Episode Transcript
[00:00:01] Hi, everyone. This is Dawn Klem, and you are on my podcast, Milkweed and Monarchs.
[00:00:09] I'm going to apologize right up front because I have a little bit of a head cold, so I might even be more nasally than I usually am, but I can still talk. And so I want to go ahead and tell you a wonderful patient story about one of my patients and her husband.
[00:00:31] They are a match set, I would say, and it's a lovely story and it's worth being shared with all of you.
[00:00:42] So here we go.
[00:00:45] I was in clinic, and I had stepped into the hallway where the patient rooms were.
[00:00:52] I heard the medical assistant go out into the waiting room and call the next patient Mary.
[00:01:00] I already knew that Mary had been diagnosed with a grade four glioblastoma. So grade four brain tumor, terminal diagnosis.
[00:01:12] And sometimes I would step into the hallway when the patient got called back just to. To kind of assess the situation and how I thought maybe that first appointment was going to go, because it's a lot of information in that appointment.
[00:01:30] So I saw the medical assistant round the corner, and behind her was Mary, and behind Mary was her husband.
[00:01:39] And at that moment, my heart sunk because her husband was walking with those cuffs, crutches. So the cuff is on the forearm, and then they. The crutches go down to the floor. And it was obvious that he could not walk. He was handicapped.
[00:02:00] So at that moment, I remember it vividly. I looked up to the ceiling and I said, why, God? Why?
[00:02:12] It wasn't the first time I said that in the clinic, but today it seemed to be more relevant.
[00:02:19] I remember thinking in my mind, her husband is handicapped and she has a terminal brain tumor.
[00:02:31] Why does this have to happen, God?
[00:02:37] And with all questions like that, of course, the answer doesn't come quick, does it?
[00:02:46] It's one of those situations where you're going to learn something.
[00:02:52] And that's what happened with Bud and Mary and myself. I actually think they taught me more than I taught them. That's how I feel about them.
[00:03:07] So you can't tell Mary's story without first telling Bud's story.
[00:03:14] So I'm going to start off by telling you about Bud, and then we will get into the story of Mary.
[00:03:25] Bud was a pilot. He became a pilot for Wings of Mercy after reading an article in the newspaper. He loved the idea of helping others with medical needs, using his passion for aviation, and did his first flight on February 28, 1993, for Wings of Mercy.
[00:03:51] So many of you might be wondering, what exactly is Wings of Mercy? And I Want to read you about that organization right now so you understand.
[00:04:10] Wings of Mercy was founded by a Michigan native and pilot named Peter Vandenbosch. At the age of 68, Peter had successfully retired and and was enjoying a fishing trip off the coast of Florida when he heard a voice simply say, Peter, there is more to life than this.
[00:04:34] For two weeks Peter told no one before he finally shared his experience with his wife.
[00:04:42] When she heard, her immediate response was we've got to sell the house in Florida and and moved back to Michigan in faith. They moved back and waited and within a few months a friend suggested that Peter use his twin engine plane to fly low income patients to receive treatment.
[00:05:06] Peter founded the Wings of Mercy in 1991 and since then the Wings of Mercy has flown over 8,000 missions.
[00:05:18] They've grown from just a handful of volunteers to a registered organized nonprofit. And they've seen the formation of two additional chapters, one in Minnesota and one in East Michigan. They can fly anywhere in the US east of the Rocky Mountains and they look forward to continuing to grow their network and services for years to come.
[00:05:49] The organization Wings of Mercy was set up for patients who can't travel commercially. Wings of Mercy is a unique non profit organization providing free air transportation to distant medical centers. As a faith based organization, they seek to honor God by serving and sustaining life for those in need.
[00:06:17] Serious or rare illnesses are not always treatable at local or even regional medical centers.
[00:06:25] Sometimes the best or only treatment can be hundreds of miles away.
[00:06:31] And even when a patient's health insurance will cover the treatment, it rarely covers the cost of transportation to get to those services.
