Earl is in the hospital - he has had a stroke

[milliken2]

Well - we are going from bad to worse. Earlier in the week, I noticed that Earl's thought processes were not 'normal' - he would ask about things that were not here, or just make a statement that was not with merit - like asking me when the maintenance man was coming. That same morning, I noticed him drooling - which he has NEVER done, and Micheal and I took him to the local ER. His platelet level was 5, and his Hgb was 7.5. WBC's were only 0.5, so they sent him to the telemetry floor - and after several hours - with me reminding the nurse what had to be done, they started a transfusion of 2 units of PRBC's and 2 units of platelets. Mind you - the day before he also got 2 units of PRBC's. He was put on reverse isolation precautions - but it amazes me how many staff have no idea what that means. I finally had them post it outside his door, and have the masks and gloves there.
They did a head CT in the ER, and said it showed nothing - but the ER Doc and I also thought an MRI should be done - which they finally did late yesterday afternoon. At frist - they told me there was no sign of stroke - from the CT scan - but then today, they told me the MRI showed a small brain bleed in his left ganglion. He is not paralyzed, and shows no sign of facial drooping - but his thought processes are not what they should be.
Finally, tonight - his hema/onc stopped in, and he said to stop the Revlimid - and in his opinion, there is a 5 to 10% chance of the Vidaza working, and he left it up to Earl if he wants to continue. He also wanted to place Earl in an inhouse Rehab facility , but Earl does not want to go to another hospital type environment. The Dr. said he would check with the social worker to see if the insurance covers at home therapy.
I know why Earl doesn't want to go to another facility - our 42nd wedding anniversary is January 16 - next Tuesday - and he wants to be here with me. I will do whatever is best for him - but in all honesty - I want him home too. I am exhausted - just trying to make sure things are done right, and poor Hannah has spent so many hours in the house by herself - and has never left me one mess. She is such a good dog, and every time I come home - she runs out the the van, and looks for Earl. She actually pouts and looks so sad.
So Dear friends - your prayers are very needed and appreciated.

Beth

[Neil Cuadra]

Beth,

My wife and I are very sorry to hear about Earl's stroke. We're thinking about you and Earl and we very much hope that Earl's confusion will lessen and that you'll soon see signs of improvement. We've had first-hand experience with the kind of confusion that patients can have from strokes or sometimes from medication, and it can be very disconcerting. But brains are remarkable and can sometimes fight through the fog and return to normal thinking.

Your upcoming anniversary is quite a milestone no matter where you are. My wife was in the hospital for some of our anniversaries. It's decidedly unromantic but it's still another chance to appreciate that you're together.

We know how hard this has been for you and we wish you all the luck and strength in the world.

[Sally C]

Dear Beth,
I am so very sorry to hear this. I know you both are exhausted - you have been through so much.
I have been praying for you and Earl and will continue to do so.
God Bless,
Sally

[maria&lola]

My thoughts are with you and Earl, Beth.

Hopefully, discontinuing the Revlimid may have some positive affect if it just wasn't working for him. It really did a number on my mom, wiping out all her counts and making her the the sickest I've seen her since this battle began.

God bless you and keep you.

[Lori Patrick]

Beth, I will put you and Earl in my prayers. Be sure to take care of yourself through this. I admire caretakers in the process of these diseases. May Blessings be with you.

[PattiDean]

Beth, so sad to read your post this morning!

I understand what you are saying about Hannah. When Dean was in the hospital, Pebbles was left alone for hours also, but was a good girl. When I came home, she would cry for Dean, broke my heart. Wish I was closer so I could help you with Hannah.

We will be thinking of you on your 42nd anniversary, and we do hope that you and Earl can be together on this special day.


You and Earl continue to be in our thoughts and prayers. Sending you lots of (((HUGS)))

Patti and Dean

[LJacobs]

Dear Beth,

I am very sorry to read of Earl's stroke. I hope he is able to make a comeback, and able to spend your anniversary together with you. I agree with what others have written. It doesn't matter where you celebrate. You'll be together. It is a true love story, yours and Earl's. I send you both love from Seattle.

[Birgitta-A]

Dear Beth,
How sad that Earl got a small brain bleeding - hope it will disappear. I am really feeling with him because I am almost sure this will happen to me some day. Hope you will be able to spend your anniversary together!
Warm regards
Birgitta-A

[slip up 2]

Beth....hope the counts will improve now that Earl is off the Rev.....give that man a big hug for your anniversary.....maybe in the sunshine....Kate

[Cheryl C]

Dear Beth

I am praying that you will experience God's comforting, loving presence during this very difficult time and that He will give you wisdom in your decision making. I do hope that you will be able to spend your anniversary together in peace and happiness.

[bebop]

I am so sorry about Earl's stroke. As you know with platelets that low it can cause bleeding anywhere. I hope he improves quickly. Keeping you both in my prayers hon.

[Al's Wife]

Beth,

Al and I aren't too far behind you and Earl. We will be celebrating our 41st anniversary in April. My prayers are with y'all, as always, especially as decisions are having to be made. Hopefully you will be able to get home therapy and Earl will be able to be at home with you on your anniversary. My heartfelt prayers are with you both. I so despise this disease!

[rkp]

Dear Beth,
Very sorry to read this. You have been through a lot.
Praying for you and Earl and hoping that Earl will feel better and your upcoming anniversary will be peaceful.

