Slight Update

So NIH has now created a new research protocol off of what they've learned from my sister's case. They're calling it the "Ptomey" protocol. This is the single greatest thing that could come from her fight. She'd be so happy to know it.

They're starting trials on children with leukemia now, children who have already relapsed after their first bone marrow transplant, much like she did. So hopefully her paind and strife will start saving children's lives.

But the fight isn't over yet... this is still research and the cure could be years away, even if they're on the right path. So any donations to the Leukemia and Lymphoma soceity will be key. There are so many people out there that don't have the resources my family had, and aren't getting the treatment they need. So every penny goes to helping them and their families thru their fights.

http://www.active.com/donate/ltnAlexan/2290_kptomey

Love You All,
-Paulie

R.I.P. :-((

Please send this to anyone who i don't have e-mail addresses for: (all are welcome to join)

As of 4:20am this morning (9/10/08) Kiki Ptomey has passed away. She died peacefully in her sleep while holding my hand. I'm not sure if she knew I was there, but I do know it was so peaceful that I had to be told she had passed away by the nurse.

Kiki's funeral will be this Saturday 9/13/08, @ 10:00am. She will be cremated, and her urn will be on display. We're looking to do a festive celebration of her life after the ceremony. The time and location will be announced as we figure that out.

For now all we have is the time and place for the funeral services:
10:00am, 9/13/08 @
Westminster Presbyterian Church
2701 Cameron Mills Rd
Alexandria, VA
1 (703) 684-2934

We are requesting that in lieu of flowers donations be made to "Kiki's Krew" at the Leukemia & Lymphoma Society: http://teams.lightthenight.org/KikisKrew
We will also be accepting checks made out to "The Leukemia & Lymphoma Society" @ the services.

Kiki's passing is a huge hit to all of us, and one that no one (friends and friends of friends) will be able to forget any time soon. She was the greatest Big Sister, daughter, Wife, and friend that any of us could imagine having. But she would have wanted us all to mourn quickly, and then move on to celebrate her life, as great as a gift as it was to all of us.

Thanks,
-Paulie

How do you write this?

As I said before.... Kiki was re-admitted to the hospital on Monday (yesterday). She must have had dorment cells in her bone marrow or brain where the chemicals couldn't get to them.

Her recent fights with virus's have kept her weak... and thru that weakness the cells were able to come out and play. On Friday she was clean of blasts, still. All was well besides the "normal" recovery stuff. Yesterday, she was admitted with an astronomical blast count, much like day 1 @ Fairfax.

Here's the tough part..... We are now setting up her house for Hospice care. She will have 24 hour coverage from hospice nurses, and more family around than the house can support. She's barely lucid, and asleep most of the time.

I need us all to pray to Jesus, God, Allah, Budah, Zeus, Mother Earth, and every other diety that we all believe in.... Please, please, pray with me that the doctor's are wrong. Please please pray with me that her bodies going to magically kick it again. Please please pray with me that this is all a bad dream.

We're looking at maybe 3 days here. I'm sad to say that she may not see this weekend. I also pray that, IF, she HAS to go, that it's quick and painless. She is such a fighter, and so strong, and she deserves so much more than this.

I'm sorry to break the news to everyone like this. I hope most of you have already received phone calls. If you have not I appologize. I will be at her side with Christopher, and my family, and his family every second of ewvery day. Please feel free to call me if you need more than this. But also remember that I may not have the strength all the time to talk to everyone. 818/231-4712.

On a good note she, she is comfortable, and not feeling any pain. And I will make sure that she stays that way.

Sorry, I'm all over the place in this posting. I just don't know what to say.

I love you all
-Baby Bro Paul

I will do another posting if there's any changes one way or the other.

Kiki's Status

Unfortunately I have to tell you all that Kiki's back in the hospital. Her Remission was longer than the last one... but still far too short lived.

I'll keep you updated, love ya all.

Hi Everybody

She's doin great. Things seem to be much better all around. Hopefully she'll get to leave the Hotel this month. 8-)

Love you all,
-Paulie

Continuing to Update

So Kiki went into the OR 2 days ago for a bleeding issue. She's doin great now, and it seems to have fixed all the issues. She's doin great now, and will be chillin in the surgical wing for a little while in order to heal up, all right and proper.

She sends her love to all!

-Love
-Paulie

Updating

Kiki's still in the hospital. We're trying to figure out why she's retaining so much fluid in her feet. They're still swollen. She's also still in a lot of pain.

On Saturday she had some heart issues, most likely caused by the meds. But they were able to stabilize her immediately. So all is well there.

But she's still looking like she's cancer free. She's even starting to make her own blood. So hopefully with some time, her body will just right itself. She's a fighter.

Love you all,
-Paul