Summary
In this emotionally powerful episode of the Care Lab podcast, Amber Olsen shares her personal journey of navigating her daughter Willow's diagnosis with multiple sulfatase deficiency (MSD), a fatal, ultra-rare genetic disease. Through heartbreak, Amber founded the United MSD Foundation and helped drive the development of the first clinical trial for MSD. The conversation explores her experiences as a full-time caregiver, the challenges of rare disease research, the emotional toll on families, and the importance of self-care and support systems. The episode also highlights the documentary Zebra and the Bear, which chronicles Amber’s journey.
Key Questions Answered
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What motivated Amber Olsen to create the United MSD Foundation?
After her daughter Willow was diagnosed with MSD and she discovered there was no treatment, Amber realized the barrier wasn’t scientific knowledge but funding. Driven by hope and urgency, she launched the foundation to fund research and push toward a clinical trial. -
How did caregiving affect Amber's life and family?
Amber dedicated herself fully to caregiving and advocacy, often at the expense of her own well-being and family balance. She describes it as a 24/7 job, especially in the later stages of Willow’s illness when care needs became all-consuming. -
What progress has been made in MSD research through the foundation?
The foundation succeeded in funding pre-clinical research and securing a government-private partnership grant. Promising results in mouse models led to the manufacturing of gene therapy and plans for a clinical trial in late 2024 or early 2025. -
How can families dealing with terminal illness build a support system?
Amber encourages actively seeking community—through churches, caregiver groups, or social outreach. She stresses the importance of not isolating oneself and being intentional about building a “village” for emotional and practical support. -
What role does self-care and reflection play in caregiving and grief?
Amber emphasizes therapy, journaling, and mindfulness practices as essential tools. She discusses the importance of stepping back to evaluate care decisions and advocates for earlier, open conversations about suffering, end-of-life care, and peace.
Transcript
Brandy Archie, OTD, OTR/L
Alright Care Lab listeners, what if you knew that your child had a terminal diagnosis and no one was working on a cure? Today's guest didn't just face that reality, she built a roadmap, a roadmap to hope. And Amber Olson turned her grief into action, founding a foundation that helped launch the first ever clinical trials for a fatal, ultra rare disease. And today she's opening up with us about the burnout, the anticipatory grief and impossible choices that caregivers face along
Emilia Bourland
We are so excited to have Amber here today. I'm gonna tell you a little bit more about her before we get started. Amber Olson is the mother to three daughters. In 2016, her youngest daughter Willow was diagnosed with multiple sulfatase deficiency, MSD, which is an ultra rare fatal genetic condition. Since the diagnosis, Amber formed the United MSD Foundation, which is a 501C3, forming and leading an organization that has pushed and funded
multiple pre-clinical treatment projects, clinical trial readiness support, and ultimately has paved the way for the first ever clinical trials to treat children with MSD. Amber spent seven years as chief fundraising officer for the organization, and she cannot wait until every child with MSD has an opportunity to live a healthy life without limitations. Amber resides in the beautiful and giving community of Ocean Springs, Mississippi. She has an amazing husband, Robert Cook, and her three daughters, Kylie is 21, Jenna is 18.
and Willow is an angel at 11. Amber, thank you so much for joining us here today on the Care Lab Podcast.
Amber Olsen
Thank you so much for having me.
Emilia Bourland
Okay, so I think, you know, the question that is probably on a lot of people's minds, and I'm really interested in hearing your answer to this is, obviously, this is every parent's worst nightmare to get this kind of diagnosis. Brandy and I are both mothers. Yep. And it's, it's everyone's worst nightmare. And it would be really
Amber Olsen
Mm-hmm.
Brandy Archie, OTD, OTR/L
parents.
Amber Olsen
Yeah.
Emilia Bourland
easy to just sink into grief and, you know, become really insular in this process. You went completely the opposite and you decided, no, I'm going to take this and I'm going to turn this into something meaningful and we're not going to take the sitting down. We're going to find a cure for this thing. And you are very, very close to doing that. How did you
Amber Olsen
I don't think it was like a conscious decision. think it was more of like, cannot, I could not. So when she was diagnosed, know, so MSD is basically a form of, I felt like Alzheimer's or dementia in a child. So when she turned two,
Emilia Bourland
How did you decide to do one versus the other here?
Brandy Archie, OTD, OTR/L
Hmm.
Amber Olsen
she started to regress and then explained to me with the diagnosis that she's going to continue to regress and then she will die, you know, between at the time it was five, but now it's gone to the average age of 11 or 13, 13, think now. But it was going to be a painful process. Like it was going to be this regressive kind of long process. And I was like this, like you couldn't pick a worse thing to happen to a child. Like, like I'm like,
this is the way we should torture prisoners. Like, I mean, like it's just so awful. And my mom has, she has stage four cancer. She's in remission, she's doing good, but she had been diagnosed the year before, went through chemo, did the surgery, did all this stuff and you know, it was treatable. And so she was going to be okay because there was a treatment. So my naive mind, I was like, okay, well there's a treatment. Like we take her to St. Jude, we take her somewhere.
