A Mother’s Heartache
This week I am talking to Kelley Howard, Founder, Strategist at DigiVidBIO.com and extraordinary mother to Rachel Rigali who was featured on an earlier show (podcast and the associated blog post) with me and has now sadly died from her cancer.
While both Kelley and I are working in healthcare as she describes navigating the system is difficult even for insiders. Kelley tells the story of her brave young daughter Rachel and her battle with Ewing sarcoma, which alone would be a lot. But with our current healthcare system this because a huge battle to find treatment and coverage, all made especially difficult because Rachel’s cancer was rare. Although it was rare the constant delays and dismissals within the healthcare system, despite being in severe pain were widely felt by anyone who has to deal with the US healthcare system. In Rachel’s case, her ordeal involved navigating insurance and seeking charity care to access treatment at the Mayo Clinic. As Kelley shares, Rachel’s journey highlighted the critical importance of timely and personalized care in the face of an aggressive and rare cancer, all made much harder by an unforgiving system that places barriers to care every step of the way
Beyond the Diagnosis, A Mother’s Desperate Quest to Defeat Cancer’s Cruel Grip
Rachel’s battle with Ewing sarcoma revealed the complex and often daunting challenges that patients and families face when dealing with a rare and aggressive disease. Despite having insurance, accessing specialized care proved arduous and despite the urgency of her situation and Kelley’s fierce advocacy for her daughter, the logistical challenges were all-consuming.
Invisible Battles, Unseen Tears
Kelley highlights that throughout this experience and the administrative challenges faced the care was exemplified by the remarkable dedication of clinicians and the unwavering determination to help Rachel despite the seemingly insurmountable odds.
We discuss some key incremental learning points and the things you need to do now including
- The challenges faced by patients with rare cancers,
- The importance of personal advocacy and research – arming yourself with as much information as you can,
- Enlist the support of friends, family, and patient advocates and support networks filled with people wanting to help
- The necessity of open and honest communication with healthcare providers and support networks
- Have open and honest communications so that everyone understands possible outcomes and urgency
Throughout the conversation, the urgent need for reform within the healthcare system is evident, and the tragic story of Rachel’s battle with cancer serves as a sobering reminder that the intricacies of healthcare can impact anyone, and the effort to improve healthcare should be everyone’s collective responsibility.
Meanwhile please listen in to hear both of us choked by the experience and eventual outcome and as I have said elsewhere it continues to remain my constant refrain:
Keep trying to solve the business of healthcare, as if your life depended on it, as one day soon it will
Listen live at 4:00 AM, 12:00 Noon, or 8:00 PM ET, Monday through Friday for the next week at HealthcareNOW Radio. After that, you can listen on demand (See podcast information below.) Join the conversation on Twitter at #TheIncrementalist.
Listen along on HealthcareNowRadio or on SoundCloud
Raw Transcript
Nick van Terheyden
And today I’m delighted to be joined by Kelly Howard. She is the founder and strategist at Digi vid bio. And she’s also Rachel regale his mother. Kelly, thanks for joining me today.
Kelley Howard
Great to be here. Thank you.
Nick van Terheyden
So we’re gonna get into this discussion pretty quickly. But I always like people to share a little bit of their background because context makes the world of a difference. Tell us a little bit about you and how you arrived at this point in your career and your sort of intersection. You know, in healthcare professionally.
Kelley Howard
Absolutely. So, eight years ago, I started my own digital marketing agency. We are focused on the biotech life sciences and med tech area. clients include the Terra Illumina and companies like that. And interestingly enough, well, I’ll just say that those are some of the clients.
Nick van Terheyden
So you’re you’re deeply invested in the healthcare space, you understand healthcare, probably better than the average person because you’re involved in it. But in this particular instance, we’re talking about something that’s very personal. And you know, first of all, thank you for sharing it, if you would tell us about Rachel and her journey. Yeah, absolutely.
Kelley Howard
So Rachel was diagnosed in October of 2021, with a rare form of cancer, Ewing sarcoma, just to help everybody understand how rare that is, it is they diagnosed 200 A tutor and 50 cases a year, she was having back issues and kept trying physical therapy and medications and couldn’t find any relief, finally had a scan, and they found a baseball sized tumor on her spine at the time. And when she was diagnosed in October of 2021. They typically many times don’t stage cancers. But if they would have stage that it was a stage, probably stage three, because of the size it was localized. But it was a very large tumor in a very scary place.
