2/5/19 Update from Shawn:
Ok...update...these just keep getting worse. Sorry....
Sunday evening, Jason was essentially unresponsive. I called hospice and they suggested and ambulance. When the EMTs arrived, Jason's blood sugar was 46. They immediately gave him glucose, and he "woke up" almost immediately, but was not himself. He remembers "laying down" on the couch, which happened at about 11 am and then the EMTs and firemen being there, with was 10 PM. Once he got to the hospital, he started to make a lot more sense.
The long and short of it is that his kidneys were in the beginning stages of kidney failure, his blood sugar was crashing and his blood pressure was extremely low. He had dangerously high levels of Potassium, but that is part of the kidney issue.
He has been in ICU since Sunday night, but is now being moved to a regular room. They can still only give him limited pain relief, as they are trying to protect the kidneys as much as possible to see if they start functioning again.
Eventually, his kidneys and/or liver will no longer be able to function because of the cancer. At some point (today?) they will be doing an ultrasound to check on the growth of the cancers. He is also being moved out of ICU to a regular room, and he is improving, but we still have a way to go, and have many decisions to make like whether or not to go on dialysis and how much intervention he wants in the event things go badly.
Please pray for our family to make the right decisions where there are no "right decisions". Pray for control of pain and peace of mind for Jason. Pray for strength for me and Jason and our children. Pray for the hands of the doctors and nurses and staff that continue his treatments. Pray that God's wishes are fulfilled in our lives now and going forward. Just pray. Please.
And don't worry - all of your who have offered assistance, there may well be a time I need you. I will not hesitate to ask, believe me.
1/30/19 Update from Gary:
Jason is overwhelmed by the love and support with this and all the people that came out for Hacienda's Gives Back night. He has started his services with hospice and they are trying to control his pain levels, while being able to let him enjoy time with family and friends. He struggles to eat and the stomach pains are getting worse. We have met our new goal of $5000, but we really would like to keep going for them. When I showed Jason that we hit the goal last night at Hacienda, he literally sat down and turned to me and said, I'm worried these people need the money more than I do. With everything he's going through, the struggles he quietly endures, he is still worried about everyone else, more than himself. Is there any doubt on why his friends and family love him so much?
From Jason (1/16/19):
I had a second appointment with Dr Sehdev yesterday at IU Simon Cancer Center. My options right now are 1. enroll in a trial study for two different medicines. I would have to stay at IU for 5-7 days. A week or two off. Then stay another 5-7 days. This would go on for a year or however long I can take the side effects. Nausea, vomiting, kidney failure, liver failure, and others. There is a small percentage of success with this trial.
2. Or I enroll in hospice, they will manage my pain levels. I can go there or they can come to our house. And I would live out my time.
The Dr did mention something about DNA testing on the Melanoma. They would take out some from my neck and liver and test them.
Basically, this melanoma is growing at a fast rate. It's a very aggressive cancer. I've had 2 CT scans recently and there has been new melanoma on my liver and the last one showed melanoma on the inside of my skin.
I need to make the choice. I'm terrified. With the trial there is a small chance of it fixing it. But if it doesn't then I've wasted time with family and friends. The hospice way feels like I"m rolling over and letting cancer win. Just something I need to think about.
People keep asking what they can do for me. And I keep saying I don't know. If there was something I needed I would ask for it.
I do have a favor to ask of everyone. When I do leave this Earth. Help Shawn, Devin and Reggie. Probably Reggie more. He is an emotional little man. And I know what it's like to loose a father at 13.
Whether I do the trial or do hospice and ride it out. I'm putting it all in God's hands.
I really want to keep fighting this if I can.
Jason Hillenbrand is an F.J. Reitz High School graduate who is a husband and father of two kids. He has a huge heart and he would do anything for his family and friends. He has worked hard all his life to provide and to inspire. He's the quiet guy who does things for others, but never tells anyone or brags of the things he's done. He just helps and wants nothing for it, but now he needs our help.
Something he has shared with only a few, is his battles with cancer. He just did the treatments he had to, kept working hard for his family and kept moving forward. He battled kidney cancer and last year had a 5-year clear mark. Then a mole on his ear turned out to be melanoma and it had to be removed. This spring, he was diagnosed with a metastatic melanoma in his neck. While battling that, they found microscopic thyroid cancer. With surgeries and Opdivo immunotherapy, he's been battling hard. Just dealing with the illness, while working and still doing things for others. This paragraph doesn't begin to do justice to all the things Jason has just handled on his own, battling and still moving forward in life. Jason is truly a comic book superhero, only in real life.
On October 2nd, Jason hadn't eaten for days and was cramping badly. At first, he was assuming it was just side effects from the immunotherapy. However, when it got bad enough, he finally had to leave work and the doctors wanted him to go to the ER. They did a CT Scan on his lower abdomen and unfortunately, they potentially found more cancer on his liver and spleen, along with some in his neck again. They are awaiting other test results along with actively working with doctors on a game plan on what to do next.
While you know, Jason would never ask this... we all know how hard this is on the family financially. Fighting for your life is not cheap. Jason & Shawn did give me permission to set up this GoFundMe account so that we can try to help him and his family. For someone that just gives and gives of himself, we hope to be able to return the favor. Not only just sending prayers his way, but hopefully to help ease a little of his worries while he battles.
We ask that you please consider helping out on the fund for him, along with sharing this link and getting the word out.
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