[00:06:41] That's where the Wings of Mercy come in. Connecting people in need with volunteer pilots who can fly them safely to their destination.
[00:06:53] With accountability and stewardship. Wings of Mercy ensures that 100% of all donations go directly towards sustaining the cost of their flights, which most most of which are fuel expenses. You can imagine how much it cost for those planes to get fueled up.
[00:07:17] All of the pilots are volunteers, generously lending their time and oftentimes their planes to the cause of Wings of Mercy. With minimal staff and a low overhead cost, they are able to coordinate flights to meet appointments, pay for aviation fuel and expenses and raise funds to continue the operations. They are entirely funded by a char by charitable contributions.
[00:07:50] What a fantastic organization. And I can tell you from experience that it is a well needed service each even in Michigan, like I live in Grand Rapids. When I was working for that large medical organization and we had patients coming down from the Upper Peninsula or even Northern Michigan, it's quite a journey down. And if you are a low income patient, the cost of getting there is, is a burden. So this is a wonderful, wonderful service. And also what they said in the explanation of their services, it's true. Even though we are a great hospital or we have a great hospital organization here, there's times when you need to go to someone even bigger such as the Mayo Clinic. And so the fact that this is a charitable organization that, that flies the patients for free is a fantastic service. So I have to just give kudos for the Wings of Mercy.
[00:09:06] For Bud, Wings of Mercy connected him to his personal story and experience with his own medical challenges. As a newborn, Bud came down with encephalitis a a brain infection which caused Bud to have a high fever and a coma. This infection attacked the cerebral portion of his brain, resulting in him having cerebral palsy. And that's why Bud uses the cuff crutches, because his lower extremities do not work well, so he doesn't walk normally like we do.
[00:09:51] Despite these challenges, Bud became a commercial pilot, instrument rated and a certified flight instructor. In the 1980s, Bud was one of three people in the country with cerebral palsy with a commercial pilot license and possibly the only flight instructor.
[00:10:13] What a remarkable human. That's all I have to say.
[00:10:19] Beyond these accomplishments, Bud's legacy continues to be his heart of service for those in need.
[00:10:27] After a conversation with Peter Vandenbosch, the owner or the person who originated Wings of Mercy, where Bud went to Peter's house to see if Wings of Mercy could help a friend of his with medical problems who needed transportation assistance, Peter reached out to another pilot, Ray Eaton, a Wings of Mercy pilot who had flown with Bud several times. Ray shared Bud's a great man and a great pilot. Bud can fly with me anytime and if he's willing to help with Wings of Mercy, I believe he would be a very good fit.
[00:11:14] Following that interaction, Peter started recruiting Bud to help him do flight coordination, which ultimately led to Bud becoming the first official flight coordinator for Wings of Mercy in April of 1994. At the time, the this was a volunteer position without modern technology. But bud was coordinating 100 to 150 flights a year using only his telephone. During his free time, Bud built the first list of contacts of airport managers and social workers, establishing a network of support that remains vital to Wings of mercy today.
[00:11:58] In 1998, Good Sam Ministries started to help qualify recipients to get scheduled for flights. And in 1999 Wings of Mercy hired its first full Time coordinator. Bud was influential in each of these transitions and trained Carla for the full time flight coordinator role. Bud remained actively involved, helping with care affairs, doing radio interviews and promoting Wings of Mercy. Bud served as flight coordinator with incredible service, passion and commitment.
[00:12:37] Bud's time as the flight coordinator also brought an unexpected blessing into his life.
[00:12:45] Enter Mary in the early 1995.
[00:12:51] In early 1995, Bud received a call from Mary B. Mary was a single mother and needed to get a flight out to Rochester, Minnesota to be seen at the Mayo Clinic. This flight was completed on February 23, 1995 and was originally expected to be only a two to three day endeavor in the clinic there. However, Mary contacted Bud after being seen to let him know that it was likely going to take longer than just the three days.