And I discovered that that's not true because rare diseases do not usually have treatments. And then on the other hand, I had kind of walked into this community of amazing parents and there was an amazing dad, Alan Finglas is in Ireland and his son Dylan actually just passed away, but he had already created a foundation. And so I got on Skype with him and he's like, look, they know what the gene is. And he's a carpenter, like not a scientist.
but he is most well-versed person on MSD. And he said, we just need to raise money to fund research and then we can have this gene therapy or some other form of treatment. So I was like, well, is it money or science? And I spent that first year trying to figure out like, is it possible? Cause like, you know, am I like just a mom and I'm hopeful and you know, I'm being kind of led down this direction. And once I learned it was possible, then I was like, it's just money.
And like, can't let money stand in the way of, you know, helping these children not be tortured is basically the way I looked at it. So then it just really wasn't a choice after that. It's kind of once I had the knowledge, then I had to pursue it. you know, cause I couldn't come home to her every day and like look at her as she, her whole body was progressing and, not try, not try.
Brandy Archie, OTD, OTR/L
So all of that trying takes a lot of effort, even if it weren't for your daughter. Like even if this was like, let's say your job or something like that, right? That effort to do a new thing is really hard, right? So tell us a little bit about like how you handled dealing with that, but also like the stakes of that and then like life and also caring for her, right? Cause like being able to care for her is a different thing than the fight for.
Amber Olsen
Mm-hmm.
Brandy Archie, OTD, OTR/L
getting a cure for the disease. know the two of those go hand in hand, but they're like two separate like things that are happening. So tell us a little bit about how you try to deal with that.
Amber Olsen
They are two separate things. Yes. Yeah.
Yeah, not great. You know, I just kind of put all in on the foundation and you know, I coped with that and I, you know, I two other children too and a husband at the time. And I just was like all in. I was like, you know, this is what we're doing and they supported, you know, I mean, my kids have a choice, but.
they were, everybody's hopeful that this is going to help their sister, you know, or help Willow. And so I think like everybody just kind of looked at it, like we just have to get this done. But I will say the caregiving part, and this is really what the documentary is about zebra and the bear. the caregiving part is as you, mean, you have a podcast on it. I mean, like that's a full-time job that that's, more than a full-time job. It's a 24 hour day job. And, she got to the point where she was total care and.
you know, it makes me angry that parents have to do that kind of caregiving and create foundations and do this. But there was no other choice. So it's basically drug development is not going to be done for these small rare diseases unless a parent steps up or the patient themselves. So it's just the way of the system. So it's very unfair. But, and I'm still angry. It's just, it's unfair. It's unfair. It's too much to ask somebody to do.
Brandy Archie, OTD, OTR/L
Yeah, yeah.
Emilia Bourland
Yeah. Yeah, I don't even, I like, I don't understand the logistics of how that would even be done. Honestly, to your point, when Willow was diagnosed, she was quite young. There was never a time for you when you weren't a full-time caregiver to her. whereas, for healthy children, we go from stages of, of needing full-time care to needing less and less care, and then they're independent.
willow actually became more and more dependent on you for everything. then, you know, really towards the end of life, if things are getting much more complicated, you're also providing some sort of level of like medical care too, because there's complex things that have to be dealt with in terms of like feeding and respiratory, I was gonna say, like for folks, if they go and watch the documentary, which they really...
Amber Olsen
Yes.
Emilia Bourland
really should, you should absolutely please go watch zebra in the bear. was, it will change the way that you think about a lot of things and what you're capable and what we might be capable of, I think as a society, if we really put ourselves together for the greater good. But you you're having to deal with all of this other stuff. And then on top of it, you go and you create this foundation. And then this foundation has
Brandy Archie, OTD, OTR/L
should do.
Amber Olsen
Yes.
Emilia Bourland
I mean, is really, by all measures, incredibly successful. I want to talk a little bit more about your journey and your experience as a caregiver personally, but I also, can we take an opportunity to sort of highlight where the research is at at this point? Because I want people listening to know that to not be afraid to listen because they're afraid of being sad. Do you know what I'm saying?
Amber Olsen
Yeah, the hopeful part of it. Yeah. Yeah, so.
Emilia Bourland
but also to be able to understand that there's, you have also created hope that goes along with this story.
Brandy Archie, OTD, OTR/L
Yeah.
Amber Olsen
You know, we had to create that there was mice that were already had MSDs. So that was and we knew the gene. So like there's there was a lot of hope to begin with. And so we just had to take it through just we just had to take it through. And they do the animal studies and then do the toxicology study and then, you know, try to find the funding from the manufacturing and clinical trial. And it's really, you know, it's about money. And so we we.
just took it one step at a time and went through those steps. And, you know, it's been a lot of years, but in 2023, government, so there's an NIH, National Institutes of Health, and they fund research, but they don't usually fund actual drug development. Usually a pharmaceutical company does that. And that's where all these rare diseases get lost in the shuffle. There's a lot of great research out there and there could be cures and treatments.
but because we can't, you there's no money to be made, we need the government to step in. And so they did, they created, it's a private nonprofit partnership under the NIH foundation where pharmaceutical companies put in a pot and then NIH put in a pot and they're funding these clinical trials for manufacturing the clinical trials. So it was a grant process and our scientists applied for that and they,
Brandy Archie, OTD, OTR/L
Mm-hmm.