-RP

[milliken2]

Hello Everyone;
Thank you all so much for your concern, understanding, and most of all your prayers. I can't even begin to tell you how much it means to have your support.
So - tomorrow they are supposed to come here and set up his ICP (Individualized Care Plan) - but that means he won't get any therapy until Tuesday of next week, since they don't do it on the days he goes for blood draws - but I told them - it is going to be difficult - since he might have to go in the following day - or the day therapy is scheduled for a transfusion.
But - we did get home around 6 PM - toasted each other with a glass of wine - and he was off to bed shortly thereafter. It has been a long week for both of us. But hopefully things will improve.
Again - thanks everyone.
Beth

[PattiDean]

Beth, I received your phone call the other day, but I wasn't able to get back to you, it has been a hectic and stressful week. :-(

I sent you a message through the forums, not sure if you were able to read it.

I was thinking about you and Earl yesterday and wondered if you were able to spend time together for your 42nd anniversary.

I do hope that Earl will begin to improve, it has been so difficult for the both of you, and it has been a long time. You both need some good news.

I know how hard it is to schedule any appointments, you never know what tomorrow will bring. We don't know from one day to the next when a transfusion will be needed.

This was suppose to be Dean's treatment week of Dacogen, but his counts were low, so it was postponed until next week. Neupogen and transfusion this week. Anything we had planned for next week is now put on hold because it will now be treatment week. :-(

Please let me know if you were able to view the message I sent. I will try to call back, but sometimes it feels like I never get a chance to sit down. I have to take my mom to her doctor in a little while, and this morning Dean had his appointments. Tomorrow Dean gets a transfusion, so hopefully he can begin his treatment this Monday. He is doing okay, his counts just don't improve. :-( Oh, and in the afternoon, my car has an "appointment".

Love, faith, hope, prayers and, of course, (((HUGS))) for you and Earl.

Patti and Dean

[Sally C]

Dear Beth,
Best wishes for your 42nd anniversary. And again, I am so sorry for all you and Earl are going through. I wish I was there to help in some way.
Dear Patti,
I wish the best for you and Dean. Like with Beth, I wish I was close by so I could help you as well.
Prayers and God's Blessings for all of you.
With love and (((hugs))),
Sally

[PattiDean]

Good evening, Sally,

How are you? How is Don?

Thank you so much for your caring post! You helped Dean and I so much when we first found out about his MDS, answering so many questions, and talking on the phone with me for hours, addressing my concerns. I have never forgotten how kind you were to me when I needed a shoulder to lean on.

I think with time Dean and I have accepted what the future will hold. We are trying to make the most of each day together, although that isn't very easy at times, our days can be overwhelming, but some days are not as stressful, and we make the most of them.

Your prayers and blessings help so much, thank you Sally. Thankfully the forums do make you closer, although we are miles apart.

I have some wash waiting, so I will say "Good Night". Thank you for your lovely post, Sally!

Love and (((HUGS))) always!

Patti and Dean

[Sally C]

Dear Patti,
Thank you for your kind words. I hope in some way I did help when you and Dean started this uncertain journey. But always keep the faith - things can surely turn around as they did for Don.
We are going back to NIH next week for Don's 6 month BMB. No problems, just part of the research.
He is doing very well although we are going to need to do some testing for his dysfunctional platelets. His hernia is so big we are going to have to name it at some point but we need to figure out what to do about his platelets first - not only for his hernia but also in case he should need some emergency surgery sometime in the future. The count was over 100,000 last check but that doesn't mean much if they don't clot.
I pray for you, Dean, Beth, Earl and all our Marrowforums family best wishes and God's Grace in the future.
Please feel free to call anytime - I've missed talking to you. And thanks again for your kind words.
God Bless and (((hugs))),
Sally

[Mac]

My prayers are with all of you.

[PattiDean]

Sally,

We will keep you and Don in our prayers, especially for your visit to NIH next week.

Hopefully you will find an answer about Don's platelets, you have to be very concerned thinking about an emergency happening. It sounds like Don is going to have to have surgery for his hernia, but it is like a Catch-22, he needs surgery, but can't until they figure out how to take care of his platelets. It is like going around in a circle and you can't get off. :-(

Keeping you in our thoughts Sally. Please let us know what happens at NIH.

I miss being in touch, sometimes it feels like there is not enough hours in the day to get everything done.

Hope you have a nice week end. We are going to rest, and maybe head out to dinner tomorrow.

Lots of love and (((HUGS))) always Sally!

Patti and Dean Darby

[milliken2]

Hello All;
And thanks again for caring about Earl and me. I cannot even begin to tell you how much it means.
We are headed to the hema/onc's office this AM to start his sixth session of Vidaza. A positive note on that is he has now gone one whole week without a blood transfusion - but I can assure you - after his labs are done this AM - he will need one. But - it is still a positive step, and one that I thank God for each day. I am so hoping that it will continue. Now - we just have to deal with the stroke part. I was not at all impressed with the Physical Therapist that they sent here - finally - on Saturday. I thought it strange that the PT would come out before the nurse - since they cannot set up and ICP. He and I differed on several things - he thought I should take him to the Dr. for his injections of Neupogen and Procrit - and like I told him - repeatedly - there is no need. Then he tried to instruct me on orthostatic hypotension - in other words - don't get up fast from either a sitting of lying position as your blood pressure may drop - and again - I told him that I was very well aware of that issue. There were several other things that I thought he should be doing - and he didn't - so we will see what tomorrow brings when the regular PT arrives.
Again - thanks to each of you. I hope everyone else is faring better, and will try and keep you informed if there are any changes. We still have our appointment at Moffitt on February 5th to see Dr. Lancet - and then see if he can be included in the Eltrombopag study they are doing there.
Beth

[Al's Wife]

Praying for both you and Earl. We are having a rough time too. Some days it seems God thinks we are stronger than we are. Good luck at the doctor's visit today. Lots of us could use some positive news right now.