Communicating with the Care Team During Treatment

Narrator (00:02)
A child's diagnosis of cancer or another serious disease is difficult. Families, guardians, and loved ones experience a range of emotions and often need support related to their child's diagnosis and treatment. St. Jude Children's Research Hospital brings you Caregivers SHARE, a St. Jude podcast. SHARE stands for support, honor, advise, reflect, encourage. In this series, you'll hear stories and insights directly from the experiences of St. Jude families and care providers. 

Tekeima Townsend-Billups (00:37) 
Advocacy is the sacred practice of love in action that moves one to speak up and speak out, especially during the course of a child's medical treatment. Communicating with the care team may feel like learning a new language, yet with courage and time, it can build a bridge to stronger connections deeper trust, and shared purpose. I'm Tekeima Townsend-Billups, senior staff chaplain at St. Jude Children's Research Hospital, and in this episode of Caregivers SHARE, I'm talking with caregivers Tasha and Dean Ives and patient family-centered care expert Brittany Barnett about communicating with the care team as one's child goes through a serious illness. Brittany, will you start us off by introducing yourself? 

Brittany Barnett (01:28) 
Sure. Hi, I'm Brittany Barnett, and I manage the Patient Family Centered Care Program at St. Jude. I get the honor of partnering with caregivers, past patients, staff, and clinicians to ensure the family voice is heard and valued throughout the institution. PFCC follows 4 core concepts, respect and dignity, information sharing, participation, and collaboration. Much of what I do is to advocate to ensure these 4 concepts are accomplished by our families by being included in the programming, initiatives, research, and future planning at St. Jude. 

Tekeima (02:03) 
Thank you, Brittany. Tasha and Dean, please introduce yourselves as well and tell us a little bit about your family's journey. 

Tasha Ives (02:11) 
Hi, I'm Tasha Ives. We live in the Nashville area and we have two beautiful children. Our son Carson is 24 years old and is on his second year of marriage, which is crazy. So we have a beautiful daughter-in-law. Lindsay.  

Our daughter Sydney is forever 11 in our eyes. She went to heaven in 2009 after an 18-month battle with a terminal brain tumor.  

And so when we first saw signs of that, that something was off and something wasn't quite right, it was May of 2008. And it was just after a series of separate explainable symptoms, what we thought were detached symptoms that didn't have anything to do with one another.  

She was dropping her punch at my cousin's wedding. She was tripping, you know, kind of falling. I am a notorious klutz, just had a conversation with our son about this, that he is also like falls over nothing. And so that's kind of a trait that I've passed down. So we thought, oh, she's just going to be a klutz like mom and... And but, one day in particular, I took her to her first piano lesson and she was nine and a half years old. And I sat behind her and the piano teacher, as the teacher said, go ahead and put your hands up on the keys. And when she did, her right hand just fell limply to her side, much like you would think of if someone had a stroke. And that piano teacher just looked back at me and. Like what's going on. And I instantly knew we had a neurological problem.  

I remembered a few weeks prior, she kept stepping out of her right flip-flop and we thought it had just stretched. You know, she's like, I must've forgotten how to walk in flip-flops. So I'm like, oh, you don't forget how to, I bet it's stretched out. Just little things like that, that started to all add up.  

And that scene that day led to an outpatient CT scan in our hometown of Rockford, Illinois. And... That outpatient CT showed a very large brain tumor and her thalamus and that she had to be admitted right away. So that sent us to UW-Madison and then on to where we would have treatment later.  

But at first, those separate explainable symptoms were that it's a bad sinus infection. Oh, she had strep throat. Oh, she had a wart on her hand. That's why she's not using her right hand to... write in class. There were all of these other things until I finally, you know, kind of kept persisting and kept persisting to say, we have something else going on. I think we need a CT scan. And that's when we finally got our diagnosis.  

She was treated on a trial protocol for a year. And then the tumor progressed into her brainstem. And we had six months with her following that. And she died in November. November 7th of 2009. 

Dean Ives (05:17) 
First of all, I just want to say thank you for this opportunity. We always enjoy the opportunity to share about our little girl. So my name is Dean Ives. I have the privilege of being Sydney's dad, also Carson's dad. So I realized I had been saying Sydney's dad and just was talking to my son this morning. So I am also very honored to be Carson's dad. And as Tasha said, it was just a journey we never, you know, you never expect, never plan on. But since then, I think the beautiful piece is just taking that pain and turning it into purpose. And we've done a lot since then and just being able to work in different facilities, sharing our story and the hope behind that, even through the worst period of our life. I mean, I don't wish this on anybody, but it's also such a beautiful piece of learning how to give back in this pain that we went through. And being able to mentor, doing different things through our community and different facilities there. 