Amber Olsen
got that and then that really secured our ability to move forward. So they're currently manufacturing and hopefully, you know, there'll be a clinical trial late this year, early next year. All that takes way more time than you ever think. It's like building a house. It just never goes smoothly, you know, there will be a clinical trial for these kids.
Brandy Archie, OTD, OTR/L
But just to make sure that the people who haven't seen the documentary understand, you've gotten the funding and the mechanism to be able to have a clinical trial happen, but you also saw that what you think you're gonna be testing worked in mice. Is that right?
Amber Olsen
Yes, yes, yes, yes, it worked incredibly well on mice. the mice, these mice, so they make them have the disease, they genetically alter them to have the disease so that they can display symptoms. And the mice die very quick, because mice only live two years, know, these children live like 13. So they were dying while they were being injected with the gene therapy. And so they actually did not look good in the beginning, and they were sweating it, and they were like, this might not work.
And then they injected them so they're injecting them while they're sick and they lived a full-mouth life like they they you know, we're had past cognitive and motor skills and all the stuff so we had Yeah that that positive green light right away like within a year or so and then the rest of the time was just trying to get the funding
Emilia Bourland
which is so incredible, like to have it be so clear cut that you could have something that was that promising within a year. It really does highlight the fact that at the end, is all, and obviously not for all diseases. We can't take every disease and apply the same thing to it, but for this, like this particular type of condition where we can identify the gene that's involved and potentially, like there are treatments available to,
Amber Olsen
It was.
Emilia Bourland
fix that now. It really is just about money. One of the interesting things that I think that you make in the documentary is about the fact, as you say, you know, Tricare was essentially paying for all of Willow's treatment. And Tricare is insurance that's funded by the government because it's for its veterans and veterans families insurance. And so how much it cost to treat Willow versus how much it
Amber Olsen
in it.
Emilia Bourland
would have cost to develop a cure. And of course, Willow just being one child with this, if you look at that cost comparison, it's actually a no brainer. you look at that cost, the cost benefit analysis is a child's life versus money anyway. And so we should put a cost benefit analysis on that. But if we are, if you're just purely looking at money, it makes sense.
Amber Olsen
Yes, yes.
Amber Olsen
Yes.
Amber Olsen
Exactly, yeah.
Emilia Bourland
actually to put money into this type of research for these diseases that we know we can do something about.
Amber Olsen
Thank
Amber Olsen
Yeah, yeah. mean, she had at the end, you know, she had 16 out well for like the last three years of her life, she had 16 hours of nurse care every day, you know, and she had this amazing bed that probably cost 40 grand, you know, her chair was like probably 30. You know, she yeah, we were paying for all this stuff, all of her medicines and everything. And I'm sure it was going to spend more than it would have been to get just a treatment, you know, for her and we were going to treat the six to eight kids.
Brandy Archie, OTD, OTR/L
Mmm.
Amber Olsen
with this clinical trial. So yeah, it's definitely, and which is why, you know, there is funding for medical research. It's just, you know, there's kind of this, and the BeFolk program that, you know, we're participating in is supposed to be like a template and, you know, give it, where they can publicly, you know, usually a pharma company is going to be developing the treatment. They're not going to share that information. This is going to be publicly done.
Emilia Bourland
Mm-hmm. Mm-hmm.
Amber Olsen
so that all that information will be available for everybody else, like the IND, all the paperwork, all that kind of stuff. So hopefully it'll be cheaper than Lauren and it'll be cheaper to do in the future.
Brandy Archie, OTD, OTR/L
So, since it worked so well in mice, and theoretically it might work for humans, if somebody is, if a kid is dealing with MSD right now, is there anything that can be done in order to advance, like to use this?
this kind of treatment or does it have to go through clinical trials first? I know sometimes in some situations there can be like off-label uses for medicines and different things that happen before it's like officially like marketed to everybody because it does this thing because the clinical trial is done. Is there any kinds of opportunities like that right now in this case?
Amber Olsen
Mm.
Amber Olsen
out right now. they, you know, it's not so it's never so this medicine that was developed is being developed has never been used before. So you can't use off label if it's not something that like we do have some of our treatments are like repurposing drugs and those you could, you know, like if it's a common drug and you got your doctor to give it to you. But this is like, and it's a whole it's a gene therapy. So they need to be done in a clinical setting.
They're going to be monitored. They're injecting a virus into the body. So there has to be immune stuff and all the stuff that goes into that. It's risky. So all that has to be done in a hospital. yeah, everybody's just waiting. And in a clinical trial, and I mentioned this in the documentary, but clinical trial is really for, it's not for treatment. It's for testing to make sure the drug is safe.
And so they are going to kids that so that where they can show efficacy, where they can show that it works. You know, so like the kids that are diagnosed. That are that are older, you know, they're not going to you're not going to able to tell the improvement like you would with like Willow when she was two and she was walking and then you can see like what look, you know, she didn't stop walking.