Nick van Terheyden
So for anybody listening to this, we will put a link in the notes around this, linking back to the episode where I interviewed Rachel and she shared what is way more detailed story of her experience. And to be clear, you almost gloss over it. But Rachel’s experience was nothing short of a living hell of pain, and constant dismissal through a healthcare system that said her just back pain, it’s a strain, it’s this. And the reality was she had very serious issues ongoing, that when she finally pushed and got scanned, was discovered to be a tumor that has, you know, some very challenging outcomes and more importantly very difficult to treat. She then goes through this process to attempt to get treatment with your help. And she describes this without you this would have been impossible. It was a mammoth climb of fighting systems fighting, lack of insurance, lack of coverage, ultimately, you got coverage through charity care. Tell us a little bit about that piece of the journey.
Kelley Howard
Yeah, so it took us about two months. Oddly, probably three months before Rachel was diagnosed. I pleaded with her to go on to the marketplace and get insurance, which she did. And you would have thought, okay, she’s got insurance, we will be fine. But the fact that this was such a rare cancer, she needed to be treated by people who understood this. Because it’s a rare cancer. There wasn’t a lot of standard treatments out there. Not a lot of research in this area, as you can imagine. So we we bought with insurance a little bit and then we knew that Mayo was the place where they had the top sarcoma expert or a very good top, a very good sarcoma expert. So we applied and it took us probably two months to two to three months to finally get everything okay, we had already gotten into the system by going in through the ER when she was having very bad pain. So we were able to kind of get in the system but insurance wouldn’t pay for it. So it took us two months to fill out paperwork and kept checking and check in finally we were able to get able to get 100% charity care which we were thrilled and at the time they told us it would be even after if What if we got rid of the cancer it would even come to and you’re on with scans and things like that that didn’t end up being the truth. But, but that’s kind of what it took to be able to get into the system. And I will tell you, Mayo was a wonderful place. I have had the pleasure of working with a lot of hospital systems. And by far they were so cohesive, there was a multi multidisciplinary team that did just amazing things. And so the care there was really, really good.
Nick van Terheyden
So I just want to make sure we clarify you talked about two months of, is it a total of four months before she starts getting treatment? Or Yeah, exactly two months, three months, but but even so we’re talking about an aggressive, rare cancer, it’s been diagnosed, and you essentially spun your wheels for eight weeks of nothing going on clinically, to resolve a problem of insurance and trying to get treatment, let’s just, you know, pause for a second and say, how horrific is that for any parent, any person or individual. And if you believe that this can’t happen to you, it can. And, you know, it may not be you, but it will be somebody close to you or a friend. We see it all the time. So now you’re in you get charitable care, thank goodness for mayo, they have something and you know, again, you can refer back to the story. And listen, Rachel got treated and things I would say for the most part, when certainly better, I’m not going to say well, because I think it was still quite the journey with the treatments that she endured. But she reaches the end of that what happens now.
Kelley Howard
So after intensive chemotherapy for a year and proton beam radiation, they said that the tumor was no longer there, but there was still scar tissue and things from from the radiation and everything. So they in October, they basically say, Okay, you’re good to go. Just go find a medical oncologist get a scan in a month. When we were there. You’re so excited that this is over. I knew working and you know, being around the oncology area, I knew it wasn’t in remission. I knew that we had some time to go, but they basically I was the doctor was literally telling this and I’m just I’m so excited. We’re just want to get out of there. And they really just said go out, find a Medoc. Get a scan. And I think Rachel heard of a month I heard a couple of months I really didn’t think we I wasn’t I wasn’t even paying attention. You’re so excited that I literally thought oh, great. Well, Rachel then tries to find a Medoc and she’s not giving it the priority. She should. And I was thinking okay, we’re good. Now we just need to monitor scans. We should be good. She ended up getting a scan in January. So she was released like towards the end of October. She ended up getting a scan in January. And it showed up with a small reoccurrence. And interestingly enough, one of our one of my clients Natera when we saw the reoccurrence, we started with an an oncologist who was actually radiation oncologist who had to do a blood biopsy. I remember we it was January, we’re in our office, we did a blood biopsy from the Tara. And just because she believed in this, interestingly enough, the doc at Mayo really didn’t believe in the blood biopsies. And this blood biopsy is to check for reoccurrence. These, these blood