Tekeima (06:23) 
We appreciate you both for being here with us and sharing this story. 

Tasha (06:29)
Thank you for having us. 

Tekeima (06:31) 
Thinking back to when your family first came to the hospital, did it feel like you were learning a new language, trying to understand Sydney's diagnosis and engage with the care team? 

Tasha (06:43)
Yeah, definitely. There was terminology that was used that we weren't familiar with. I do have a very large family who, just by how life works, had a lot of medical issues happening. And so I had been around people who had gone through cancer and other things. So I wasn't completely unfamiliar with it, but specifics, especially when it's about your child's brain.  

I did what doctors will tell you not to do. And I looked everything up and, and, tried to, you know, for me, that was helpful for me to wrap my brain around, what it was I was, we were facing and looking at. And so, they, if they would give me information, I would go look that up to kind of find out a little bit more of that.  

I also just, you know, kind of felt like we were in a foreign land that, you know, didn't feel like home at first. It felt very unfamiliar and we really had to forge a way and be super intentional about making it adapt to our environment, to have our whole family adapt to that. 

Dean (07:58) 
Just to kind of, for our audience, just kind of paint a picture a little bit moving forward, just so they kind of know our personalities a little bit as we get moving forward, is just my, you know, yes, when we showed up. You know, the language, everything here was so different, but also my background being more of a, growing up with just the story that I'm thinking of… I just remember sitting as a family, my siblings as a young man, a young kid and getting served a pizza that had anchovies on it. And my dad was just basically the man that was just don't send it back. Just eat it. You know, we just, okay. You just eat it. You just take what's served to you. You know, don't ruffle any feathers. So with that, that's kind of going into this where I've learned and grown through that. Not bad. It wasn't, I mean, I didn't have a horrible… I hated my upbringing, you know, because of that, but it's just also has formed me who I am today because of that.  

But showing up at this facility, you know, with my family, being the dad, the father, and feeling like where are we at? We're on this different planet almost in this world that there's no book. No instructions, you know, and it's just like being a calm, trying to be the calm to my wife and my kids. And, we're good. We're good. We haven't had food, you know, our luggage is gone. You know, what more can go wrong? We're good. We're good. We're good. So finding that good in this. And so it was very like, everybody was speaking such a different language. And then we were here after hours. So it was definitely like people that were trying to help. But also we were just deer in the headlights at that point. 

Tekeima (09:44)
Those first moments seem like they can be quite overwhelming. And overwhelming seems like it is an understatement in this experience. But as you're saying, it's akin to being dropped into an unknown world with its own language and culture. But your love for your child leading you.  

Health care settings have many voices: doctors, nurses, social workers, chaplains, psychologists, and so on. And it can take great effort to make sure your voice is not lost and that your child's voice is honored too. How did you find ways to ensure that each of your voices were truly heard? 

Tasha (10:34)
So from the very beginning… Honestly, I think about our diagnosis and what I even had to advocate for just as they were giving us the news in our hometown. It was a holiday weekend. We were in outpatient CT, full waiting room, full of 30 strangers. And we were waiting for the results to be read and then what we were going to do from there.  

The receptionist of the waiting area says, “Mrs. Ives, there's someone on the phone for you.” And it was the doctor. Not our doctor, but whoever read the scans and said—as I'm standing in front of 30 strangers, my daughter and my husband kind of over in a corner—“Your daughter has a very large brain tumor. She's a high fall and seizure risk. She needs to be admitted right away.”  

And so we're sitting there and I'm like, okay. And so I hang up the phone. And I go over and we're kind of huddled and I'm telling them this very private information in front of all of these people. She starts to cry. Dean is crying. And I finally have the presence of mind to say, “Could we have a private room, please? Is there a place we could go?” So we have phone calls to make. We don't know where… we were told to sit put until they decided where we would be going for biopsy and so forth.  

And it was in that moment, just I think that probably was another piece of what advocacy looks like. It's not just always in the direct medical care, but also like what does our family need right now in this moment? So that was a big part of it from that moment of almost being dropped in, and I say this with all due respect, but like in a war zone of sorts and just kind of having to take stock of your surroundings and where should I be at this moment? What's the best place? And really just kind of coming up with a game plan in the moment of what's right for your family.  