[00:13:31] The delays continued many times as Mary was getting a complete work up there and Bud became close during all these calls because he had to keep calling her to find out if she was going to be ready, if and when she was going to be ready to have her flight back.
[00:13:52] Mary appreciated how kind and patient Bud had been with her and commented on one of those calls that she would really like to meet him in person. Someday she wants to meet the person on the other end of the phone who's been so gracious.
[00:14:09] Once it finally, it finally came time for Mary to come home. Buddy. Bud told Mary that if she really wanted to meet him, that the pilot Ray who flew with him, who he flew with, couldn't come the next day, but they could come the day after on March 17. Mary replied, of course I can wait. Bud also asked Mary ahead of the flight if it was okay if he gave her a hug. When they met at the airport, Mary responded by saying, I like hugs. So during the time that she was there, which Bud told me later was probably about three weeks, they probably talked every other day on the phone and they had started to develop a really close friendship. Mary felt like Bud was really concerned and cared for her and it was the first time that Mary had felt like that in a very long time.
[00:15:12] A few days after the flight was Mary's birthday, her flight back to Grand Rapids, and she called Bud. Feeling a little down, Bud asked her if he could take her to lunch for her birthday and she said yes. Bud drove an hour to the area where Mary lived and they enjoyed a three hour lunch together. After lunch, Mary invited Bud to her home to meet her three children who were aged 15, 17 and 20. That night Mary called her sister in Pennsylvania and told her that she had met A really neat guy. Her sister proclaimed, mary, you're in love.
[00:15:59] A month later, Mary asked Bud, how would you like it if I were your wife? Bud was speechless and told me he just said, huh? I think so.
[00:16:13] A couple weeks later, While driving on US 131, Mary said to Bud, how about if we get married? On August 19, just four months after Mary asked Bud to marry her, Mary would later say that hug at the airport in Rochester, Minnesota was all it took for her to fall in love with him.
[00:16:41] Such a sweet story.
[00:16:46] After 25 and a half years together, Mary courageously lost an 18 month battle with grade 4 glioblastoma brain tumor on February 10, 2021.
[00:17:04] So three years ago, Bud was with her, caring for her to the end.
[00:17:14] So it just. There's so many things that I can tell you about them, but one of the first things I want to say is that Mary was diagnosed in, during COVID and at the end of COVID is when she passed on.
[00:17:36] So Covid was such a tumultuous time in health care. I cannot stress that enough. And even though we were in an outpatient clinic, it was still tumultuous.
[00:17:51] We had the neuro oncologist there, but she had already made up her mind that she was taking another job in Mayo Clinic in Florida.
[00:18:02] And so we had started the painful process of referring all of her brain tumor patients to another oncology clinic who was housed in, in our hospital, but was not part of our hospital organization.
[00:18:23] If you know anything about health care, then you know that sometimes that's problematic. I mean, health care is a strange animal anyway and it's changed so much over the course of the last 20 years. It used to be that physicians were completely responsible for their own practice. Well, they're having that responsibility also meant that they were called into the hospital to see patients when they were sick so they could be at home and they get called in. So it really was like a 24 an hour a day job. And the physicians, I mean it was a lot of stress. Plus they ran and managed their own office, so they had all the overhead of their own clinics to manage. So as you can see, they were running on low fuel tanks. It's, it's amazing that we kept that health care system working for so long.
[00:19:29] But enter in the years of now physician practices being owned by health care organizations now there's good and bad about it, just like everything. The good thing is that the physicians are not on call anymore, not very often.
[00:19:50] And it's because the hospitals hire hospitalist physicians to manage all the inpatients that come in.
[00:20:00] The same is true for brain tumor patients. Okay, so they would, man, they don't do the surgery, but they manage any other hospitalization that may happen after the surgery.
[00:20:19] So there's that.
