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Jacob (left) and Parker Harley share a laugh moments before the surgery where 60 percent of Jacob’s liver was given to his brother. Brotherly love… Parker Harley receives 60 percent of his brother Jacob’s liver; feeling good a week later at Ho
ANDY FASNACHT Review Editor email@example.com
, Staff Writer
More than a week later, Ephrata’s Parker Harley still can’t fight back the tears recalling what he kept saying to his brother in the days leading up to the transplant.
"I told him every time (we talked) that he didn’t need to do this," Parker said when asked to describe what it means to have his brother do this for him. "He’s hardheaded – we all are.
"There are no words," Parker continued. "He put his life on the line and put his life on hold for three months. There are no words to say how much I love him right now."
On Monday July 1 at Johns Hopkins in Maryland, older brother Jacob Harley, 24 and a 2007 graduate of Ephrata High School, gave 60 percent of his liver to little brother Parker. After nearly nine days, Jacob is out of the hospital but in an apartment just across the street while Parker deals with some of the common side-affects which develop in the days and weeks after a transplant.
"I’m hanging in there," Parker said. "Today I feel good. The worst (pain) is in the mornings. Afternoons – from like 2:30-10 p.m are great. Then nights you can’t sleep. I get maybe four hours a night."
It was a little more than a year ago that The Review featured the story of Parker, then a junior at Ephrata, and his friends bringing prom to him while receiving treatments at Hopkins after being diagnosed in the spring of 2012 with Primary Sclerosing Cholangitis. With Parker needing a liver transplant, Jacob was tested this spring and determined to be a good match.
Jacob, a Penn State University grad who won’t be returning to his finance job at Black Rock until Sept. 1, was asked about the decision-making process and going from robust healthy guy to hospital gown for his brother.
"I’m still a perfectly healthy guy," Jacob said, laughing. "I just walk like an old man and get winded going up steps for now. There wasn’t really much of a decision, it was more of if and when I would be able to donate."
But how did the parents feel watching their very healthy older son do this loving gesture for their ailing younger son who needed this procedure?
"Jake said, ‘there really isn’t a decision here. How could I not have done this?’" Jack said. "How can you argue with that? The two of them got together and talked about it themselves. They worked through the hold-it- over- your- head thing. The timing was perfect in terms of jobs and school. Jake did a lot of research. They went into it with eyes open. We were just along for the ride."
Jacob said things went very smoothly on his end with the procedure that he said will eventually see both of their livers regenerate to 100 percent.
"Procedure was great. I was out cold. The surgical team is awesome so I was very comfortable with them opening me up," Jacob said. "Every day I feel a bit better. I have no idea when I’ll be 100 percent. Little things like nerves regrowing can lead to stomach numbness for six months. But I can’t lift anything over 10 pounds for two months so judging by that I’ll be sub par for awhile probably."
While Parker says he doesn’t really recall the first day or so after surgery, his mother and father, Stephanie and Jack, were right there snapping photos of the progress and posting on social media starting later on surgery day July 1 through Tuesday.
"Parker has received the liver and they have begun to reattach it," was posted during the day July 1 on the "Pound It Park" Facebook page. "The major portal vein has been attached and the micro surgeons are attaching the hepatic artery and the new bile duct. He will be in for another two hours or so.
"So far so good."
More posts throughout the first day read:
"Scared as (expletive) but confident in the team."
"Jake is now recovering in ICU. He was a stud, as one would expect."
"Parker is being finished up right now. Everything appears to be going well at this point. Both teams are well pleased and very positive."
"Mom and dad are just about spent but happy. Let the whining begin."
On day two, the Harleys got a great photo of Jacob reacting to Parker coming into his room for the first time.
Flash forward to the present and Jacob being asked what he was feeling at that moment.
"That was easily the happiest I’d ever been and at that moment there was nothing going through my head except him," Jacob said. "When your body is beat up like that you really have limited bandwidth for thought or outside emotion. I wouldn’t have smiled for a million dollar check at that moment. I was in horrible spirits completely out of control. He was the only thing that mattered. "
Another "Pound It Park" post that day:
"Parker has said that pain is fear leaving the body. The boys are soooo strong."
By Wednesday, videos of the brothers embracing as the pass each other in the hallway leaning against their IV poles draws lots of attention on the site with the comment:
"Words can’t define brotherly love. These are my heroes."
And yet more entries that day stated:
"Entering day two of post op and both Jake and Parker are doing extremely well. All the lab numbers are trending in the right direction, especially the one that show the livers are building more liver. That is really good."
"Thank you all for your continued thoughts and prayers."
