Miles powers Redblacks ‘D’ while daughter fights for life

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As Barron Miles keeps himself busy turning the Ottawa Redblacks’ defence into one of the Canadian Football League’s best, much greater concerns are on his mind.

The 52-year-old defensive co-ordinator is thinking about his oldest daughter Raven, 29, who went to college in Los Angeles and has stayed there to pursue an acting career while dealing with lupus nephritis, a disease that inflames her kidneys.

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He’s thinking about his 23-year-old son, Barron Jr., a wide receiver with the Grambling State University Tigers who is finally playing again after four years of dealing with a difficult hip reconstruction.

And there’s his wife Jennifer, a pillar of strength he met when the two were at the University of Nebraska.

The mother of Miles’ three children lives in Chandler, Ariz., and has stage four endometriosis, which has caused scar tissue throughout her abdominal cavity that has led to some “scary moments” of internal bleeding as well as a painful bladder condition called interstitial cystitis (IC).

Jennifer, who has had multiple surgeries and needs treatment three times a week, had to quit her job not because of her health issues, but to become a full-time caregiver for Ava, the Miles’ 21-year-old daughter.

It’s Ava who most occupies Barron’s thoughts now.

With Jennifer by her side, Ava was flown via air ambulance from Chandler to the Cleveland Clinic in Ohio on Thursday, the same day Barron was with the Redblacks as they extended their unbeaten streak to five games with a victory in Calgary.

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The next morning she met with surgeons, who scheduled a plan of action on how to attack her gastroparesis, which is a paralysis of the stomach and has reached an extreme degree that includes life-threatening complications.

To do his job, and do it well, through distractions of that magnitude speaks to the character of Barron Miles.

“He has a hard time talking about any of it,” Jennifer said on a call from outside Ava’s hospital room Friday evening. “I think it’s hard enough for him to be up there and away from us when this is going on, but, unfortunately, you’ve got to pay bills, too. One of us has to keep a job.”

The bills, as you can imagine if you know anything about the U.S. health-care system, are astronomical.

The air ambulance alone was $40,000, but Ava was in no shape for any other mode of transportation and the Cleveland Clinic offered hope.

“She started having some issues at 16, where she started to vomit uncontrollably and just could not stop,” Jennifer said when asked to share Ava’s backstory. “We saw many doctors, and it took about three years to get her properly diagnosed. You can have varying degrees of how serious the gastroparesis is and, unfortunately, hers is extremely severe.

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“They did a stomach emptying test to determine what rate your stomach is working at, and hers was completely severe and after five hours she had barely digested anything. So, essentially, what happens is, if she tries to eat, it just sits in her stomach, and then the food becomes rotten, for lack of a better word, and then your body starts to reject it. That’s why she starts to vomit.

“We were told when she was diagnosed with it that there’s like six different steps of surgeries and medications and procedures you can do, and, you know, not to worry, very rarely do they get to the end of those six steps. We got to the end of those last year, and then she’s just continued to go downhill.

“They’ve tried everything from a gastric pacemaker, which works very similar to the pacemaker that they use in the heart, but instead it’s placed in her abdomen, and then the (impulses) go to her stomach and it will contract to try to make it work. She’s had CTP (Computed Tomography Cerebral Perfusion analysis) and fed with a PICC line. She was fed just with calories with a fluid through her IV. We tried that for about a year, and then about six months ago, she really started to do worse. So they put in a J-feeding tube and right now she doesn’t eat any food. She has a port where she gets her hydration for the day and IV medications as well.

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“So the last six months or so, when things started to get worse, she just started to develop life-threatening complication after complication, and she’s had blood infections that turned and she became septic after those, so that was a very scary situation,” Jennifer continued. “She’s had an issue with her electrolytes because she’s gotten so dehydrated, so her potassium, for example, was down to 2.4,  which is a life-threatening level. They had a hard time, even in the hospital, getting that up. And then she’s developed some issues just from malnourishment, so her hair has fallen out, and other troubles due to malnourishment.

“We got to a point where the doctors in Arizona just said, ‘We’ve done everything that we can do for her here, and she’s just going to kind of continue this cycle, and it’s just not healthy for a human to vomit that much.’ It had been months and months that she’ll vomit up to 20 times an hour. So they said, ‘We think we need to get you a higher level of care,’ and that’s at the Cleveland Clinic, where there’s a gastroparesis specialist.”

Jennifer is staying in a hotel attached to the clinic, where she can go to sleep when she’s not at Ava’s side.

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There’s no doubt Barron wishes he could be with his family.