So from that point on, we went to the hospital where she was diagnosed and she had a biopsy. MRI concluded it was inoperable. It was in the thalamus, the engine of her brain. And we really weren't given a whole lot of time. I remember our diagnostic neurosurgeon was amazing and very kind, very concise, very, “It is cancer, it is inoperable.” And I just said, “Okay, have you ever seen anyone with this diagnosis go on to lead a normal life expectancy?” And he said, “I'm sorry, no.”  

And so I had a moment, I walked away in a corridor, a private moment to myself. And then it was, we have to go upstairs and give this information to Sydney. And so the whole way there for me, what I do in my faith, I didn't have words to pray, but I wanted words to say to my daughter, because how do you tell your nine-year-old daughter that she has incurable cancer in her brain? And she was just a few weeks prior to that running and singing and doing all of the things that she loves, very independent, very intellectual. Having a conversation with her was like you and I having a conversation. And so the only thing I needed to do was I just said Jesus like over and over because that was my prayer. And I know that's not everyone's faith, but that was what helped me. And so I didn't know what to pray, so I just said that. And it was essentially like, give me the words to say.  

So going into her room and saying, “Hey, Sydney.” And she just kept looking at us like, I know you have the answers and that's what I'm waiting for. And I said, “It is cancer.” And she said, “Am I going to die?” And I said, “Well, we're all going to die one day. And I don't know how many days you're meant to live on this earth, but you won't die before that number of days. And I don't know if mommy will go before you or not.” We've known people who were healthy and well who died. I was in a car accident where a friend was killed. She was healthy and died before that. We've known people who had been told they were terminal who are alive and well today. So I said, “I don't know when you will die, but I know we're going to do all we can medically as long as that's okay with you. And we'll leave the rest in God's hands.”  

And she sat for a moment, she paused, nodded with the most like, resolve I've ever seen and said, “Okay, I'm in.” And so we gave her, at that moment, the chance to start and be a part of the conversation. And through every part of the journey, even at that age, she knew her body. She knew what felt right and what didn't. And when we were dealing, especially with the terminal diagnosis, it was more, Oh, this doesn't feel good for you? Okay, it's probably not necessary for us to do that. As long as we all got on the same page of what our goals and plans were. 

Tekeima (16:02) 
It's amazing to see how in such a challenging and difficult time, you find spaces or pockets of peace or hope and strength. I imagine it being so empowering for other parents and caregivers to hear that you did what was right for your family in the moment. And that was initially and in the beginning.

And I love that your faith helped sustain you through that time. For some, faith offers strength and grounding. For others, the same steadfastness may come from a deep connection to their own values. However we name it, it's beautiful to see how aligning with what provides us meaning can gently reveal a path forward. 

Tasha (17:00)
That is so true. And, you know, I know Sydney had that strong faith as well. And so you could see that the moment that she was like drawing on that strength and that faith and her what gave her hope and peace. And it was really interesting to see a shift because this was a girl who all of her older cousins were petrified to play with her in any scenario where she might get hurt because she would be the biggest crier crybaby and get them all in trouble. You’d just hear her, like there's a wail of a cry all of a sudden they're like, Sydney no! And then I’d be like “What's going on down there? What are y'all doing?”  

And so she literally like… Her whole countenance changed and she became the bravest, strongest, peace-filled person I had ever seen in my life. So much so that we just wanted to be around her. Like everyone just wanted to be around her all the time because they felt all of the peace.  

And we told the hospital at that time as well, they're like, she needs to know every step of the way. Even when we got to where we were going to be treated. Sydney should have the information. And we advocated again. And I said, Sydney will know the information, but I speak Sydney's language. So all of this information will be filtered through me. So you tell me the information or us, my husband and I, and we will relay that information to her.  

Some of it, she doesn't need to know. A prognosis, not necessarily, right? We're going to live every day. So we would kind of gauge when it was appropriate to give her more pieces and nuggets of information, but we never withheld anything that was important from her and gave her the option to speak into all of those things. 

Dean (19:00)
I can quickly share just something that comes to my mind, just again, as I'm just thinking of things that could be helpful to our audience… just as that moment again as we're up in Madison and, you know, having your child ask if they're going to die and just, you know, how Tasha just answered that with such grace and just, and, I just remember, you know, just kind of, as you know, where, where was dad during that moment?  

