Be open to the gift of life no matter where it takes you

Be open to the gift of life no matter where it takes you

7 years.

That’s how long it’s been since Lennon’s first liver transplant.

When we made the decision to move forward with the transplant, there is no way we could have known of all that occurred after. All we had, was hope.

Hope that the transplant would indeed ease Lennon’s life. That it would bring us some kind of normalcy that didn’t involve going to the hospital 2-3 days a week.

During the month and years that followed, hope is all we had to hang onto. Hope that it for Lennon’s future become more about the quality of life rather than quantity.


Life is different now, improved and riddled with less anxiety.

How far is he’s come because of this gift and the lessons we all learned along the journey, I honor them. With each struggle, infection, and liver that Lennon was blessed with, we learned more about him, the way he shines his light into this world, teaching us what is open to the gift of life really means.

I say it time and again, Lennon doesn’t know what it means to be pissed off or hold it against people. And it’s beautiful. He gets mad like we all do at times but he doesn’t stay there. Instead, he bounces around the house singing or talking, usually having a conversation with himself or his game and periodically giving me a hug-attack.

There is no stress about how he is going to do something because he doesn’t believe that he can’t. Sure he does things differently, but don’t we all?

I say this every single year, but I am forever grateful for the families who have made the decision for organ donation during their time of grief. I don’t know who they are, but I love them dearly and like every year, I will light a candle tonight (and on the 21st for liver #2). Each family deserves to be remembered for the gift they have brought to this world.

And I encourage you to be an organ donor because you are helping change someone’s life for the better, and isn’t that the best thing to do?

I think it is.

Update: Insurance and Co-Pays

Update: Insurance and Co-Pays

In my previous post Insurance and Co-Pays, I shared the situation we are dealing with after changing plans recently. I had some big concerns about this plan that everyone will be part of eventually and they have been completely validated in my opinion.

I can’t seem to get away from mail order pharmacy because this is a specialty drug and all I want is to use our local CVS or something that can drive myself to.

Anyway, after some calling around this morning here is where we are:

I signed Lennon up for a co-pay discount program that will pay up to $200 dollars of the co-pay. Well, that still leaves over 300 dollars a month that I have no idea where it will come from except that I hope people will start buying my creations at Three Times Chaos. they are handmade and my passion for what I do!

Thanks to some help, I can get that prescription filled without insurance for $136 after the discount co-pay is applied – which is absolutely insane to me… because what is the point of insurance?

It’s a beast I don’t really understand except, money. I understand it is about money.

So again, if you are so inclined to help out, visit Three Times Chaos to purchase handmade items!

I am shaking my head as I am writing this because again, it shouldn’t be like this at all. Le sigh!

Transplant #3

Transplant #3


We just had a face to face with the docs. Umm Lennon is extremely critical. There has been some major blood loss… connectivity issues.. they have been giving him a lot of blood.. and done some temporary rerouting of some of the veins and such… they can’t find one of them (the portal vein.. its kind of important) so then they connected the artery for awhile so that the liver has at least some blood flow in and blood flow out… the docs are struggling… but they are keeping on… it ain’t going down without a fight.. but we are walking in the middle of life and death right now.. the doc said that they are happy with 20% of a functioning liver… it is more than what he had with the old liver..

please, prayers are requested .. and we don’t care in what form they are coming in…

Update #2

12 hours and counting…. they are still in surgery .. but the bleeding seems to be under control. Now they have to figure out how to properly connect it all together…find a portal vein… and so forth

Keep those prayers, thoughts, chants, positive energy.. etc still all welcome and working their butts off


So as I said in my last update the bleeding was under control… they have been able to make the necessary connections.. yes we have a portal vein… and vena cava.. and yes connections are happening… they didn’t reconnect the bile duct… that will come in a couple of days.. there is irritation and swelling going on in the belly.. and so they are going to give it some rest before they will go in again and make him completely whole!!

Lennon is not out of the woods.. so pardon me if I am cautiously optimistic with a splash of hope… he has some recovery to do.. and I haven’t seen him yet either… ugh.. he is going to ICU once they are done cleaning him up a bit and finishing the last pieces…

thanks everyone for being with us in spirit and prayer.

Update #4

Lennon is meshed up and heading to ICU… Dr. said this was one of the hardest, toughest and most difficult transplants he’s ever encountered… even though Lennon’s blood-pressure dropped and they may be some potential neurological concerns and even though he had some significant dangerously amount of blood loss.. his heart.. well it never stopped.. not one beat….

There’s a lot of technical stuff the doctor said that I won’t gross you out with… Lennon will go back into surgery next week to connect the last issue – the bile duct. In the meantime… Lennon is going to ICU to recover from today.. to start some healing process.. one reason they are waiting is to keep Lennon strong and make sure he can handle it.. they feel that if they wait with the bile duct surgery.. it will be better for Lennon due to the 15 hour marathon he just had in the OR.

I would like to tell you how I feel… but the words elude me at this time… I am anxious to the ICU to see him and let him know about all the prayers that were sent for him, about him .. well ok you know what I mean. I am beyond exhausted…and grateful to you all for being there/here with me in thought and prayer…

Oh, and can I tell you that the new liver IS WORKING!