biopsies when you use it in this way, basically can detect tumors or free floating cancer cells almost six to eight months before it’ll show up on a scan. So I love this. I’m a big proponent of it. So we started to use that in this is how even I wasn’t taking it serious. I knew we saw it was a local reoccurrence. And my thought was, okay, so local reoccurrence, we’ve caught it early. So then we’re trying to get we’re trying to get what our radiation oncologist was telling us is that we need to get back into Mayo because they have proton beam. Nobody else in Arizona has it. So we are trying to get back into mayo, we go back to Mayo, and we’re trying to get back in and they’re telling us believe it or not, you’ve got to you’ve got to do the whole the whole thing again, we’re going to have to have you fill out work for charity. And we’re going to try to push this through even though they had all the history there. I mean, it was had been less than three months, four months for God’s sakes. So they had the history, but they wanted us to go through that whole process again, of applying for charity care, which we did. And we’re waiting and we’re waiting and I’m calling and I’m calling them, and then it becomes apparent that you know, maybe we need to look at something else. I mean, the radiation oncologist at the time was saying she needs proton beam, that’s what she needs. So we then so I then start fighting the insurance company to see if we could get an appeal and see if we could go directly and have them funded. And that took months from the time she had reoccurrence to the time, it was not months, it took probably another four or five weeks. Meanwhile, this is a very aggressive recurrent cancer. And I keep going and jumping through hoops and having to take her back to a PCP and keep keep in mind that her back was really starting to hurt again, that was a lot of pain. We kept spinning our wheels trying to get an insurance appeal that got turned down trying to get, you know, back into Mayo that they hadn’t given us a, an answer. So we ended up on February 14, getting your end because we had a surgeon that said he could go in there and take off, wouldn’t be able to get margins, but he was able to go in and do a little reconstruction around her spine, which needed it and also get some get as much cancer out as he could. So we did that on February 14, it was horrible, was very painful. But then we thought, okay, maybe this buys us some time to hear back from another appeal with insurance and with male. So we went in and did that. And he said it would be about five, four to five weeks, that she should start feeling better because he went in and was able to reconstruct and do some caging around a vertebrae and to get cancer. Well, she comes home to our house and is convalescing. And she was in a walker Well, three and four weeks, it’s not getting better, it starts to get worse and four weeks into it. And of course we didn’t we didn’t try to get her into chemotherapy because he said you shouldn’t do that you shouldn’t do chemotherapy right now she’s still healing. Well come to find out for five weeks, and now she’s really starting to hurt and it’s not getting any better. And now she’s going into a wheelchair. So now she’s in a wheelchair. We’re still trying to get appeals restrike I’m still now I’m like pushing even harder to try to get appeal. I’m calling bail once a week trying to find out if they’ve gotten a if they’ve heard anything back. Meanwhile, the radiation oncologist that we’re working with, is beside herself, like I am calling. I’m texting where she is she is calling me all the time. Have you heard anything, you could tell the fear in her voice, which is scaring me. So we do a Natera another Natera blood biopsy, probably about five weeks after her surgery. And her CT DNA markers are off the scale. And she calls me and says you know, this could be because of the surgery. Sometimes when you do surgery or you do chemotherapy it can it can make the CT DNA elevate because it pisses off kind of the the cells. So I’m hoping that that’s the case. Well, it wasn’t. Then we go and we go and get another scan and it shows it had metastasized. It had literally spread to her pelvic area, just multiple places in the body. And now it’s I mean, we the time and I’m still I’m still naive and I’m still thinking, all right, we’ll look at clinical trials. Okay, so then we start looking at clinical trials. Oh, and by the way, when we got that scan back, it was like, Okay, we got to get her in. We’ve got to do some things to stomach like, chemotherapy or something. We’ve got to get back on top of this, because it’s obviously now spread. We’re losing time. So we ended up taking her to Banner MD Anderson found out that her insurance would was taken there. And I was hoping that the tie with MD Anderson being a top oncology provider, maybe there was, you know, that type of expertise there at the banner location vendor, MD Anderson here, took her out, got her in at one of their hospitals and they did chemotherapy, it, it helped for a couple of weeks. But then these, then we started seeing tumors that start showing up on her head on her skull. So all of a sudden she’s starting to get these lumps. And we then after she waited four weeks, we went back and did another cycle. And the tumors on her head started to shrink a little bit, but it would only shrink for a short time and she’s still in a wheelchair at this time. So