And it was, I remember driving back, which was like an hour. I don't remember how I got home. It was storming. I remember kneeling at her bed. And if I can say one thing: At that moment, I feel like that mental piece is apparent. You're just like, what direction am I going to go? And the world wants to basically get you to just subsistence, whatever, I give up. This is not right. This isn't normal. This isn't fair. Angry at God, whatever you want to call it. But that's the moment where I really feel like. I just said, I give up, but I give in. You know, I'm not in control of this. This is about Sydney. I need to grow up, put on my big boy pants, and be a dad. And it was really empowering, I think, for what was in store for us in this war, in this season.  

So I just, I've always liked to share that because it just, it's a horrible feeling, you know. And it's just to go, what timelines? This is my little girl. This is my world. I mean, she was my buddy, you know? And so at that point, I mean, as we'll talk more into it, but it's just it just was such a point where I put a stake in the ground there. And I said, whatever we need to do, we're going to do it as a family and we're going to move forward. 

Tekeima (20:51) 
It reminds me of how we've all learned different things on our journey. And one of the things that I have learned along the way is that, you know, when I'm faced with a challenge, when I'm faced with loss and deep pain, I can stand in that and curse the pain. I can stand in that and shout at my higher power. But I realized that's so exhausting.  

It takes so much more energy to hold that pain and to hold the anger too. And I'm certainly not saying that anger doesn't have its place because it had its place in my life. But being able to realize that this is what life is giving right now. Let me figure out a way forward that is healthy and meaningful. And supportive of what the needs are right now. So I think that's such valuable information, really a nugget for our listeners to hear that.  

It doesn't mean that, again, you've given up or have gotten to a place where you have no hope, but you are moving forward with a different set of circumstances, still maintaining your hope. And making the best of what life has to offer. So thank you for sharing that.  

I'm wondering, too, if Brittany has anything to share from a patient family-centered care perspective. 

Brittany (22:43)
Yeah, I would love to. Dean and Tasha, I've known you guys for a long time, and I've had the honor of watching you both become stronger advocates for your girl even after she has passed away. I wonder what you could provide for families who are going through this right now, or maybe it's fresh, and they are trying to figure out what advocacy looks like for them. Because I know we've talked about this a little bit in the past. Dean, you've talked about just anger and not knowing where to necessarily ask the questions or how to ask the questions. And I've heard some families say that that they feel awkward pushing back or that they're pushing back at all by asking a question. Can you talk a little bit to how you both worked to find your voice, even when it was difficult or it did ruffle some feathers? 

Tasha (23:37)
Yeah, for sure. There were times there in the beginning of our first arrival at the hospital where it felt kind of hopeless. When you're facing, especially a terminal diagnosis to begin with, and we aren't, we don't know what we don't know. We're not neuro-oncologists. And so I was constantly asking our doctor, “Okay, so we're doing full brain radiation. Are we hoping then it will shrink and then we can remove it? We're doing this targeted therapy. Is this what we're hoping?” 

And his answer was continually, “Oh, that's very doubtful. It's very doubtful. Nope, that's very doubtful.” Well, what about this? “No, that's very doubtful.” And so finally, I just kind of put my hand on the table and I was like, “Okay, then what are we doing here? Because if everything I'm asking, it's very doubtful, this can't happen, this can't happen, this can't happen. Tell me what we're here for. I need to know that we have hope in something or I'm taking my child and we're going home where she's comfortable or surrounded by everybody that she loves and knows. If we're not doing anything different for her here than we would at home… I'm not just here for research. I'm here to do what's the very best for my child.”  

And so It looked like kind of pushing back a little bit. And I think he respected that. It took maybe about a night. I went back to our hotel room and I called our pediatrician who was very involved, originally went to school to be a neurosurgeon and then decided to do general pediatrics, which he does all over the world. And so he had a lot of information. He read all of the scans. All of the paperwork and records. He was giving me the same exact information, but he was saying it in a hopeful manner.  

Instead of saying, it's doubtful that we can do that, he said “It's hopeful that Sydney would be comfortable. I feel that it's very possible that she could have a good quality of life.” Just how he phrased the same information he was giving me was very different. Our pediatrician then got on the phone with our neuro-oncologist and they had a very in-depth conversation where our pediatrician, who had been taking care of our children for their whole lives, informed our neuro-oncologist on how you need to talk to Tasha. And our neuro-oncologist the next day told me they had a wonderful conversation. He highly respects our pediatrician and wishes that pediatrician could be his own child's doctor.  

After that, we had more camaraderie. We were more on the same page. We understood each other a little more. He understood that I was not in denial, but that I asked questions to understand. But I am also going to always live in hope and hope that my child is the one that takes the medication where they find the cure.  

