Most Difficult Thing I Will Ever Have To Do (Advice)

[Reylan Talonspyre]

Well, the news went from horrible, to disastrous, to a glimmer of hope.

Yes, I am a bit shocked and that sentiment comes from many.

Despite doctor's prognosis, Pat has stabilized. The doctors and his family attribute the constant stream of friends and loved ones to his hospital room. More are still coming and it is now being spread via word of mouth, not my poor, overworked Blackberry.

The news that came down the pipes is that there is an experimental and risky procedure that may give him another shot. The family is waiting for Northwestern to give the OK to a sort of mixed stem cell treatment (his third). His vitals are good enough to try the procedure but the doctors have warned it may have unforeseen consequences, opening up a "Pandora's box".

Well, his sister will probably be in touch with me tomorrow to let me know what is going on with the procedure. I find myself believing that he will pull through it. I had remarked to his sister that he has so much life that if anyone was deserving of a miracle it was him. Hell, he is a good enough person I would switch places with him instantly, because I believe him to be worth a million of me.

Something just has calmed inside of me, not through depression or the dizzying pace he degraded after I saw him. 2010 has been good to me. I had once remarked to him while talking over coffee that I was destined for a good year. A year to make up for the last couple horrific years. A reckoning of sorts, to even up the score. He laughed and said, "Yeah, well that is nice, I have cancer."

I laughed and made some comment about how he shouldn't have masturbated so much.

I told him that he was part of it. He would beat cancer and come out with a new lease on life. It was part of God's grand plan, but only part of it. 2009 and 2008 saw some loss on my side. Depression. Angst (see all prior threads). Bad Bad Bad Decisions. Yet it is in 2010, after a horrendous New Years Eve, it all started to turn around.

New job.
Reuniting with old friends.
America's waking up from the ether of the Obama election.
Quit smoking.
Promotion at new job.
More time with my own family and my 10 year old sister.
So much more, I don't want to tell because it seems like I am gloating.

But when I told Pat that he was part of it, he was going to win this war, I meant it. I believed it. I still do. I am not ready for him to go and he is not done fighting yet. He has said, "Nutts" to leukemia and it is time for risky decisions.

Already friends from 10 years ago have come back around. Things are changing, but not in a negative way, they are changing for the better. Reunification of a very large and unwieldy group of friends. Connections between each other without any forcing. Pat is bringing them back together and mending the old wounds even as he lies on his death bed.

He will continue to inspire and do the same.

Thank you for thinking about me. But think of Patrick Sullivan. Send him your prayers. He is important to a thousand people around the world and he will continue to be the reason for so much more.

He will beat this.

He has too.

The god damn Irish are never that easy to kill or eradicate.

On a side note, his fight means even if he does not win the day, he went down swinging, not wasting away with nothing left except tears. He went down fighting for his life and that means something. It means something to those watching that there is hope for us all. Good night, hug your loved ones, call your old friends you haven't seen in awhile. Don't let bad news be the only reason you contact them.

We only live one life here on Earth. When it is over, it won't mean a thing except to those left behind. How do you want to be remembered? I know I want to be remembered like Pat Sullivan. It is sad that I only realize that now.

[losmar]

Don't be sad it took til now to realize, be glad you realize it. Follow up with it in action.

Good news indeed!

[Sturm]

Nice.

[TEVA]

Patrick Sullivan is lucky to have you as a friend.

[Reylan Talonspyre]

No, I am lucky to have him as a friend. We got to chat via text message today. I enjoyed that. Just like old times.

[Reylan Talonspyre]

So here is the a post from Pat's sister on Caring Bridge.

This is truly amazing:

My father always knew that you never told a Sullivan female that you had an empty bag...cause she would find a way to fill it up! The doctors at NWMH have now learned that lesson! As many of you know, last week, we were told by Pat's doctors that their "bag of tricks” was empty…well, today we received the news that there may just be a few more tricks in there

About 10 days ago when it became clear that Patrick’s second transplant had also failed to graft and some infections were starting to surface in his body the picture was very bleak...but a remarkable thing happened while the six of us tried to absorb the shocking news...our amazing family and friends joined forces and provided the impossible...a miracle. Now the fight is far from over but what happened last week on the 15th floor was as close to a miracle as I have ever witnessed (and I have given birth four times)! With every visitor, phone call, email, letter and prayer the people in our lives with their love and support helped a body with no defenses of its own fight off some pretty nasty stuff!

With Patrick’s condition more stable his doctors are now going to go back to the stem cell registry and see if they can get approval for Pat to receive another non-related 10/10 donor transplant and to find out the timetable to get one completed (time is still of the essence). Another choice they are discussing is to do a second sibling donor transplant and a third choice is something that they haven’t really tried before…a random donation from stem cells they already have in storage. For the random donation transplant they are trying to find cells that are as close to Pat as possible and as it sounds so far they are having some luck identifying some good matches. We hope to find out what path we will be taking next within a few days.