Emilia Bourland
Mm-hmm.
Amber Olsen
So, which I had to learn to understand that because I was like, well, my daughter needs to be treated. But then that's not what those clinical trials are for. Now, eventually, hopefully, it'll become a drug that's approved and anybody can have access to it, if they have the financial. That's going to be a whole other thing. It's a very expensive drug. It's going to be just like SMA, one of the most expensive drugs ever.
Brandy Archie, OTD, OTR/L
Mm-hmm.
Emilia Bourland
I want to shift gears a little bit and talk a little bit more if it's okay about your caregiving experience of a mother with a child with a terminal illness.
How did the people around you handle that? And if it wasn't the way you wanted it to be, what would you have wanted? And what would you tell folks who are listening now who might not know how to handle these situations to be supportive?
Amber Olsen
Yeah, so people dropped out. We had friends and actually, my mother-in-law, she moved to Florida. mean, people kind of dropped out of our life. And I still have a hard time with that, still struggle with that. But, and then other people stepped in. And I will say,
You know, I made a big public to do about this because I was fundraising millions of dollars. so I, we benefited from that public view, like people, you know, that care about people stepped into our lives and helped us. I don't know how that would have gone in another situation where somebody is not fundraising. I mean, I feel bad for these families that, you know, they're isolated. There's not a lot going on and they don't have that help. And, you know, that's kind of one of my passions now. It was like,
reach out for people, try to develop that team of people that are around you that are supportive of you. Because I just don't know how families do it without a village. I mean, it just takes a village.
Brandy Archie, OTD, OTR/L
Do you have any like, it's a lot to put this on to somebody to have to initiate doing it, but do you have any like action stuff that you would give to somebody? If there's a family who's like, yeah, I don't have a village, how do I acquire a village? I don't necessarily need to fundraise millions of dollars, but like I do want more help. It is financially expensive to like do any level of caregiving and you're often not making the money that you could or would have been making before you were caregiving.
Amber Olsen
No.
Brandy Archie, OTD, OTR/L
So your income is even less. So do you have any things that you would tell people to do in order to try to build that village?
Amber Olsen
Yeah, so I'm a networker. that's, you know, I'm a, I own a business and I do sales. So, I think, you know, people can solve everything. mean, I just think if you have a village of people, everything can be accomplished. And so I guess my first thing would be like probably church, you know, if you're, if you, if you are religious, go to church, that's, mean, those people automatically kind of surround you.
Brandy Archie, OTD, OTR/L
Mm-hmm.
Amber Olsen
and then just kind of grow it from there. mean, maybe set up some kind of caregiving group, you know, or find a caregiving group where there's people that are in your situation and then maybe you can trade off or help or find out how they're doing it. Just don't say I isolated, which I think is what we tend to do. I mean, it's, you know, it's overwhelming and you're like, I can't leave the house. Like how would I go do these things? But
prioritizing, building that village and self care too.
Emilia Bourland
What this is just kind of a general like open ended question so feel free to take it wherever you want.
What about your experience in caring for Willow and as maybe even as like a family caring for Willow, what's something that really stands out to you?
Amber Olsen
There's so many things. So, you know, because of where I'm at, you know, where we went over the last year, she passed away in October of last year, but really the last two years, she was not doing great. was, in my opinion, she was suffering.
I realized like, so when you're, you know, when you're diagnosed with this and you go to the doctor, we go to the doctor and it's like, okay, let's talk. We're all about treatment and care and symptom management. Like that was, that was our job. So every time we went to the doctor and there's a variety of them, like people do, you know, the pulmonologist, all the different people it's like, what are we doing? What thing are we adding in? Cause we had just continually added stuff in, drugs in, added nebulizers in, added
You know, and at one point she got pretty sick when she was like four or five and was in the hospital for a week, with pneumonia and, know, we're like, what do we add in? like we added in pulmo court and we added in, you know, the different nebulizers. do the shaky vest. do the, you know, we were doing all these things. That was our job. Like come back from the doctor and that's what you do. And then the documentary came out and we'll, was struggling. And like the light switch just flipped on in my head one time.
And I'm like, what are we doing? Like, what are we doing right now? Like, she is gonna, she's suffering. She's well, she's not going to hospital. We've done an amazing job. She has amazing care. We gave her, like I went out and found this food. It's called Nourish. You know, it's a natural food that you put through the tube. It's the best thing for you. She ate better than any of us. Like, did all the things, all the vitamins, all the things. And then I was like,
we have put her in a place where she's not gonna die from pneumonia, not anytime soon. And so now, what have I done? I was just like, I didn't see the forest for the trees. I'm lucky I had the documentary, because I saw her over time decline, and I was like, holy crap. Like in the conversations I had when she was three and four about not wanting her to suffer, and then now I know for sure she's suffering. it just, so I just,
Amber Olsen
I don't think people get that opportunity. You're knee deep in it. You're saving your child. You're doing what you're supposed to do, but like to step back. And I think this is where palliative care, you know, think they missed the boat on this a lot of the time because our palliative care appointment was the same time as our complex care appointment. And those two things don't go together. It was like, okay, what medicines are you giving? And then, okay, let's sign the DNR, which we signed the DNR long time ago, but we didn't talk about like,
Brandy Archie, OTD, OTR/L
Mmm.