I think every parent whose child is sick… it would be really weird if we didn't hope for that. If we didn't hope that our child was going to be cured, that would be kind of a, well, you wouldn't say, I hope they're not the cure. Hope they don't find the cure with my child. Nobody is going to say that. So we all walk with that hope in us, and hope and realism can coexist.  

For those to live amongst each other, coexist and live inside of you is where we found that. So as far as finding our voice, if you're new in this journey, talk to somebody you're close with. If that is your pediatrician, get a little more information from them. Maybe it's a social worker that is available to you. Maybe you don't know who's available to you yet. And so maybe ask the doctor… or nurses are a great place to get information of that sort of thing. So maybe when the nurse is in the room and they're helping take care of kiddo or you're in one of your clinics, just say, Hey, we're really feeling a little lost. We're not quite sure what resources we have available. We're not quite understanding everything that the doctor is saying. It's just kind of gone over our heads. I don't know if it landed right. I don't know if we were really paying attention. We're in so much shock. Who could we talk to that could help explain this to us?  

And I know for a fact they're going to go find a social worker, a patient advocate. They're going to pull in maybe even a chaplain who could come in and just hear maybe the anxiety and the stress that they're going through, help them calm down, help them find their peaceful place, what brings them hope, what brings them comfort. And then, All right, now let's make a game plan. Let's get someone in here who can answer these questions for you so you feel more informed on the decisions that you need to make moving forward. 

Dean (28:53)
There's a piece too with, I go back to that room where we were given the information and just, again, the anger, the wanting to run, take the family, protect. But something I also just, if I had someone speaking into me at that point, somehow in our journey there… and after Tasha had answered Sydney's question about death… and just watching Sydney look to her mom in those moments and what our family was recognizing as what we did for that moment by moment.  

And somehow in that season, I can't even pinpoint when it was, but in our emptiness and in our hurt as we both, we couldn't fix each other. We're both empty vessels just trying to figure out what's going on and just trying to survive. We did have that conversation and I just... I'm so glad I was able to share with Tasha, like, I am not, you can make these decisions. I'm not, you know, we talked through them, but most of the time it was just that whatever happens, neither of us are at fault. We're doing the best we can with these decisions.

And it was falling on her, a lot of it. And so I'm glad we had that conversation. You know, I don't know what prompted that. I mean, I go back to when that happened, but it was pretty early. But we were able to have that conversation. And I think it's important, whether you're a single parent going through this or a couple or whatever, you can't beat yourself up. You know, you’ve just got to move forward and just do the best you can at that moment. 

Tasha (30:36)
Well, there are definitely… there's research happening because even the best physician doesn't have all of the answers. And so that is why people continue to study medicine. It's why science exists. It's why people look into things to make things better. So they are making very educated suggestions of what they have seen work for people in the past, but they don't know everything. They're not 100% accurate all of the time. They're doing the very best they know how to do.  

Dean did come to me at that time and he's like, You just understand things a little more than I do. I was a medical transcriptionist for a little while, so I did know a little bit of medical terminology. And he's like, You understand it a little more. As a mom, you're more in tune to what the kids need. That was just our role. And I just always had this sixth sense of knowing when my child needed an antibiotic for an ear infection or whatever that was. Or I learned how to listen to Carson's lungs because he had pneumonia a lot as a little boy. And I'm like, Sounds like someone's crinkling a plastic bag in his lungs. He's got pneumonia. We need to get him in. And he had pneumonia. All of those times I was correct.  

And so when Dean said that, he's like, I trust you with the decisions that need to be made. And at first, that can be a little overwhelming. But it was also empowering because this little mantra that I had used throughout our life through this journey, and I still use it today. And I love to share it with whomever I can, because I feel like it's freeing. And it's empowering. I made the best decisions I knew how to make with the information I had and understood at the time with my child's best interest in mind.

And when I filter every decision through that past decision, current decision, whatever that looks like, there's freedom in that because I know everything I did was for the best for my child. It was based on the information I had and understood at the time.  

Did I find out about different treatments after Sydney died? Yep. Did you sometimes go, Oh, what if we would have asked about this, that, or the other? I made the best decision I knew how to make with the information I had and understood at the time with my child's best interest in mind. And so that part has been super freeing. And if people who are listening to this today, if that's the only thing you walk away with, put that in your pocket because that keeps that decisional regret from knocking at your door.  

Or if it does, you just shove that at it and tell it to go away because, you know, any decision we make as a parent… I didn't let Carson watch Harry Potter when he was a certain age and now, I do. And he's like, Why didn't you? And I’m like, I don't know, I made the best decision I knew how to make with the information I had at the time with your best interest in mind. I mean it can be applied to everything. That has really been… we have to let parents know, like parents, You're not perfect. If the doctors don't know everything, you aren't expected to either. 

