Stopping all treatment
 

Today Dean and I decided to stop all treatment, the Vidaza and transfusions.

He is so very weak, and his quality of life is not improving, he no longer has the strength to go on.

We have called Hospice and they will be here today.

When Dean spoke to his oncologist today, we asked him how long he feels Dean could last without anymore treatment and he said just a couple of weeks because all of his counts are so very low.

I am afraid to ask what is going to happen now, but yet I want to know. I know Hospice will help Dean with any discomfort, but what will happen over the next few days now that we have stopped all care.

Thank you to everyone on this forum for always being here to give me support, hugs, hope, and friendship. Fifteen months ago we had no idea what we would be facing. A week before we found out Dean had MDS, Robin Roberts announced that she had this disease. We never thought that a week later Dean would be in a hospital and we would find out he also had this disease that we had never heard of.

It has been a long, hard fifteen months. Constant doctor visits, transfusions, shots, chemo, labs, hospital stays, etc., yet Dean has never complained or been angry, just very scared at times. We didn't have a chance to do much together during these last fifteen months, we feel as though we were eating, sleeping, and breathing MDS constantly, but we did have fifteen months together, and we are so thankful for that gift.

Please keep Dean in your thoughts and pray that he will have peace and comfort during these next few weeks. Thank you so much.

Lots of love, hugs, faith, hope, prayers and a little laughter every day!

Patti / Dean
 

I am so sorry - You both are in my prayers - and have put on a really hard fight. I dont know what to say other than you have my love.

Patti/Dean
 

I was so sorry to read your post this morning. You have both worked and fought so hard. You have been such an inspiration to everyone on the forums!

May God give peace and comfort to both of you.

God Bless!

Deb

Hi Patti,

So sorry to hear Dean is struggling so much. Please speak to them about palliative care as well as hospice care. They should be able to combine the two so that he's as comfortable as possible.

It's all very exhausting.

All my best....Marlene

My dear Patti and Dean,
We have become good friends over these last 15 months although we have never actually met.
You have both fought so hard and you have been so strong in spite of such difficult circumstances - as well as caring for and then losing your Mother on top of that.
I have constantly prayed for you both and will continue to do so. I know you are people of faith. I hope the knowledge that God is with you every step of the way will bring you some measure of comfort.
Patti, I am here for you in any way I can help. Dean, you have been a brave warrior and I wish you peace.
In spite of the very difficult time you have had Patti, you have never waivered in your eloquent support of everyone on the forums and I know it has been deeply appreciated by all.
God Bless you both on the rest of your journey.
With love and prayers,
Sally

Patti & Dean....

Yesterday as i was driving along the highway.....was thinking about you & MDS & the journey we have all been on....the people we have lost, not only on this forum, the people that we make friends with at the clinics.....life is so busy with MDS, as you say Patti....life revolves around MDS.....my Pal has been gone a year now & still find this forum a peaceful place & a place of great strength.

Patti, you & Dean are in my thoughts
Kate

Patti & Dean
 

Patti, I have been reading the forums since my wife was diagnosed several months ago. I have not posted yet because I never know what to say. But I feel like I just have to tell you that I have been following your story and I have prayed for you and Dean. You are such an inspiration and I am just so very sorry of your latest news. I will continue praying for you and Dean every day.
God bless you,
Chad

Patti & Dean, I am a new member but have read many of your earlier posts.

Can well understand what you must go through. May you have the strength to face this unfortunate situation.

Hi Patti and Dean,

Dru and I are ever so sorry for you both, and we find it very difficult to find words of comfort as we have been following each others paths.

I didn't want to make this another coincidence but I guess God wants us to meet each other, and celebrate our 77th birthday with Him.

My doctor stop treating me on Monday, and he strongly suggested Hospice, and since this past Wednesday I am under their care.

Give Dean a big hug from us, and will talk with you later; this has been an
awfully tough week.

OUR LOVE, PRAYERS, HUGS AND COMFORT,

Dru and Bob MagicBob

Dear Bob and Dru,
There are just no adequate words.
You have also been such a positive and constant support to all on the forums. Your attitude and bravery has been an inspiration to us all.
God Bless and comfort you both, your family and loved ones.
As with Dean and Patti, know that God is with you every step of the way.
With love and prayers,
Sally

I'm so sorry
 

I'm relatively new to the forum, but I've been reading through the posts. My heart goes out to your family and to Magic Bob's. My thoughts and prayers are with you.
Sharon (redslw)

Bob & Dru
 

I have been following your story also. My thoughts and prayers go out to you. God bless you for the strength and comfort you have been to so many on this forum.

Comfort and peace to you both.

Deb

Patti & Dean, Bob & Dru
 

I think of you often and say prayers for all. I enjoy your finding out each other's similarities and how you always take time to send good wishes for everyone else.

Please know we are thinking of you all.

Liz and Bob

Patti and Dean &
Dru and MagicBob,

I'm not really good with this kind of stuff, there are no words I can say...

God Bless and be with you and take care of you...

Will think of you guys often...

Dave.