I know I have said this on here many times before and I have meant it each and every time but this time it is coming from a place in our hearts I didn’t even know existed. Thank you all so much for the tremendous amount of love and support you have given each and every one of us during the past 22 months and most importantly over the past 10 days…for the most part I do believe that the strength you need to make it in life comes from within yourself but what I just witnessed proves that during those times when you can not possibly go that deep inside to find that strength on your own all you need to do is look around to those who matter most and you will notice that they are holding you up without even saying a word.

My group is returning up to NW Thursday. He is posting again on Facebook and is texting when not drugged out of his mind. I agree with his sister, this battle is not yet over.

[Reylan Talonspyre]

Well, after repeated visits, and one of those visits having him walking about and doing a sort of seminar on his treatment options, it would indeed seem that we have a bonafide miracle. Today, at around noon, my good friend of 12 years, began his fourth round of stem cell treatments.

I was informed, most people don't survive one treatment if they fail. Two is even less. This far out, well ... it is fricking miraculous. Pat's doctors figure that since some of his stem cells from the 1st treatment were still there, even though the others died off, his immune system or at least the antibodies left over after chemo, were killing the inbound stem cells.

As he explained it, the stem cells entered, killed the cancer, then died off. I believe I made some comment about him having the '46 vintage stem cells of a Japanese man. Point is, the doctors are now finishing up on the newest plan.

1. Kill the antibodies through a form of dialysis that removes the good things from the blood instead of the bad.
2. Inject new stem cells.
3. Profit.

He received a non-sibling donor match from the registry, who also thought his condition and the way he fought back were grounds enough for a new batch of stem cells. Sweetness. Northwestern Memorial has been amazing and they have done everything they can to get him to this stage. Now, we wait. His chances for Graft v. Host and Host v. Graft responses are low. Meaning, he is unlikely to be killed by the graft (GvH) and unlikely to kill off the graft (HvG).

He also revealed to me, saying, "I am 37 years old, Jordan, they had to tell me I was dying." that he knew since day one, but didn't think I would have sent everyone. He played it strong, which is good, but Mike, Heather and I got the idea ... he was scared and now he isn't.

I am not either. He is going to do it. He will put his foot on the throat of Chronic Myeloid Leukemia and double tap that bitch once and for all. This week is important. The stem cells are to begin rebuilding themselves immediately.

Prayers for a stranger to most of you are absolutely welcome.

Thank you for listening to my ramblings and thank you all for your support.

[tubs]

I'm so glad to hear he's beating this. Keep us updated.

[losmar]

So, this is what it means to be kicking ass and taking names eh?

Tell him to keep it up.

[Reylan Talonspyre]

Just got done telling him just that.

The best part is he is conscious and talking. He says he knows it is now or never and that his faith, something he holds quiet and dear to him, has steadied him during this time. His doctor has said that with the way things were looking a few weeks ago, Pat should not be alive. In his professional experience, people don't come back from where he was. Of those same people even less get stronger when faced with the fungal and bacterial infections he had acquired. And of those people, the Stem Cell Registry does not usually give a new donor within three to four days. AND OF THOSE PEOPLE to get a perfect 10/10 match is even less likely, yet here they are. He is that 1% chance.

Now it is just a matter of time. As I told him, "Well, you don't put a condom on unless your looking to fuck." (Crimson Tide). He laughed and told me his missed our boring old county. I told him, apparently, the whole county misses him because they all drove down to Chicago to see him.

He knows the score. I told him it is good that he is fighting and that it has taught everyone around him about the strength of spirit and will. He says that when he met his cousin's kids for the first time last week, he knew he had to stick around for them, and for all the friends he has.

He knows he is my hero as well as many others out there who love that man.

The fight continues!

[owly]

He sounds like a fighter i hope he leads a long life

[Venus]

thats awesome news:)

[Nagash]

Sorry to hear about all this, mate.

I'd like to warn you not to get your hopes up too high though. A sickness like this has its ups and downs which can swiftly, unexpectedly and mindbogglingly follow each other. Keep suppoirting him like you do and keep hoping for the best, but meanwhile make sure you don't lose sight of reality.

Good luck, mate. I think you're doing a hell of a job at supporting him so far.

[Reylan Talonspyre]

Just an update. He has started to fight back against some invasive fungi that he has in his body with healthy white blood cells now. It would seem that his immune system is rebuilding itself and the third/fourth (can't remember which) stem cell transplant is working.

He is having a rough time though, because it means the fevers and vomiting are back too, but it means he is having the proper reaction to the fungi.

[asoc]

KICK HIM IN THE NARDS
KICK HIM IN THE NARDS

HE DOESN'T HAVE NARDS!!!

DO IT!!! DO IT!!!

Fungis got nards...