I think Brittany, you and I have had a conversation about that. The doctors know the most or the best about… they know a lot about medicine. They know the medicine really well, but we know our children really well. If we can work together as a team—they know the medicine, we know our child—and they also have our child's best interest in mind, then we're moving forward on the same page. 

Brittany (34:20)
And that's truly the culture and the heart of what patient family-centered care is. It's teaming up with the families, making sure that the family is a partner, that the staff, the clinicians are partnering with the families to be the best team for these kids. And I think that even goes a little bit further into families who are might be listening, you know, ask the questions in rounds. If they come to your door and say, do you want to participate in family-centered rounds? Say yes.

You don't have to be a clinician to be in these rounds. You just have to be the parent. You just have to be your child's voice to say, hey, last night was different or things seem to be better because when your perspective is brought into the medical picture, it can sometimes become clear. And that then equals better care, better outcomes. And it truly does make a difference in the family and the patient's quality of life. 

Dean (35:28)
That's where I recognized going back to when Tasha had that conversation later that night after we had her conversation with the oncologist, which didn't go well, but it's just... Finding, communicating and finding out that language that she spoke to our pediatrician. And it just was conversation that just took that ugliness out of it and how quickly it just got us back on track and how the focus just came in.  

And I just, I just remember we were all like treading water and it was just like, we were thrown a lifeboat and it's just like, okay, this is… tomorrow we can get on this. We're all on the same page.  

And that communication was so huge because Tasha advocated for herself and for my daughter and for our family and said, we might as well just go home if we don't get this, you know? And so again, like going back to me, I probably would have gone home. I don't know, who knows what I would have done if I would have been a single dad there with my kid, but it's just, but the thing is, is it just took words. 

Tasha (36:35) 
It's like he represented our enemy because he was representing cancer to us, our oncologist. And what's the saying? The enemy of your enemy is your friend. And so the enemy of both of us was cancer. And then, you know, we became friends. Love him to this day. We stay in touch and he's family to us. 

Dean (36:59)
Well, that's what I share a lot too is just how much I love the man and just realizing and going back that he hated cancer. And that's how I see him. And that he has devoted his whole career, his life, you know, his family has gone without him because he's made that choice in his life. I'm going to beat this. I'm going to spend my life. And I respect him so much for that. As a man, as I sat in there and I remember, I'm like, I'm going to elbow him in the face. So most dads, we kind of just, we don't know what to do, you know, beat up the bad guy. There's no bad guy. So it was just really cool to, you know, kind of make that shift. 

Tekeima (37:46)
Having this deep knowing of your child and your family, it wasn't a challenge to the health care system. What I'm hearing everyone say is that it was a vital part of shaping the best plan of care possible. And that is essential when you lead with love and you're advocating for your child.  

Still, sometimes speaking up, even when it comes from a place of love, isn't always easily or readily received. Yet you did what was necessary, even if it took you out of your comfort zone at points in time. Were there ever moments when you worried about being seen as difficult or a complaining person while trying to advocate for your child or yourself? And if so, how did you find your way through those feelings? 

Tasha (38:42)
Yeah, definitely. We had one specific instance when Sydney was in treatment and we had come back for a scheduled follow-up. It was, I don't know, maybe a month and a half or so after we had finished her radiation, her six weeks of radiation. And we did a scan. And when they compared the before radiation scan to this time, it looked like the tumor had grown. And so they were ready to take her off of the protocol. It was no longer fitting inside the parameters of that. And they were going to send us home on hospice care because it looked like the tumor had progressed.  

Something in me just that didn't sit well with, I mean, obviously it's not going to sit well hearing that news at all, but something didn't add up to me. And so I thought about it for a little while and finally had a conversation with our neuro-oncologist. And I said, I feel like we didn't have fair parameters on those two tests. I felt like one was done with steroids. And then this one was done without. And we're far enough out post-radiation that we could still have some residual swelling in the tissue and the brain. If I'm reading Google correctly. (laughter) Dr. Google.  

And so there was a little back and forth there. Oh, I don't think that would be the case. And I'm like, Well, I would really like to, you know, how can we have a conversation? Who do we discuss this with? Because it feels to me that the fair and right proper thing to do would be put her back on steroids and then do a scan and then take our results from there with the same, all of the same things in place.  

