Earl Continues To Go Down Hill

[milliken2]

Hello All;
Well - here we are again. Earl begins his third week off Dacogen, and continues to decline. He has received 10 units of blood in a 21 day period, along with 4 large bags of platelets - with no successful result. The BMB after the 4th session of Dacogen showed his blast count had increased 2%, and we haven't had a week of decent numbers since. The highest his hgb has gotten in 8.3 - and the platelet count goes from 6,000 up to 14,000. I think one time early on that the platelet count hit 43,000 - but we haven't seen that level in months. He has no appetite, and of course is weak. He doesn't even come to the kitchen anymore for meals - I bring them to him in his comfy chair on a tray. Even the dog seems to be distancing herself from him. She used to be right by his side, now it seems she is more with me. Maybe she thinks I need comforting, and she knows where we are headed.
I do have an emergency call in to the GI doc to see if we can get him in there and have and upper and lower GI done, as well as swallow the camera to look at the jejunum (middle section of the bowel that the scopes can't reach). I have also made a follow up appointment with Dr. Sekeres at the Cleveland Clinic - the fifth of September. It may sound like I am grasping at straws, but I am certainly not willing to give up either.
Thanks for listening.
Beth

[Sally C]

Dear Beth,
I am so sorry to hear this. You and Earl have been through so much and in spite of that, you have been so helpful and supportive to those on the forums.
I pray they will find something to help you.
God Bless you both,
Sally

[PattiDean]

Beth, this is so sad to hear. You are not grasping at straws, you want so very much to help Earl. You are not giving up.

I can certainly understand Earl's weakness, Dean was there three weeks ago just before he was readmitted to the hospital. Dean does not even remember the first two days he was there. The most difficult part when Dean was in the hospital was coming home to an empty house.

I agree with Sally, you and Earl have been through so much, and you are one of the first ones to be there to offer help and support to others. I am one of those people you have been there for.

Dean and I will keep you in our thoughts and prayers.

It is funny that you mention your dog distancing herself from Earl, our dog does the same to Dean.

Lots of hugs are being sent your way, Beth.

Patti

[Greg H]

Hey Beth!

I think the move to see Sekeres again is a smart one. The Dacogen certainly doesn't seem to be working; it made sense to give it a shot, but it's definitely time for plan B.

I feel confident that Sekeres will have some ideas about next steps.

Take care!

Greg

[milliken2]

Sally, Patti & Greg;

Thanks so much for all of your support. Me - I don't do anymore here than anyone else does - but thanks for the kudos nonetheless. Greg is the one who is more informed, and on whom I rely a lot of times - Thanks Greg.

And you all know that I am here for any of you if you need me - Greg already has my cell number (Because I have badgered him) but anyone can PM me or email be at the regular email addy, and I will be glad to give it to you.

Being a nurse is good and bad - bad because I can't really help the one I love the most - and good because I won't let the Docs bully me. They all know that I don't accept that attitude that because they are the Dr - I am not supposed to ask questions - WRONG - I will always question them and have fired 2 Docs because of their attitude. Don't mess with this lady when it comes to her husband!

((((HUGS))))
Beth

[milliken2]

Hi All;
Well - we went in for Earl's blood draw - he was so weak I had to take him in in a wheelchair. His Hgb was only 6.3, and his platelets were down to 8,000. This is after him getting 2 units of blood and one large bag of platelets this past Friday - the 10th. So we are scheduled for 2 more units of PRBC's and one large bag of platelets tomorrow. Where is it going - and am I looking at the final downhill slide?
I did get an emergency appt with the GI doc on Wednesday - the consult - because I want him to have an upper and lower GI, as well as swallow the pill cam to look at the middle section that is not viewable with the scope. Then we go back to the hema/onc on Thursday - was supposed to be tomorrow, but the blood takes precedence.
I am at a loss - don't know which way to turn, or what I am in for.

Beth

[Sally C]

Dear Beth,
I want you to know that you both are in my prayers.
God Bless,
Sally

[PattiDean]

Beth,

Dean and I will keep you and Earl in our prayers! It isn't easy hearing what you and Earl are facing and I know you must be so scared. I wish I could reach through my computer and give you a hug and let you know we are thinking of you!

God Bless, and we will keep praying for good news!

Patti and Dean

[maria&lola]

Beth: You and Earl have my earnest prayers as well. Your post reminded me of how bad off my mom was when she was on the Revlimid. We were using a wheelchair as well because the trek through the hospital was unthinkable. She was so weak. We were in and out for transfusions every few days. Those were rough weeks indeed.

I do hope you find an alternative to the Dacogen which of course, is strange to say since I'm hopeful that Dacogen is the magic medicine for my mom.

Stay strong and take care of yourself, as well. I think I was in panic mode with my mom and once things settled down it has hit me like a ton of bricks. I can't imagine going through those weeks again and yet I know I have to be prepared for anything. It's a tough row to hoe.

[Birgitta-A]

Dear Beth,
We hope that supportive treatment will help Earl trough this difficult phase of the disease! As you know it is not dangerous to need many txs - hopefully the platelets will stop the bleeding and his bone marrow will have time to recover.
Kind regards
Birgitta-A

[donna j.]

Dear Beth,

I just wanted to throw my 2 cents in. Focusing on the tx is most important right now. My doctor would not let me begin with a gastro specialist until my counts rose and were steady. She was too concerned with infection or injury.

I agree wholeheartedly with Birgetta's response.

Good luck, there are definitely good days and bad days, its a process. The low counts from the other day are not the be all and end all, don't think that.

Donna

[milliken2]

Sally, Patti, Maria & Lola; Brigitta; & Donna;
Thank you dear ladies for all of the support and especially the prayers. At least his appetite improved today - but then again - he didn't know he had a 10mg dose of marinol. If he knew he was taking it - even though it is prescribed and distributed through the pharmcy - he would still be against it.
This is probably the first day in over a week that he has had an intake of what I call over starvation level. I am hoping that the weight continues to increase.
Donna - I understand what you mean - and I agree - it's just that we have to get in for the initial consult before anything is done, and it's very hard to get in to this particular Dr.'s practice. They are ones that I trust, and use a facility that is much improved over our regular small hospital. Of course - I would never put his life in jeopardy - that's why I monitor all of his meds, coordinate all of the Dr.'s appointments - and all the other stuff that goes along with being a wife and a nurse. Yes - sometimes I just want some time to myself - but then I stop and think - and realize that I want all the time I have with him, no matter how stressed I feel.
Again, thanks to each of you.

((((HUGS)))))
Beth

[bebop]

Beth you both are in my prayers. I know how hard this battle is as a daughter. I use to cry every time I left my Dad. We are all here for you.

[cathybee1]

Hugs, Beth

[milliken2]

BeBop and CathyBee1;

Thank you both for caring - it is at times like this when I read the posts of others that some of the burden seems lifted from me. We went to the GI Doc today - and of course - they want Earl to have 'further' studies before they even consider any testing - they want to schedule an CAT scan of his abdomen, get an EKG and possibly a heart cath, and of course continued blood work. More money that does not need spent. We already get the blood work twice a week as it is - isn't that enough?????
Again - thank you all.

((((HUGS))))

Beth