33 PM

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

Mon Nov 1, 2010, 06:35 PM

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

Mon Sep 10, 2012, 11:32 AM

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

Thu Sep 13, 2012, 12:42 AM

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

mannythedog

Thu Nov 22, 2012, 12:13 PM

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

Mon Feb 10, 2014, 04:31 PM

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

Mon Feb 10, 2014, 05:54 PM

How is your daughter?

mannythedog

Wed Feb 12, 2014, 01:57 PM

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

mannythedog

Wed Feb 12, 2014, 02:00 PM

https://www.facebook.com/photo.php?v=780547858628834&set=vb.100000208817710&type=3

https://www.facebook.com/photo.php?v=779986935351593&set=vb.100000208817710&type=3&theater

You may need to log into Facebook to see these, but they are two chapters in a video I made for him about 4 months before he passed. My profile public. It seems that they will show without logging into FB.

Neil Cuadra

Thu Feb 13, 2014, 12:47 PM

Thanks for sharing these links, Scott.

It's heartwarming to see Bob's smile, whether it's with family or just because he's outside with a shovel in his hands. But it also reminds us how sad it is that you and your family lost him.

I think the best photo is the one with the matching "SON OF BOB" and "DAD OF SCOTT" T-shirts.

apantoja

Tue Dec 2, 2014, 01:45 AM

Thanks for sharing the journey. Your dad was very strong and I'm sure he felt lucky of having you all on that difficult time.

I watched the Facebook video and after reading all your post I couldn't avoid to feel attached to your family.

I feel scared as my mother got her diagnosed just 3 weeks ago, I don't live in her same country and that makes things harder. I'm with her for the first 3 Vidaza cicles though. Reading this forums is helping me to understand MDS and what to expect.

Thanks for being a big contributor, I really appreciate the time you took to write about your wonderful dad, your mum and your family.

mannythedog

Tue Jul 18, 2017, 01:15 PM

Just a heads up. Mom passed from colon cancer back in April. She had Adenocarcinoma in her breast in 1981 and after many years in remission it came back with a vengeance in her cecum and sigmoid. I had the honor of having her live with us and being her primary caregiver. Belle, now 15 and Reagan 12 this month, he will get his letter from Pop. He knows about it and is looking forward to it. The last days, Belle never left her side. Mom was her Best Friend.

I have written a book on the joys and pitfalls of being a caregiver, and once it is edited, I will let you all know. The Marrowforums posts are a big part of the book, and also following the journey with mom also. Once the final edit is complete, I will put it on Amazon.

I was glad to hear from one member not too long ago that so many have been on here to follow Pops journey. I am sure he is thrilled that he can still help.

The book? Well, being a caregiver and having a family is hard on those waiting for you to return from the duty you volunteered to do, and some may feel ignored or neglected by all the work you do for others. Please, please always communicate with your significant other and family and demand help from others. Life is sad, and hard enough without having other heartache added to it after the death of a loved one.

Communicate often with those that are your support and family.

Scott,

Always Son of Bob

Callie

Tue Jul 18, 2017, 03:41 PM

Scott - First, I am so sorry to hear about your mom and am thinking of you and your family.

I also want to thank you for all of your posts over the years. When Dad was first diagnosed in Nov 13, I scoured the site for relevant, heartwarming, and inspirational threads - yours were so informative. The forum became a source of daily conversation for us. I, too, was Dad's primary caregiver during transplant, lung surgery, relapse induction chemo, and last hours. While difficult at times, exhausting, and frustrating (when he wouldn't do what needed to be done), it was such an honor to help Dad in that way, and I wouldn't trade those days and nights for anything.

We will bury Dad this afternoon, saying goodbye to a man who helped and touched so many. While death was probable, it was still unthinkable....

I look forward to reading your book, and like many others, thank you again for all you continue do!

- Kellie

mannythedog

Wed Jul 26, 2017, 01:47 PM

I feel for you and your loss. It was so hard losing both parents, even eight years apart, but being able to share almost ten years with Pop and just over eighteen with mom living near them and being there for them when they needed me was a joy, and also a pitfall in my life. Being the child they raised, I owed it to them to allow them to have their wish to pass at home, but I fear that lost my wife and best friend in the process.

It is a balancing act when your own family is involved as you take on the caregiver role. I will never regret being there for my parents, but I will always regret the way I handled things with my family and who I let into my home. Basically, marriage should never be put on cruise control when taking on such a great responsibility.

Any of you new to this thread and reading it, please communicate, don't be an island and don't be afraid share the stress because you're scared somebody close to you will think you are less than they think you are. If you don't include them in your burden, the physical and mental pain that could follow can be too much to handle.

Thank you for the outpouring of Love; and once again, I am so glad Pop's journey is able to help so many.

God Bless the Patient and the Caregiver.

Scott

Forever the Son of Bob & Georgianna