Amber Olsen
the state that she was in, that we had brought her in.
Brandy Archie, OTD, OTR/L
Yeah.
Emilia Bourland
all the other stuff that happens before there is a DNR situation and like where the decisions that you make to prolong it or not prolong it.
Amber Olsen
Yeah.
Amber Olsen
And I'm not saying we shouldn't have done those things. I'm just saying I never evaluated it. I was just in a mindset of like, okay, now we do this, now we do that. Now she can breathe, she can cough it up, she can do this, she can do that. But there's this other part of it. It's like, she's gonna die. then I started focusing on how do we let her die in a peaceful way? I like...
talk to doctors and stuff. And I'm in kind of a bad regional area. You don't have a major hospital here. It's three hours away and there's no pediatric hospice. So that's kind of my passion now. That's where I'm, you know, it's like people are like, well, you created the treatment and say, you know, trying to save these kids. And I'm like, I was, I was trying to like not make them suffer. Like the whole thing is about suffering.
Brandy Archie, OTD, OTR/L
Yeah, that's such an interesting point, I think, because I think it's a thing that most of us don't think about. Like, even when people are dealing with diseases that are progressive, but they happen later in life, you know, we're as the caregiver, you're doing the thing. Like you said, you're doing the thing. And we hardly stop to think about like, well, what does it look like to facilitate a death that is not painful or in suffering? And like, how do I know when that's happening?
Amber Olsen
Yes, yes.
Brandy Archie, OTD, OTR/L
so that I can be like, okay, we're not gonna do XYZ treatment anymore. And you're right, that's definitely what hospice is for. We've talked a lot about that on the show, as far as adults, but hadn't even considered pediatric hospice, and you didn't even have the opportunity to engage with those professionals, because it's just not in your area. If you were talking to somebody else who's dealing with this kind of thought process right now and doesn't have the support of hospice, our number thing, one, would be let's get hospice in to help facilitate this.
Amber Olsen
Right.
Amber Olsen
Yes. Yes.
Brandy Archie, OTD, OTR/L
But let's say they don't have that around, or maybe one parent doesn't want to do it, or whatever. What made you stop and think? And is there any way for other people to initiate the stopping and thinking about that process? Like you saw the documentary, you got to go back and see her whole life.
Amber Olsen
Yes.
Amber Olsen
Yeah. I know. Yeah. Yeah. I mean, I think it's, you know, kind of stopping what you're doing and being self-reflective of the situation, maybe writing it down, maybe writing a story about it and like where their child's been and where they're at. And, know, if you have this terminal prognosis, I think, yeah, just stepping back and looking at, and, you know, and, and I mean, we can talk on this, but I think we're self-sacrificing ourselves as a caregiver.
to, like both parties are not winning. Like it's not a win-lose game, but both parties are not suffering. Like we are on the cross, I say this all the time, I'm like, don't put yourself on the cross. Like you don't have to be crucified on the cross because you're a mother, you know, or you're a daughter, you know, it's like, what are we doing here and what choices can we make? And with the parent, you know, have those conversations early on with your parents.
Emilia Bourland
Both parties are suffering, maybe.
Brandy Archie, OTD, OTR/L
Yeah, yeah.
Amber Olsen
you know, and say like, where do you want to be and what do you want to do and how do you see this? When we were, I was talking to one doctor and she's an oncologist and so she deals with, you know, pediatric cancer and end-of-life stuff there. And she's like, you know, it's like a birth plan. You have a birth plan when you have a baby, you know, have a death plan, you know, like let's plan out the death and death is not the enemy, suffering is. And so, and both parts suffering, you know, and I just see families that,
Brandy Archie, OTD, OTR/L
Mm-hmm.
Amber Olsen
don't take in nurse care and they're just doing it themselves. like, man, you're gonna, I would think nine times out of 10, you're gonna get sick because you just can't do that to your body and your brain for so long. And I see so many caregivers of go a little crazy. It's like, kind of lose yourself.
Emilia Bourland
also think it's for anyone who might be listening to this now and like you're in this situation, it's so hard. Like it's gotta be almost impossible to know where that line is in the moment, right? Because to your point, you're just like, okay, well, this is a problem and here's something that can solve it. So we're gonna do this to solve the problem. And like, how do you know to say no to that? And kind of,
Amber Olsen
Yeah.
Brandy Archie, OTD, OTR/L
Mm-hmm.
Emilia Bourland
going back to highlight what you just said about conversations, do you think that it would have, you we, talk a lot on CareLab about like having conversations early about planning for aging in place or planning for what someone's end of life care wishes are for older adults. We don't necessarily talk about this with children because we don't want to think about the fact that things can happen to children and children can pass away because it's
Amber Olsen
Yes.
Emilia Bourland
It's too awful. It's just too awful, right? Do you think that it would have been helpful though to you and to your family if there had been some way to initiate like that type of conversation with you early on versus just like here are the treatments, here's how we keep comfortable, but also like we know the end of this.