it just it was truly like wildfire. I was able to reach out to another sarcoma specialist who actually was out of Santa Monica. And this is where we’re, her fiance and myself are literally combing for clinical trials. We’re talking to different people. So we’re like this is and I literally stopped working. I took a leave of absence because I just had to put everything into this. So we’re looking at clinical trials. Well, we found a clinical trial we thought would be really good. But now it’s too little too late and she wasn’t healthy enough to get into the clinical trial. And now we’re in that ferocious, ferocious cycle. So we found, as I mentioned, we found a doctor who actually had pioneered some of the standard treatments for sarcoma and Ewing sarcoma. He was calling us at night. I mean, the care from a lot of these providers was just unbelievable that They wouldn’t be calling us after they left work. And you know, we’re, they’re calling us on our cell phones and vice versa. That was incredible. But at that point, it was too late, even though we didn’t think so like, and I, you know, kept telling Rachel, if it gets to be too much, you let me know. But she she would did not want to give up. We didn’t want to give up. And we felt like we had a chance. We really thought that, that we could win this, but we just could not. We didn’t. We had another clinical trial. We had booked airline tickets. We were leaving that morning. And now because she’s on a lot of pain medication, she was on methadone and it there was so much pain medication, quite frankly, we couldn’t keep her hydrated, like she was drinking huge things of water and we could not keep her hydrated. So she started to become dehydrated, she started to become anemic. So we literally were getting ready. We were packed. Danny was going to come over we were going to take her to the and she’s in a wheelchair and we were going to get her on a plane and get her over where we were trying to get her into this last clinical trial that included immunotherapy that looks so promising. We literally that morning had to rush her into Banner MD Anderson, because she was so she was so listless and, and she just was out of it. So we took her in. And that’s when they checked her in and she was there for two weeks. We were still I’m still desperate because I know that now we’re just things are not looking good. This was the last two weeks and so sorry.
Nick van Terheyden
Well, let me just interject. I cannot imagine, as a parent, the full time stress and strain of this over on top of everything else that you do as a human being. And I just want to say how sorry, I am.
Kelley Howard
Thank you. Thank you. But I think that’s so important. It’s really important to get out because that last two weeks was horrible because she then had a tumor on her cheek, which started to get really big. And we were trying to get her into at least at that point, we were trying to get radiation or we’ve tried to get chemo but her red like her red platelet cells were too low to get her started on chemo. And we really thought we were so close, but they couldn’t. It just her, you know, your bone marrow gets spent when you’ve had so much chemotherapy. That’s that’s where we were. So but this tumor kept getting bigger. So we thought, okay, let’s do some radiation. That would shrink it. Because now she can’t. She can’t swallow very well. So she’s not a feeding tube. And she also can’t talk really well. We were able to get her some radiation to try to shrink the tumors and treat this tumor. We got her radiation on a Friday. This was coming up on Labor Day weekend, I think, no, I’m sorry, Memorial Day weekend. And so we got some finally got finally and the here’s the other thing, nobody is moving quickly, which is really frustrating. This is what I mean by it’s a rare disease. And I don’t think they understood the urgency. I mean, it took us days to get her in to get just a palliative treatment for the radiation. We did that. So she had it done on Friday that Saturday, her tumors all started shrinking significantly. Absolutely, significantly. Unfortunately, it was a little bit too late. Um, the other thing we did was I have a good friend who’s a cancer researcher. I reached out to him about five days before she passed and said this was what’s going on, you know, what do you suggest and he suggested he’s actually working on a cancer vaccine here in Phoenix. But he suggested it was a de worming medication that actually had some strong anecdotal evidence for treatment. So Danny and I, he went on, we found dosing. There had not been at large clinical trials, but there had been smaller trials. So we got the dosing It was everything that we could give her she was on a feeding tube at this time. So we literally went out, bought everything crunched up, and we started putting it or feeding to two days before actually three days before that it was just too much too late. You know, it was our Hail Mary. But it gave her hope. And she died on. So we started giving it two or three days, and then she died on Sunday. So you know, but damn it at least we tried it right. I wouldn’t do it again. It was too late. But it gave her hope that gave Danny hope. And when she actually passed she actually coded on that Sunday night and he was just kind of the power of positivity and belief. And I think back are you better too. I have that positive till the very end. And I think I think yes, I absolutely think yes.