"At end of Day 3, both Jacob and Parker are out of ICU and on a regular floor. They have been walking and are unplugged from most of the hardware."
"They are, as expected, in excruciating pain. But it is pain with purpose. The healing has started. Tests show both livers are building new cells and enzymes indicate improving liver function."
"More tomorrow. Our hope is that this becomes really boring very soon."
As the Harleys celebrated our nation’s birthday from the 9th Floor of the Comprehensive Transplant Unit at Hopkins, more updates were posted on the Pound It Park page:
"Some ups and downs today. Tubes came out. Tubes went in. But on the whole day 3 post op is about done and things look pretty good."
"We have an awesome view for tonight’s fireworks. It will be weird to be so far away from them but it should be beautiful."
"So have fun tonight. Be safe. Tell your children you are proud of them and that you love them. Thank you for your thoughts and prayers. Keep them coming."
Then just like that, the weekend was upon them and it was TGIF!
"Another day in Paradise. The boys are maintaining. They are starting to get bored which is very good. Both are right where they ought to be, even if they think they should be farther along. It’s good right now.
By Saturday, with photos going up of the boys and their scars, the following status update was posted:
"We look forward to the day when Parker and Jakes’ children ask the question, ‘daddy how did you get that scar?’"
And so the wonderful story of two brothers will begin.
By Sunday, talk began of Jake being discharged the next day (staying at an apartment the Harleys rented across from Hopkins), and of some struggles Parker was experiencing.
"Parker is having some setbacks that are pretty typical at this stage. He has a small bile leak that may need tending to and some other adjustments that are fairly routine for a young otherwise healthy transplant recipient. The docs are on it and are confident they can straighten things out."
"Keep your thoughts and prayers coming. Neither God nor we are tired of hearing from you."
"Late night update…we spoke to one of the surgical team after a very long day. Parker is going through some pretty typical Day 7 stuff. He had a pretty bad day but the scan shows the drains are right where they need to be and they feel very confident that ‘the tincture of time’ will bring the numbers in line. More tomorrow."
Then on Monday, brother number one leaves the hospital.
"Jacob is feeling better and looking forward to going to the apartment. One down one to go."
"Jake is out."
"Just an update on Parker. Just one week out of surgery, a variety of complications can occur. So we are really taking it moment by moment. Liver counts are trending in the right direction. At this moment, he is complaining about how bad the hospital food is…always a good sign. Parker continues to be positive and keeps a sense of humor. All your thoughts, prayers support here and at home is tremendous. Thank you!
Then on Tuesday the most recent status updates from Hopkins.
"So Jake is out and doing well. He is down to OTC pain medicine."
"Parker is having a tougher time. There is still a small bile leak coming from somewhere, but it seems to be resolving itself at a slower pace than we would like. He is in a great deal of pain and not sleeping or eating well. The doctors are taking a ‘wait and see’ position because the numbers are improving. They don’t want to intervene unless it is medically necessary and right now it is not. So we wait and see."
But by the time Parker got on the phone later Tuesday evening he was feeling better and quite spirited.
"Just taking it day by day," Parker said, when asked about what his prospects were for getting out and his overall goals. "My goal is to make it to the first day of college Aug. 26.
"It will happen!" he exclaims, stating that he will be there at Penn State Berks campus that day. He also said he has another goal of getting out of the hospital sometime next week.
"That was his goal going in," Jack said. "I think he can make it happen but it isn’t going to be easy when he gets there. The rock climbing gym credits won’t happen. We’ll save that for later."
In the meantime, Parker said he is really allowed to eat whatever he wants,
"It’s an open diet but there are some things I can’t handle," he said. "I get nauseous quickly and it’s not a lot of fun getting nauseous in the hospital."
On Tuesday he said he had pudding, bananas, mac and cheese and several Gatorades.
Most of all, Parker said he wants to make sure everyone knows how grateful he is for all the support.
"Thanks for the support – I see all the messages from everyone and everything that has been done. It’s been awesome (the way) people have looked out for me. I really appreciate that."
So, how are the parents feeling nine days later?
"(We are) immensely proud of both of them," they said in an e-mail Wednesday morning. "Angry that Parker just can’t catch a break. Nothing has been easy for him in all this but glad he is coming out of this brief downturn."
Jack and Stephanie also wanted to emphasize how much they appreciate the tremendous response from the community.
"We are immensely grateful for the prayers and support we have received," they said. "Organ donation, especially living donation, is the greatest possible gift anyone can give. Make-A-Wish is a wonderful program filled with thoughtful people who sincerely care about kids."
More HARLEY, page A15