[Sandi1]

Dear Bety,

I haven’t been on the site for a while. I can’t believe it has been two years since my dad passed (Aug. 3). I recall that you did all you could for your Ed as evidenced in your posts.

My mother went to NY Hospital with dad each and everyday and knows that she too did all that was humanly possibly. I think you have a very similar tale.

Mom too was left to take on the responsibilities that dad had.Some days it can overwhelm. She recalls too how difficult his life had become. But now he is at peace.And that is what I am wishing you.

-Sandi

[Sandi1]

Hi,

I’m sorry about your father and wish you peace in the days ahead. After some time you may feel the sadness begin to fade a little. I hope then you’ll think of him and smile, your heart full of sweet memories.

Be well.

-Sandi

[Sandi1]

Dear Bety,

I have checked in on the site from time to time and hadn’t seen your postings in a while. I understood what that could imply.

You supported Ed through the three plus years of his ordeal with this illness. And I think he is at peace, and that is what I wish you now.

May your memories of your life together sustain you and may they give you strength during this difficult time.

In Sympathy,

Sandi

[Sandi1]

Hi,

My father felt his doctors were giving up on him two months before he passed away and he said so.
But we never gave up on him. He was moved to Calvary Hospital so that he could continue to recieve the care he required until his final day. Honestly, we were with him daily and took him out to the courtyard for dinner in his wheelchair. Insisted that he watch the news, monitored his intake of medications, massaged him when he needed it, and kept him engaged in conversation as we could. The last day we were together, we talked, fed him his last meal and kissed him good-bye as usual. The next morning, he passed. And we miss him dearly. So I say, take each day as a gift and live it as well as can be. I miss my dad dearly but know that he died in peace.

God Bless.

-Sandi

[Sandi1]

Dear Katie,

You haven’t heard from me, but I have been reading some of the posts about your dad. And today I checked in as I do very occasionally and learned about your loss.

Yours was a story of hope and it inspired all of us I think. And in the long days and nights of watching my own dad during his struggle, all we could give him was the hope that we held in our hearts and prayers until he left us in peace.

My wish for you is peace with the knowledge that you did the best that any loving daughter could do.

In Sympathy,

Sandi

[Sandi1]

Hello,

The greatest comfort you can have under these circumstances it to know that your father left in peace. You were there every step of the way. And that is the greatest gift you have given him.
I wish you and your loved ones peace today and in the coming year.

Best,

Sandi

[Sandi1]

Terri,

I am sorry for your loss. Your husband is at peace now after a long struggle. That may bring some comfort to you during this difficult time.
God Bless.

In Sympathy,

Sandi

[Sandi1]

Dear Linda,

Keep the faith and always hope that tomorrow things will be just a little bit better. When my father understood that his doctors (the team) had given up on him, he did not nor did we EVER give up on him. There are many different treatments that may be effective for your mom. The best advice for all of us is keep yourself informed.

Best,

Sandi

[Sandi1]

Dear Maureen,

I am sorry to learn of the loss of your dad. I lost my father last Friday morning also. May God be with you and your family during this difficult time.

With peace and sympathy,

-Sandi

[Sandi1]

Thank you Bety and Caroline,

I thank you for your support during this difficult time.

Bety, I have spoken of you and your husband to my mother as your husband is, and my father was, two of the eldest to be afflicted with the illness and that presents another set of variables to consider in terms of treatment options.

Our thoughts are with you. I hope that Ed is feeling better. Please take care of yourself too.

-Sandi

[Sandi1]

Thank you for your prayers. These days are very trying but I try to keep good thoughts about all the years he lived and loved. I am sorry to about the loss of your loved ones. Let’s keep strength in that which remains behind.

-Sandi

[Sandi1]

Dear Alice,

Hope your mother’s iron levels will diminish. My dad started Exjade in late May with iron of around 6500. He started at 500mg and then gradually was increased to 1500mg. His last iron record was approx 4700. That was several weeks ago. Hopefully he will recover from the heart problem.

Thanks and hope your mom will get stronger.

-Sandi

[Sandi1]

Dear Bety,
I am sure you are getting appropriate treatment in NY. I hope your husband will keep up the hope and determination through all of your efforts.
If the Exjade doesn’t arrive, do call them down South. We had to follow up with them several times for delivery. Bety, my father doesn’t have low platelet counts but low white and red. Keep up your spirits.
-Sandi

[Sandi1]

Hi Bety,

My father usually needs to receive a transfusion of whole blood (2 units) every two weeks. Having a low blood count of course causes him to be forgetful at times. After the transfusions, he feels better and can think more clearly. Exjade hasn’t helped with that. But I think it has helped him feel a little better overall. Right now he is still recovering at the hospital from his bout with congestive heart failure in June. He was on Revlimid at the time. He is getting stronger, his white cells are rising (?) but his reds are still the same. Overall, after all the treatments over the past several years, his blood counts have remained somewhat the same. But his blasts were eliminated. :- ) I wish your husband luck with the Exjade. And want to say that my parents have been together for sixty years (this Dec) also. God Bless.

-Sandi

[Sandi1]

Hi Bety,

My father’s ferritin levels were 5,300 or so. Then he began taking Exjade at the end of May. He started at 500mg and now is up to 1500mg. His levels have gone down to 4,700. It is still high but at least it is going down. His doctor reminded him that there hasn’t been extensive research done on Exjade for patients of his age. She wasn’t certain that it hadn’t produced negative side effects but he believes he needs to continue with it. There aren’t many options out there.

-Sandi

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