Amber Olsen
It's Mm-hmm. Mm-hmm. Yes.
Emilia Bourland
Which to your point, we know the end for everyone. We're all gonna die. There is no way around that. So in this case, we know that the end is gonna come sooner than later. Let's talk about what you want that to look like and really understanding the nuts and bolts of what life will be like the longer that we continue to prolong things. And knowing there's not a right or wrong answer. There's really not. It's just.
Amber Olsen
Right.
Amber Olsen
Yeah.
Amber Olsen
Yes. Yes.
Amber Olsen
Right.
Emilia Bourland
going in with eyes as wide open as you can so that you know what your line is.
Amber Olsen
That's exactly it. Yeah. mean, so many times, you people would be like, well, you're going to know. I'm like, that is the dumbest thing anybody's ever said to me. I'm not, I'm not a medical professional. I've never seen anybody die. Like I don't know. I don't know. I did not know at the end, even when she died, I was like, she looks the same as she's always looked like. don't, you know, like I'm not a medical. And that's what I think, you know, we got to say it all the time. We've got to say it frequently at every appointment. The whole team needs to be on the same point.
And there needs to be some, for me, I wanted some support from the doctor to be like, yeah, it's getting to be time. Like she is struggling, you know, and like, you know, saying that kind of thing. And I think, you so, you know, this was complicated because my ex and I, you know, her dad and I got a divorce. And so then we're polarized because of the divorce. And then, so we can't come together. The other thing that
because I ran a foundation and I talked to families every day all the time. So I knew how every kid died. I knew how I had gone through that conversation with every parent and he did not do that. like, and I'm going to all the appointments. and this happens, you know, I've heard of this like with, like there was a guy that his mother died of cancer, right? And she decided not to do the fifth round of treatment.
her brother, so his uncle was like, why didn't you do the last round of treatment? And it's like, where have you been? You weren't there the whole time. You didn't have all those conversations. that's part of its frequency of these conversations. We just have to have this, I've had this conversation, by the time we made it, I knew all these kids and how they died. I had talked to all the doctors and then her dad was not having these conversations. So he's just like one sided, he's like, what? What? At one point I was like, we're have to just stop her feeding too.
Emilia Bourland
Mm-hmm.
Brandy Archie, OTD, OTR/L
Yeah.
Amber Olsen
You know, like, don't know what we're doing here. Like, she's not dying of pneumonia. So like, we may have to pull her feeding tube. my God. Like, you're going to starve her to death? And then I had to the doctor explain to him, that's not what you're doing. So, you know, all of those things, the frequency of the conversation is so critical. And so doctors need to have that conversation every single time that you're in an appointment, I think.
Emilia Bourland
You carry so much emotional weight. Do you know what I'm saying? Like you, not just the weight of yourself as a mother and your family, but like it just strikes me as I'm listening to you, like, you know all these other families and their children and how their children died. And that's an immense amount of emotional weight to carry.
Amber Olsen
Mm-hmm.
Amber Olsen
Yeah.
Amber Olsen
Mm-hmm.
Emilia Bourland
Are you, how are you taking care of yourself?
Amber Olsen
Yeah, so this is like my other, you know, death and self-care, like my thing now. So, because I, you know, I went through the burnout. you know, we, got my, her dad came to me in May of 23, I think it was 22. It was like, I don't want to be buried anymore. Like my world just fell apart. And that was probably a gift because I was full steam ahead and I was starting to lose
grounding. I did some self care and I have a therapist. I've a therapist this whole time. I've talked to every week. But at some point, yeah, it's too much. It's too much over and over. I went through seven years of like, we're gonna have a treatment next year. We're gonna have a treatment next year. We're gonna have a treatment next year. Families are coming to me and they're like, when is the treat? It was so much pressure. And so I was finally falling apart. And I'm not still,
Emilia Bourland
Yeah.
Brandy Archie, OTD, OTR/L
Yeah.
Amber Olsen
kind of keeping it together. But I realized, so when that happened, I stepped back from the foundation and I was like, I can't do this anymore. It was just, was like, what, I can't, you know, the divorce is horrible if you all have been divorced, but it's awful. And, it gave me the out of like stepping back to the foundation. So I don't know where I would be if I was still doing that. I would, I would probably be,
You know, I think people start to get sick. I mean, it's just, it's just too much. You carry that stress. So then I've been focusing, like I do yoga. do, um, lot of breathing. I'm getting ready to write a book or some kind of blog or try to, you know, I'm trying to use that to cope. mean, just constantly seeking out things to try to help me cope.
Emilia Bourland
Mm-hmm.
Brandy Archie, OTD, OTR/L
Mm-hmm.
Brandy Archie, OTD, OTR/L
Do you have, one of the things we talked about early in our conversation was about reaching out and creating a village. And, but part of that requires you to talk about it, right? And like when we are dealing with things that are hard.