And so they had a conversation with whomever that included and decided, Okay, we'll let you go back, stay on the medicine for one more month with a low dose steroid. We'll do another scan in a month and see where we're at. And when we came back for that scan. There was more necrosis, there was more dead tissue, and everything had shrunk a little bit from that previous scan.  

So the call that I asked for and requested looked like it was the right call, but it wasn't comfortable to push back, especially when I kind of got a little pushback at my initial request because they just thought, Oh, she's just not ready to accept that this is the end of our trial protocol and they're going home on hospice.

And that really wasn't what it was. It was, Let's just make sure. That's all I want. I just want to make sure that with all the same things in place, we're not comparing apples to oranges. We're comparing apples to apples. And it was the right call to make. Sydney was able to be on that medication for a little longer. Maybe we had her for who knows how much longer… we had her for that time frame. And it felt like a win. It felt like they respected me and my voice and they believed me. And I respected them for hearing me, for validating that, for saying, You know what, that's possible. So let's go. It's not going to hurt anything at this point to go ahead and move forward with that. And let's see what those results might be.

So it was hard. I think, yes, I thought, Maybe people won't like me. I often joke. I get to sit on the ethics committee at that hospital, and I'm the only parent on that committee. And I get to be that voice because sometimes I hear the word noncompliant, and I'm like, You know what? I just want to reframe what noncompliant really, what that might be, what it looks like to you. What is on the other side is a mother or a father who's advocating for their child. So sometimes advocacy looks like noncompliance in certain settings.  

And so, yeah, I thought there might be some people that thought that about me, but I didn't care anymore because it wasn't about them. I wasn't going home to live their final days with them. I was making decisions for my child. And so I would really encourage people who are listening today to take that label off the table. The label is you are mother, father, caregiver. That's the greatest title you can have. That's the greatest label in that situation. And it really doesn't matter. You're not here to not hurt medical staff's feelings. We can be respectful. We can talk to them kindly and request and advocate for our children. And it doesn't have to be one or the other. 

Dean (43:42)
And from that, you know, her doing that for families that are in the... day by day, moment by moment, looking for good days. That gave us a great day. 

Tasha (43:55)
Gave us a great day. 

Dean (43:56) 
Sydney, I mean, like I said, it's just… I remember her coming out and dancing around, you know, and woohoo! And it gave us a great day. You know, and when you're living day by day, it just, it's huge from just speaking up. 

Tasha (44:12) 
It may be… even if it was one extra day we got out of it. 

Dean (44:16)
Absolutely. That's everything we’re looking for. 

Tekeima (44:21) 
Through it all, it is just so evident that you helped shape Sydney's health care journey, which contributed to her quality of life. That is such a great testament to your unwavering commitment to Sydney's well-being. Nothing was in vain. Your efforts and advocacy translated into excellent care. And I also imagine that it revealed to Sydney how special and loved she was.  

Dean, you spoke about the deep trust you placed in your wife as you both sought what was best for Sydney. I want to highlight how courage looks different for each of us. Tasha had the courage to press, and you had the courage to lean in and trust your wife. That powerful mantra, Tasha, was a steady message that grounded you both through times of uncertainty. Together, your hard work and your heart, H-E-A-R-T, work became a part of a sacred journey, the work of love, courage, and steadfast care. Are there other things that you haven't mentioned that aided you in asking questions and expressing different perspectives with the treatment team? 

Tasha (45:43) 
I think that we worked as a family unit and it was always the intention of what was best for our family. And I think if you have that mindset, maybe it's just you and your child and that's family, or you and your grandchild. You're the caregiver of this person. That's your family. And moving forward with what is best as a unit, there's just something that's a little unstoppable about that, right?  

When you have your people, whatever that looks like, maybe they're blood relatives, maybe they're your best lifelong friends that are in your corner. When you have that support. There's just absolutely no reason to never ask. And I think, Brittany, you and I have talked about this before. What if I wouldn't have asked the doctor, Hey, could we have another month on steroids before we do this, another MRI? What if I hadn't asked that, but it was in the back of my head? What kind of regret would I have lived with for the rest of my life because I didn't ask?  

And so, I really truly at the end of the day, even if I was told no, and there were times on the hospice journey where I heard of this, that or the other, that some people were doing, sent scans, did whatever. And the answer was no. But I knew at the end of the day, I'd asked the question and I had exhausted every effort and resource to see what was potentially available for my child. And so I think just... for your own peace of mind, ask the question and see what might be possible, even if the answer is no. 

Dean (47:35) 
I remember even Sydney making the choice to go home. What time period was that? 

