Ana,

I love your post! I remember Ed's last post here:

"never stop fighting. one day everyone will be cured. god bless you all. you have meant everything to me.

ed
Posted on 01/10/14, 02:58 pm"

Many of us, including myself, did not the finality of this post. But I LOVE the enduring spirit of it-never give up the fight!!!!

Since Ed's relapse, Andrea's passing and now Ed's passing, this board has been cloaked in a shroud of grief. We briefly rejoice with all the amazing warriors on Team Transplant 2014 and then seem to slip back into mourning-at least I know I do.

Personally, as a chemo only survivor, I feel selfish intruding into the mourning by asking for support. I am fighting fear daily as my med team confirmed today that if my platelets drop one point, from 55, at my next lab appt (10 March) I will be getting my 8th BMB. Obviously, they are concerned enough about relapse, they are opting for marrowing me.

Your message is spot on to me-we must carry on Andrea and Ed's legacy of hope, inspiration, encouragement, love, and faith!!!!

God Bless You for Reminding Us!

Julie

I agree that we must rally to continue to support each other, those already here and the new people who badly need us. It is hard. I don't quite know how TO rally at this point, but I know we must. Those who we lost will always be with us and their message is clear: Do NOT give up, do not give up hope and do not give up the fight."

Keir came home from the hospital yesterday. As he was Facebook friends with Eddie, I had to tell him before he came upon it on his own. He is sad, scared, and discouraged, as well as grieving, as we all are, I know. And that is appropriate, such profound losses. But we also need to pull together as best we can. Julia, I will be praying your platelets go in the right direction and that you can be spared that bmb but in any case, perhaps you just may need platelet support - I was told by a nurse that some people just do for ages. Let us come together, honor those we are missing, and comfort each other.

My dear friends:

One more time.... we have a lot of pain to deal with. This is a must.

But, can we make a list of the persons in this forum who have had their BMT in the last 2-3 years, and are alive and living normal lives?

Come on folks.... I am also in pain.... but lets not get scared..... Do we make a list?

Ana,
Thank you for your post. Your words of encouragement and hope are wonderful. There are many people who have survived AML and give hope to us all. I know Cliff had a BMT and he is 2.5yrs, and some chemo only too, like you, Dave and Abby. I know there are others but my mind is kinda numb, chemo brain I think.

Julie~ Praying that all is clear for you. I think we focus so hard going through treatment that coming to the end is difficult and hard to find our way again. It is wonderful and scary all at the same time. Praying for courage and strength for you!

Lori~ Praying for Keir. Home! What a blessed place to be. Fatigue was a big issue for me but it will get better.

Take Care,
Suzanne

Thank you Ana, Lori and Suzanne.

Ana,

Great post, any new comers need uplifting posts when they first arrive.

I am 1 year 6 months and 15 days post transplant for AML with FLT 3 mutation.

Julie and Keir I thinking of you both.

Planxty

Hi, Ana -

I so agree that this forum needs Ed's positivity and fighting spirit, perhaps now more than ever. I trust that we will get there, and that all of us who were so encouraged by Ed and Andrea to keep love and hope at the forefront of our thinking will be back again to do our part.

With that said, I'd also like to express my hope that the forum remains a place where people can come to share the grief, worry, and sadness, that sometimes come with this experience, as well.

As we have been reminded, there will be sad outcomes for some of us, too, and knowing that others have weathered some of these same storms can be a comfort. I'd be reluctant to see us draw up a "list" of any sort, since to do so might have somewhat the same effect as would a glance at statistics/data around the prognoses for AML in general. Just my 2 cents...

xo
Robin

Robin, I understand. Yes. Griving and crying here is also needed. I completly understand what you mean and agree with you, too.

Blessings !

My mum was diagnosed in early April 2013, and was in remission after first chemo treatment in May 2013, two more consolidations and has been home since August 2013.

She is booked for a BMT on the 10th of March, which they have recommended even though she is in remission due to her initial diagnoses + age and they say that its best to give it a go when she is in remission.

Has a 12/12 match, and would have had the BMT in January however had to delay it when she had a Breast Cancer diagnosis (completely unrelated)

We kept her in a bubble, she followed every known rule known to AML treatment for every day during treatment, neutropenic or not she still followed all the rules and didn't waiver ... it all appeared to be over the top but she didn't have one infection the whole time :)

Julia, I had very low platelets for a long time after my last consolidation. I needed a lot of support. Hospitalization, injections etc. Now a year later I am at 175. Very normal. :)

Keep the faith friend.

Lily

Ana,

I know Eddie would want us to celebrate our continued survival. I also know that my grief over his death will settle down as I focus how well many of us are doing.

My survival to date post transplant:

2.48 years
or: 903 Days, 5 Hours, 21 Minutes
or: 129.03 total weeks
or: 903.22 total days
or: 21,677.35 total hours
or: 1,300,641.00 total minutes
or: 78,038,460.00 total seconds

I am grateful. Good health to everyone!

Cliff

Ana and All,
YES, YES, and YES.
Our Ed, was a shining light for us all and has left us all with a sense of hope and gratefulness. I am sure he accepted his passing with grace and dignity and was rooting for all of us, who are still in the battle.
I love Ed's memory,
Sandra and Ben

Cliff,
I thank God for you,
I know for sure, you are grateful for every breath you take.
I am using the Eucerin repair cream for Ben's gvhd skin problem,
it has literally repaired his skin,keeping it intact ( I use about three bottles a week hard on the budget) . We wait for dermatologist appointment. Thank you, Cliff, for caring.
Sandra (Ben's wife)

My husband Jimmy is 7 1/2 months post BMT (7/17/13) and doing great. All counts are close to normal range, clean BMB in Feb. and slowly starting back to work. Life is good.
Margaret

Ana -- I was hoping someone would start a thread in memory of Ed, and I cannot think of a better way to do it -- the ones who are writing on it -- including me, of course, are all survivors or caregivers to survivors, so effectively this is your list. If anyone is reading this and qualifies, please add your name and any info onto the list if you have not already.

For the record, I had my 4 year plus check up last Wednesday and all is, not only well, but significantly improved and consistently improving over the past two years -- platelets and WBC -- all continue to go up. So in memory of Ed, I am rejoicing and praising the Lord that He sent us Ed and that He is taking care of him right now. Our God is the giver of all good things ... sometimes we cannot really appreciate how good something is until we lose it. But as Job said -- we will praise the Lord both in our gains and in our losses. Thank you once again Ana for this great expression of love on your part -- dave