“It’s very tough on him, I think,” Jennifer said. “I’ve had a lot of people make comments to me about how it must be hard to be down here alone with her. And I tell them, honestly, I think it’s worse for Barron because I’m with her, so I get to see every day what’s going on and spend all this time with her.

“I think it’s a lot harder for him to be up there, away from his family. It’s hard anyway, but, during a tough time, it’s very difficult. I think the only thing that really gets us through is, this year, when he was getting ready to go back up for camp, and, you know, it’s hard to leave, he was saying that he felt bad that he had to go up there. I told him that, when you go through a hard time, especially when you’re the one who is sick, you just want things to feel normal again. And, for Ava and I, that the best thing he could do, the way he could help us the most, is to go up to Canada, enjoy being around the players and the coaches and have fun with football again so that we can watch the games and talk to him at the end of the day, and he could be excited about practice. We can watch him win.

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“It’s those kinds of things that give us some normalcy because the kids were born in Montreal when he was playing,” Jennifer added. “So they are CFL kids through and through. For them, that’s normal, right? It’s like it gives them some joy because it takes them back to a better time. So, as much as that might seem silly to some people, for us him being up there, coaching is inspirational to us, and it gives us the essence of normality.”

The Redblacks, of course, are well aware of Ava’s condition and the family’s struggles. Linebacker Adarius Pickett has sent her a message of encouragement through his social-media feed, while others have acknowledged an added level of motivation playing for their beloved defensive co-ordinator and his family.

By playing hard and winning, they are helping the Miles clan in its time of need.

“We’ve watched every single game so far this season, actually, in the hospital, when Ava’s been in her hospital bed,” Jennifer said. “One she just came out of surgery, and the other one, she was a little too sick to watch, but the rest of them she’s watched with me. And it’s exciting to see the entire team do well. Of course, we cheer extra hard for the defence.

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“Everything is a lot easier when you’re winning, but it is fun to watch him, and to get the team on the field and see the players doing well. That’s exciting. Those are the good moments.”

Along with living the absolute nightmare every parent has of watching their child fight for its life, the Miles need help to deal with the avalanche of medical bills.

Jennifer’s sister, Kim Weeks, visited Arizona for a couple of weeks this summer, with Ava in the hospital the entire time, and, after seeing how difficult the financial struggles were, decided they needed help.

So she set up a GoFundMe page.

“She was there when the doctors came in and said that they’ve done everything they can for her here,” Jennifer said. “Just seeing the fear in Barron and I, and our other two kids, and wanting to do everything we can to save Ava. And then, when the insurance decision came down, denying the air ambulance we needed to bring her to Cleveland and the treatment in Cleveland, she decided she was going to start it.

“How it works is people can log on to the website and donate to it, or they can even just share it if they don’t want to donate … even sharing that helps us. All of the funds are transferred to us, and then we can use them for whatever we need for Ava’s medical needs.

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“We had got just enough on Wednesday to pay for the flight out here. We had raised just enough by that day for me to be able to transfer it, wire it over, and pay for that. That was a huge help and the air ambulance crew was absolutely amazing. They control everything and she has some issues with her heart rate. She became tachycardic … they were able to control that, give her her pain meds and nausea meds, and deliver her directly to the hospital.

“Honestly, without the GoFundMe, it would have been very, very difficult to have that happen.”

Along with the steady stream of medical bills, Jennifer, Barron, their friends, and their football family are left to pray for what matters most: a positive prognosis.

“That’s what we’re hoping for right now, it’s why we are doing everything we can and got her to Cleveland, and will continue to do everything we can until she gets the health care that she needs,” Jennifer said, pausing to maintain composure. “When it’s your child, you’ll do anything. I just think the hardest part right now is we are in limbo because we don’t know exactly. She has to go through more testing and see some more specialists here in Cleveland before they’re going to determine exactly what they’re going to do for her. There are a couple of surgeries that are on the back burner. We’re just waiting to see what some of these tests come back. One is a little more invasive that we hope you don’t have to get to, but, at the end of the day, you’ll do whatever you have to.

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“We want her to be healthy, and we really want her to have her quality of life back. At 21 years old, she should be out with her friends and working, or going to school and chasing her dreams. And it’s very hard to see her not being able to get out of bed and not being able to go out and do things that a normal 21-year-old would do.

“We would love to find an underlying condition that they can treat, and this all gets better. We would love for her not to have to be fed through a feeding tube. If we could just see some small improvements to where she could have some quality of life, that would even be an improvement.”

To help the Miles with a donation or just to pass along the information for the GoFundMe page as they fight for Ava’s life, visit https://www.gofundme.com/f/please-help-aid-avas-fight-urgent-medical-transport-needed.

dbrennan@postmedia.com

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