Amber Olsen
and
Brandy Archie, OTD, OTR/L
it's oftentimes many of us will just not want to talk about it so that we don't have to like deal with it. And you talked about it a lot, right? Like you had to let cameras in to have the documentary happen. You broadcast it to everybody so that you could try to get people to understand it and to raise money. You talk to other families. And so you talk about it a lot. You're even talking about it to us now and it's not even been that long since she's been gone from this earth. And so can you talk just a little bit about...
how you manage to be able to talk about it. Like, just like, do you use any strategies or tools that help you be like, I can talk about these things, I won't say these things, those tip me over the edge, or how do you think about like, letting out the things, because that is helpful too, to be able to let the things out, but also not like, let everything out, or how do you handle that, guess.
Amber Olsen
this.
Amber Olsen
Yeah, so I mean, you know, was, it was fundraising. So it was therapeutic and we were fundraising at same time. So I was sharing it on social media and I'd be like, today we went to the doctor and they, you know, had assigned the DNR, you know, like, you know, I would just share all that because I'm like, people have no idea what these families are going through. And so I felt like if I just kept telling people they would help when they did. so I kind of got it out that way. So kind of a dual purpose, if I didn't have that purpose, I wonder how
Brandy Archie, OTD, OTR/L
Mm.
Amber Olsen
that would have, because I wasn't a sharer on Facebook. I was just like, I was just, but then like when this happened and then I got the results of it. So, mean, I do share with my family and with my therapist. I mean, I cannot suggest therapy. I mean, like if you are going through this, you have to have a therapist. Like I don't know how people do it without a therapist. I don't know how people really do life without therapists, but you gotta have something, because that's, can talk to her.
And she can, she has no agenda. So like she can give it back to me like with her only agenda is helping me. like whereas everybody else has an agenda. So if you can get a friend like that, that has no agenda or you know, a parent or somebody where you can help talk it through, cause people just say dumb things. And so, you know, like I'll be talking to somebody and they'll just say something dumb. And I'm like, that's not helpful at all. So that's why I like her so much. But,
Brandy Archie, OTD, OTR/L
Yeah.
Emilia Bourland
Mm-hmm.
Amber Olsen
And I think writing, you know, if you're not comfortable sharing it, writing it down, like posting on Facebook, I didn't have to say it. just wrote the words, you know, and how I felt. And I think we're scared to do that sometimes because we look like the victim. You know, it's like, no, I'm the parent. Like this is my duty. And this is kind of funny side story. Pat, who does the documentary, he he's lived down here too on the coast. And he was,
he was talking about the documentary, I think he did a showing of it or something, and his neighbor was like, yeah, you know, that's something else, that story and everything. And she's like, you know, I just think that, you know, it's her kid, like, she's got to take care of it kind of thing. You know, like, some people do have that mindset of like, sure kid, you know, take care of it. And so we worry about that. But there's so many amazing people out there that I think, you know, you can share, and people will, you know, come and support and just those positive
comments I think sometimes help. you know, sharing with people and just letting it out, just talking.
Emilia Bourland
No, think, and I understand, certainly there's like that perspective, like, this is your problem, it's your kid, my kids are healthy. Thank goodness my kids are healthy, I don't have to deal with this. You know, I guess how I think of that is when we're in that position, we can go around thinking that that's like a guarantee that because it's like that now, that it always will be. And that's just not the case. And that's just not the case. We don't know what's around the corner.
Brandy Archie, OTD, OTR/L
that.
Amber Olsen
Yeah, you're granted. I mean, you know.
Emilia Bourland
we don't have control over these things. And so, I mean, yeah, we can go through life and say, it's not me, it's not my kid, that's someone else's problem. But I think I really genuinely think that even if it's not me or my problem, I'm a better person, my life is more full if I can engage
Amber Olsen
Yes.
Emilia Bourland
in a way that makes my community and my world better, right? Because like even from purely selfish reasons, I feel good. And the fact is that someday we're all gonna need some kind of help. None of us exist in a vacuum, you know? So thinking about how we can make even small decisions, we don't all have to go start foundations, right? But like the small decisions that we can make that are
Amber Olsen
Thank you.
Amber Olsen
Right.
Emilia Bourland
that are kind and that are generous and that are thoughtful. I think it goes a long way towards making it a world that we all wanna live in, regardless of what's going on with us. I wanted to ask you a little bit about, as you said, Willow passed away in October last year. How has your experience been since then and how has your life changed? And I know like that's still,
Amber Olsen
Right.
Emilia Bourland
That's very fresh.
Amber Olsen
Yeah, it's evolving. I'm still trying to figure it out. I mean, the biggest change, and I this was coming, but I didn't know how to deal with it, is my day-to-day life. When you care for somebody 100%, and Tom and I, so he had her one week and I had her one week. So we did have, we shared that.
So I did have a week off, but my whole mind for years was like, what's next? What's, I mean, like, what's her poop like? What's like, how much is she coughing up today? Like, did she keep her food down? Did she throw it up? Like, that's like, even when I was at work, you know, the nurse would text me and, you know, and I'd be like, how's she doing? You know, so that, at first I was just kind of like wandering around.