Tasha (47:42) 
That was the hospice prognosis. It was May of 2009. 

Dean (47:48) 
Were we here? 

Tasha (47:50) 
We came for a regularly scheduled follow-up scan. We knew something was a little off, couldn't put our finger on it, and that's where it showed that it had spread from her thalamus to her brainstem. They offered a phase 1 trial study. They were very honest with us and said, This isn't going to cure her. This is more for our research purposes.

That’s where I said, Sydney, this is available. You'd have to stay here. Or we can go home, leave it in God's hands, keep you as comfortable as possible. Do the things you're wanting to do. Or we could stay here and we could do this. And she said she wanted to go home. So she was a part of that decision. 

Dean and Tasha (48:29) 
Her and her 500 stuffed animals. Her and her 500 stuffed animals. (laughter) 

Brittany (48:34) 
So I know that the two of you are very active as volunteers and are able to give back to other families going through similar journeys by being a mentor. You also help educate staff on how to best deliver difficult news. You help to encourage staff and families alike.  

I would love... If you could provide some feedback, some perspective to others about what that feels like to you today after going through all that you guys have been through. And for some, that can seem very daunting to come back and walk this journey again and again in all of these ways that you're choosing to do. But I would love for you to discuss a little bit about what that means to you now? 

Tasha (49:23) 
When I was 19 years old, I was in a car accident. I was the driver and my best friend was killed. And I didn't know anybody on the planet who had gone through anything like that before. And there was no social media. I couldn't look up, you know, accounts of people sharing information or support groups or anything like that. And it was a very lonely time. And I did not grieve in healthy ways through that at the age of 19… blaming myself and all of the different things. 

What my purpose and mission is now is to be what I wish I had. I wish I could go back. I have had the opportunity to… God has helped me cross paths with people who literally walked through similar situations as that, that I've gotten to walk alongside in that specific… they were driving, their friend was killed. Here they are with this guilt walking through this for the rest of their lives.  

And so I can see, I kind of saw from that, how healing that is to be able to take this very broken thing in your life, the thing that scarred you the deepest, and to find beauty in that somehow by helping heal someone else. Anytime you can bring comfort to someone else, it helps heal you.  

And so now in this stage of life, one of my favorite Bible verses is 2 Corinthians 1:4, and it says, He comforts us in all of our afflictions so that we can comfort others with any affliction, or through any affliction, with the comfort we had received. I’m paraphrasing.  

But essentially, that word affliction means he comforts us in all of our afflictions so that we can help them in any affliction. It doesn't even have to be the same thing that they went through. But to have that very specific and unique perspective in that shared kind of experience…  

There is something about living in the so that. I was comforted so that I can comfort others. And so... I'm very driven and very motivated to go back and help people and be what I wish I would have had in those moments. I wish there would have been someone like me meeting me at the door when I walked through the doors of the hospital. I wish I would have had somebody say, Hey, speak up. You can ask questions. You can advocate for your child. Hey, there's this quiet space over here if you need this. There's a chaplain over here if that's what's necessary. Hey, there are some mentors if you would like that. 

I wish I would have had that, so I now come back to be that for other people. There is something just very healing… when I was able to comfort a woman at a Days of Remembrance event who we didn't speak the same language. I saw her crying and I knew why she was crying and I didn't have words of comfort, so I just went and hugged her and I cried for her pain not just mine. And there was something that healed in my heart when my heart broke for her pain.  

I think that we can look for a why for the rest of our life and never find it. I think there are a lot of bitter people in the world right now who have just searched for a why that they will never, ever find. And it is this endless quest to find an answer and a resolution for why this bad thing happened in their life. And you can't do it. It's not there. You can't tie it all up with a pretty bow and make it all make sense. But if I look for purpose, I will find that every single time. All you have to do is look up and be like, Oh, I can help somebody over there. I'm in pain today. That person very well could be in pain. I don't know their story. How can I help them today? Can I carry their groceries out? Can I ask them, oh, can you reach that on that top shelf? Can I look up and smile at them and say, how are you doing? Are you having a good day?  

It can be the smallest things. Or it can be world-changing things. And for us, we've had this amazing opportunity to do things like this, like this podcast, to come back to our hospital and literally change policy and literally change the landscape of what end-of-life care and patient family-centered care looks like because we are being able to come back and offer our experiences. And every time we get to do it, we heal a little more. I won't say we heal all the way because I don't think that happens till I'm in heaven. But we're on the healthy side of healing. And a little piece gets healed a little more each time we're able to give back in that way.