Nick van Terheyden
So let’s start with a couple of things. First of all, thank you for sharing the story. Thank you for sharing Rachel, and for Rachel even coming and talking about this, because at the time she shared this whole thing. You know, I’m devastated that she died, and that the journey was so awful. But you’re on this, for a couple of reasons. One to share that story. I think it’s important to remember what an outstanding young lady she was. And focus on her memory. And why this is important. And, you know, it’s easy to discount this and say, It’s rare that you know, you can’t solve all these problems. But I think it’s very clear from the story. Even if it wasn’t solvable fully, could have been far, far better, as you heard. And you said repeatedly, throughout all of this, the care compassion from the clinicians in all of this who wanted to, but were stimulated because of the system. Yep. So we only a limited time. And I think it’s important to try and grab as much as possible. What should people take away from this, that you think could be done better that we can improve? For everybody out there and healthcare?
Kelley Howard
Yeah, three things. If it’s a rare cancer, you got to know that puts you in a very different disadvantage. Not only do you have lack of research, because obviously, resources go to the more prevalent diseases, which makes sense. But you have to understand I did not understand at what a disadvantage we were because her care team didn’t understand it, because we couldn’t get her back to Mayo. They understood it. But quite frankly, even they made missteps, too. He really got to get, I started reading many books about how to file appeals and what to do. That was important. It didn’t help me. But But I think our insurance companies are so at a disadvantage. They puts us at a disadvantage of getting the care we need. But you just have to keep fighting. And you have to arm yourself with as much information and there’s some good books and advocates out there to help. And the other thing is, don’t rest. Don’t just don’t. Don’t leave it to the care visit. Don’t leave it to your care team, get out there and do the research. It can be scary. But there are friends, I know I had friends saying you’re going to be doing research, and it’s going to scare you. So if you need me to dig into some of the research, it’s a little scarier, let me know, that probably was a great piece of advice that I didn’t take, because I just was so passionate. And if I would have seen that Rachel’s chance of reoccurrence was more than 30%, I probably would have been more vigilant. But I think that’s another thing is you just can’t you just can’t rest. You just can’t assume that your care team knows it all. They it’s impossible for them to know at all. But you just you’ve got to take some responsibility and get out there and advocate.
Nick van Terheyden
So I’m going to pull out a few things here, I think it’s important to sort of highlight so you know, the rare cancer works against you. And let’s be clear, rare cancers multiplied up by all of the different rare cancers that could be used. So important point number one. getting familiar with the whole process. And you know, one of the things I would say you and I both in this healthcare space, and I have fought the system, I have ostensibly won if there’s such a thing on on occasion, and you know, I’ve actually been very public about it. One of the things I would say for those that don’t understand is find resources and individuals and there are patient advocates and folks and institutions that will work and you know, support. And that brings me to the other thing and you’ve talked about it. There’s people out there you have a network we hopefully you do if you don’t I’m I find one. People care. And you need frank, open and honest conversations. We have to be honest with each other about what’s going to happen, what the potential is, you know, this is a very difficult conversation. We’re not good at this in society in general, and having open and honest conversations and pulling in those resources to allow others to help you extraordinarily valuable This is not something that cannot be solved. There are lots of steps throughout all of this. And I think arming yourself with the information and the understanding, and more importantly than anything else that I want everybody to take away, is, if you think this can’t happen to you just wait, it can. And it will, it may not be you individually, but it will be somebody that you know or care about deeply. And it will be a shocking transformation and it will be too late at that point to navigate this system. So I beg you to keep trying to fix the business of healthcare as if your life depended on it. Because one day soon it will. Unfortunately, we’ve reached time. I have to thank you again for being willing to share what is a very, very difficult story. Kelly, thank you for joining me and sharing your story and matter for Rachel on the show.
Kelley Howard
Thank you and you’re I applaud the work you do because you’re absolutely right if I didn’t think it would happen to me and because I eat, sleep and breathe. I’m even a member of ASCO, for God’s sakes. So quite frankly, it can so but thick. Thank you for the work you’re doing. Dr. Nick. It’s absolutely monumentally important