[00:20:23] And then a lot of times the oncology group was this, this private practice within our hospital organization. So they didn't even start out really as part of our hospital organization. They were always private practice. And there were challenges with that. I'm not going to lie. There really were. So we didn't. Our organization did not necessarily have our own group of oncologists. So here we are in the middle of COVID Our neuro oncologist has decided that she's going to move. I've got six months to do all the referrals of my patients that we've been seeing over to this private practice.
[00:21:11] I sent all the referrals, I got all the appointments set up. But it wasn't going to be the same. It really wasn't going to be the same. It didn't matter who the doctor was over there. It wasn't going to be our neuro oncologist.
[00:21:27] So most of the patients that saw our neuro oncologist absolutely loved her.
[00:21:35] And going to somebody else was going to be a challenge.
[00:21:41] So Bud was one of the first people that started speaking out because he did not feel like Mary was getting the kind of care that she deserved, number one, and number two, that she had been getting when she was seeing our neuro oncologist. I spent a lot of time on the phone talking to Bud about it, trying to understand what was going on. But he kept emailing me every day. He was not the only spouse emailing me. I had many emails from patients and their family members. The other thing that you have to understand is that that other oncology group already had so many of their own patients.
[00:22:35] So to pick up additional patience was a burden on their own practice.
[00:22:41] So you can see it, nobody was in a win win situation here. I don't want to blame them at all. I do not want to blame them. I'm grateful that they took the patience that they did for us. There was no other choice. And this was going to be better than them not having anybody to see. But they're not going to be treated the same way because those were the only patients that we had. And like I said, they have their own population already that they're seeing and now we're burdening them with more patients.
[00:23:20] So I kept getting those emails and I knew patients were dissatisfied and there were a couple things that were going on that I wasn't exactly happy about either. So I just started sending the emails up the leadership chain of command because I didn't know what else to do. Just wanted you to know this is what's going on kind of thing.
[00:23:44] Well, in the end, two things came out of it.
[00:23:47] One, we, we ended up creating what we called a huddle. So on Monday, every other Monday, I would go over to the oncologist's office and I directly with the nurse practitioner and the nurse in that clinic and I would have a list of all of our patients that they were seeing and I would go over everything that was going on from my point of view. They could ask me questions about anything. It was the first navigator huddle that had really ever happened there. So that was a big step because communication is key in making sure that the patient's needs are being met.
[00:24:39] And then the second thing that came out of it is that the big healthcare organization decided that it was time to start hiring their own oncologists. And I think that is true too. It's going to take time for them to get established and get people to come there, of course, because we do have this other group that's been. Been well entrenched in the community and in Michigan for quite a long time. But it's not a bad thing. A little competition is good for the soul.
[00:25:14] So I tell you this only because Bud, her husband, was instrumental in making sure that change happened in a positive way so that the patients were going to get the care they needed. Just like he was instrumental in making sure that Wings of Mercy was coordinated.
[00:25:41] He is a remarkable person and Mary was a remarkable person.
[00:25:47] And it's really sad that she died after 18 months of having the treatment and that she died at the end of COVID when things were not really as good as they could have been.
[00:26:04] Covid just took all of us by surprise. And sometimes things happen like that and we wish it wouldn't have happened like that, but there's sometimes things are out of our hands.
[00:26:19] So there's no doubt in my mind that Mary went straight to heaven.
[00:26:26] And Bud is someone I still talk with today.
[00:26:32] Lucky for me.
[00:26:39] I hope you enjoyed my story today.
[00:26:42] A lot of twists and turns in there.
[00:26:47] If you have a story that you would like to share with me, please don't hesitate to contact me. You can go on my website, milkmon.com m I l k m o n.com there should be a section at the bottom where you can send me a question or send me a topic that you'd like to talk to me about, or you can call me directly. I have no problem with that. My phone number is 616-843-1392.
[00:27:18] I'm going to continue to tell stories. I think it's a good way for us to understand each other. And we do better as a group than we do when we're separated. And to me, that was really evidenced by my team huddle with the other oncology group. It made a big difference for everyone.
[00:27:46] Until the next time.
