Dad has hypo-cellular acute bone marrow Leukemia

[Birgitta-A]

Hi Scott,
Your father is an excellent example on how dr:s make wrong predictions of how long we will live. Sometimes I wonder if they think they are God.

It is wonderful to read about your dad and his performance status ! I know you are thankful for every day he gets with good quality of life.

Blasts are immature white blood cells and when you have more than 20 % blasts you have leukemia.

Platelets are small parts of totally different cells called megakaryocytes. These kind of counts can never be mixed up in tests.
Kind regards
Birgitta-A

[Marlene]

Hi Scott,

I have to second Birgitta-A's comments.

IMO, I would certainly question any recommendation to start up chemo again and I'm not sure that I would go for another BMB. I would look to manage symptoms and treat based on CBCs.

At this point in his disease, the chemo seems worse than the disease. It can be difficult to dertermine if the disease or the chemo is responsible for all the turmoil. And it can take quite a while to recover from chemo. Fatigue is a big complaint from many who have undergone chemo even months after the last treatment.

Marlene

[mannythedog]

Pop is not blasting; however, he now has the cold sweats more than ever, and severe headaches. We are all confused. Dr. should be contacting him today or tomorrow.

Thanks for the replies.

Scott

Son Of Bob

[mannythedog]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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. 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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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