Patti and Dean,
I have followed your story the last 15 months and have been so inspired by your love and dedication and by your loving,giving spirit. I do not post often but read the forum every day. You always were there for others and so I am not surprised at the support now given back to you. I personally identified with the fact that it was just you and Dean and no immediate family. That is also the case with my husband and I. I know how hard this must be for you and how alone you must feel. We all are praying for strength for both of you as the journey of life continues. God bless you!
Kathy

Thank you
 

Dean received his last transfusion of PRBC and platelets today. His oncologist wanted him to have this so he could get through the week end. Tomorrow morning Hospice will be here to speak to us.

Thank you so very much to each of you for your kind and supportive posts, they mean the world to us and give us peace in these final weeks. Each of you are going through your own struggles and still wanted us to know that we are in your thoughts. Dean and I wish we could meet each and everyone of you in person. You give us strength to face the days ahead and we feel less alone, thank you for all you have given to us.

As always we send our love, hugs, faith, hope, prayers and a little laughter each day,

Patti and Dean

Dearest Bob and Dru,

Like you, Dean and I find it so very difficult to find words of comfort. Sometimes it is hard to find the words to express what we are feeling. I know that meeting you through this forum has helped Dean and I more than you could know.

Your friendship through your posts made Dean feel as though he was no longer going through this alone, although he wanted the outcome for the both of you to be different than it is now. We wanted to believe that both of you would get through this, and we would have an awesome 77th birthday celebration for two very special guys!

You and Dean will meet, and you will have a wonderful birthday celebration, You have both been through so much, and have faced it with dignity and courage. You are both heroes to Dru and I.

We hope we will continue to be in touch. You mean the world to Dean and I.

We are sending back (((HUGS))) to you and Dru, along with hope, faith, love and prayers. We are also praying for peace and comfort for both of you during this very difficult time.

Patti and Dean

Patti and Dean we are praying for peace and comfort, y'all are in my thoughts and prayers.....Billy and Tina

Patti and Dean. Dru and Bob, my heart just sank for you all. I know how it feels when the drs stop treatments. I went thru it with my Dad 2 yrs ago. They tell you of all the things that can happen at the end and thankfully none of that happened with Dad. Everyone is different. Dad did not go on hospice and was not in alot of pain, in fact he never complained of any pain until 3 days before he passed. I am here for all of you if you need an ear. Praying for you all right now.

Elaine

Patti and Dean,

We've been through so much together, at a distance, that it's hard to find the right words to say.

You've always looked forward, done what's best, and had so much courage. So let's talk about the future, not the past.

I hear nothing but praise for the caring people who provide hospice services. There's so much to be said for a peaceful environment, caring attention, and treatment focused on comfort.

If you want to read about what typically happens, medically, after treatment can no longer be continued, there's a forum thread about it, but of course nobody can accurately predict the specifics or the timeline.

I hope you can use your time to talk, reminisce, and love each other and those around you. That's what we should all remember to do, no matter where we are in the journeys of our lives.

I have nothing but good wishes to send your way and I will be thinking about both of you every day.

Dear Billy, thank you to you and Tina for your thoughts and prayers during this time. You are both going through so much, but you always take time to help other people on this forum. You are an inspiration to us.


Elaine, thank you. We have decided to go to Hospice because we are alone, no family and we both need support during these final weeks. My mother passed away in April, she was only in Hospice a short time, but they took wonderful care of her. They were also very supportive of my needs during this time. Right now, thankfully, Dean isn't in any pain, but he is so very weak, he can only take a few steps, then he becomes short of breath. It is so difficult seeing him go through this. Thank you for your prayers and for being here for me!

Neil, thank you for sharing the link with me. I do wonder what will be happening to Dean during these final days, I want to be prepared, but as I could see, each person is different.

Dean's counts are so very low. His labs on Thursday were: WBC is 0.5, has been low for months, but thankfully he has not had an infection or been sick. The RBC is 2.10, Hemoglobin - 7.8, but he did receive one unit of PRBC yesterday, his last transfusion. His oncologist wanted to get him through the week end. Dean's platelets were 8, they haven't gotten above 16 these last few weeks.

You are the one that has been here for me, and I thank you so much for that.

Dean will be leaving me with his courage and dignity as he went through all of this the last fifteen months. Many days he was stronger than me. He never became upset, scared a few times, but never angry that this was happening to him. He endured so much, but tried so very hard to say positive.

We both want to thank everyone on this forum for their kindness, support, inspiring stories, prayers and thoughts. You have become our friends through this forum and we have felt less alone because of you. Thank you to each of you who have posted to let us know we are in your thoughts during this time. I hope you know how much that means to Dean and I.

I always end with love, hugs, faith, hope, prayers and a little laughter each day.

Patti and Dean

I remember the day they gave dad his last. all his counts were really low too. he made it 1 day short of the month they gave him. Spend all the time you can and I know you will. enjoy the time you have left. I am now and forever will be here for you. Much love and peace to you. My heart breaks for you and Dean.

Dear Patti/Dean
 

You both an amazing couple - I am saddened by this and wish there is something that we could do or say to make things different. I so wish you love and blessing of God to help you thru this. Susan

Patti and Dean, and Dru and MagicBob, I am praying for strength and love for you. Dean and MagicBob, best of luck on your next great adventure.

Dear Patti and Dean & Dru and Bob,

All of you, along with your friends and families, are in my thoughts and prayers. I wish I could add something brilliant & profound, but really, there are no words. Thank you for sharing.

Here is a virtual group hug from all of us on Marrowfourums.