And I still, you know, I talked to a friend of mine the other day and she's like, so what are you doing now? And I'm like, I have my company and she's like, when you step back from the foundation, I was like, yeah. And so she's like, so you just are doing your work? And I was like, yeah, I'm doing, yeah. And I'm doing, yeah. Yeah, I'm doing the documentary stuff too, but yeah, I'm like, yeah, I know, you know, I gotta have ideas for the next thing that I want to do, but yeah, I'm just kind of wandering around is what I feel like right now.
Emilia Bourland
Like a normal person? Like a regular person?
Brandy Archie, OTD, OTR/L
You're like, doing normal stuff.
Amber Olsen
Trying to get out of bed every day. Like that's what I'm like, I gotta put all my stuff in place so that I can get out of bed. And really taking care of myself, know, not as, mean, never a hundred percent, but like every day I'm like strategically like, can I do today? Okay, I'm gonna go to yoga class. I'm gonna walk. I'm gonna, you know, talk to my therapist. I'm gonna talk to a friend. I'm gonna, you know, things that keep me going. Cause I, it's like so natural to like,
give up, who wants to be, you know, in the documentary I say this, mean, one of the moms is just like, I don't want to live anymore. I just want to be in heaven with my child. And, you know, and I totally get that. I totally get that. you know, this moment, just keep the momentum moving forward. And I'm omnipresent too. I mean, I'll say that too, you know, like a drugs, like, you know, whatever it takes to, it's, it's brutal and your life's forever changed.
Brandy Archie, OTD, OTR/L
Mm-hmm.
Amber Olsen
I mean, I cannot see things the way that I saw them before. I mean, it definitely changed with the diagnosis, but then with the death, you know, things just seem almost more relaxed because things don't upset me as much. like nothing is as bad as what happened. like whatever you're fighting about or whatever's happening, you know, it's not that big of a deal. mean, a child died, the world, you know, the world should have ended. In the beginning, you're like that. It's like, why does the world keep going? Like the world should have ended.
Brandy Archie, OTD, OTR/L
Yeah.
Amber Olsen
And I've been to a lot of patients with people, I still don't, but yeah. I think that caregiving though is like that, and this is, worry about, I'm sure you guys talk about this for caregivers, your life was caring for that person. Like your job was to care for that person. When you lose them, what do you do? You lost your identity, you lost your daily work. Like, you know, start drinking and doing drugs, like, you know, it's like.
Emilia Bourland
Yeah, I mean, that's what like in as in occupational therapy and Brandi and I are both OTs like, like you lost your role, you lost your occupation, you lost the thing that was giving you meaning on a daily basis. I think it's, I think that's something that stands out to me about you in the way you've handled everything. And again, I really encourage people like go watch The Zebra and the Bear. It is, do not be afraid to watch it because you think it will be too sad. Please do not be afraid.
You can handle this, but you are so intentional about the way that you approach everything. And even now, like talking about being intentional, saying, OK, what am I going to do today? How am I going to find that purpose today? How am I going to find that meaning today to keep just putting one foot in front of the other? It's really remarkable, actually.
Amber Olsen
Great.
Amber Olsen
Thank you. all I know to do is just keep getting up.
Brandy Archie, OTD, OTR/L
Yeah, it's like the simplest and the hardest thing at the same time, right? Just keep getting up. Just keep getting up. Amber, we really...
Amber Olsen
It is. Yeah. Yeah, just focus forward, know, instead of focusing backwards, like where can we go with this? Yeah.
Brandy Archie, OTD, OTR/L
We really appreciate you coming on the podcast and sharing your story. I really appreciate you for making the documentary and sharing it in such a visual, sharing your story in a visual way so that people could walk through your life with you. If people, what's the best way for people to be able to connect with you or watch the documentary or follow up with the foundation.
Amber Olsen
So zebra in the bear.com is the documentary website. You can go on there and right now we're doing Like showings and groups so to try to get the biggest impact for the film So like, you know universities are watching it companies are watching it so that scientific companies so that their employees can Can feel good about what they're doing? So, you know, we'd love to do more showings. I'd love for like pre-med students and medical students to see it
Brandy Archie, OTD, OTR/L
Mmm.
Emilia Bourland
Mm-hmm.
Amber Olsen
And so you can sign up there. You can also sign up to follow what's happening at zebra and the bear. And then the United MSD foundation is the foundation I've created. You can follow it on Facebook, at Cure MSD, Instagram, all the other things. And people can do fundraisers or they can donate to share what's happening at the foundation. A lot of amazing, great things. So, we'd love the support.
Emilia Bourland
Well, thank you again for being here with us today on Care Lab. Listener, if you have made it all the way to the end of the show, please take a second first, check out those show, check out the show notes. That's where all of the information about the documentary and the foundation are linked. So you can go take some action there. And then the next thing that I want you to do is to please make sure you hit the follow button, the like subscribe button so that we can help to grow this kind of
Amber Olsen
Bye.
Emilia Bourland
information and resources that we're trying to put out there on the Care Lab podcast. Thank you so much for listening. We'll see you right back here next time on Care Lab.
Brandy Archie, OTD, OTR/L
Bye, everybody.
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