Paula

Transcript:

Joel

Hi, I'm Joel Alsup and this is “St. Jude Storied Lives.” I work at ALSAC, which is the fundraising and awareness organization for St. Jude Children's Research Hospital. And I'm lucky enough that it's my job to get to know some of the patients and families of St. Jude and share their stories. Sharing their stories is especially important to me because I was a patient too, when I was a kid. So I know what it's like.

Well, now I’m a lot older, and I'm a parent, and these days when I meet the patients and their families, it's really the parents I identify with. They feel a lot of emotions. Some are in shock, some are full of joy and some are grieving. Today, I want you to meet Paula. Now, she knows all about those feelings of St. Jude parents because she's felt them all herself.

Paula

I think that it's hard to find the blessings in a journey of losing a child. And I wholeheartedly believe that you have to look for those blessings because they can be missed. And so that's what I try to do each and every day, is to look for those blessings, and it’s the patient families that we get to work with, that my team works with, that is the blessing to me every day.

Joel

Paula’s daughter Carson was a patient at St. Jude, and she unfortunately passed away. But the amazing thing about Paula is that she didn't stop after Carson had passed away. She came to work raising funds and awareness for St. Jude because she knew there was more she could do for Carson's legacy. Like we’ve said before, St. Jude is not an ending place. Even in grief, there’s more to say, and there's more to experience for a St. Jude family.

And that's what this podcast is about. It’s that life continues for patients and their families after treatment. How new networks of support rally around them to keep their story moving forward. That’s why Paula is a perfect person for you to meet today. She knows dozens and dozens of patient families through her work advocating on their behalf. And it's their stories that keep her coming back every day. But years ago, long before Carson was a patient, she had a different thought about St. Jude.

Paula

The most wonderful place you never want to have to go, is how my husband and I would describe St. Jude. We had lived here all of our married life, driven by St. Jude to go to games or cross the bridge, to go home to family, and we would drive by and say, Oh, we're so glad that St. Jude is here in Memphis, but we don't know anybody that goes there. I wonder who goes there? And then one day all of a sudden, we were there. We were the family that was walking through the door.

And now we know lots of people that walk through the front door for the first time. Too many people, unfortunately, that have to. But yes, that first day I'm thankful that we were local, that we lived in a suburb of Memphis, I’m thankful that St. Jude was in our back door basically, and that it was a place that we brought Carson, that we are so thankful – that we never wanted to bring a child here, but there is no doubt in our mind that without St. Jude Children's Research Hospital, we wouldn't have had 16 months of Carson's life before it ended. Way too short.

Joel

And take us back to that. What were some of the signs that something was up with Carson?

Paula

She had a swelling, what we thought was a swelling above her knee, and she had been complaining about that. She did everything sports wise and climbing trees and she was trying to keep up with an older brother and sister who played every sport known to man. And she was in a little coed basketball team at the YMCA.

She was in second grade and we just assumed that it was a knee injury from that or hip-hop because she didn't want anything to do with ballet because that was too slow. We needed to be in hip-hop. So that's what she did. And so we had had her to the orthopedic doctor and he said, Kids this age at seven do not have problems with their knees, like older people like we have.

And so, he just did an X-ray and said he didn't see anything. So just put her on ibuprofen around the clock every 4 hours or whatever, and it'll get better. And two weeks later, it wasn’t any better, in fact, then I could see swelling above her knee and she was just complaining all the time and limping.

And literally we thought that she just wanted a knee brace because her older brother was in a brace and so was her sister from injuries and thought, Well, that's cool. You know, she'd want a knee brace too.

But unfortunately, that's not what it was. He saw something on the next X-ray that two weeks later and sent across town for an MRI that showed osteosarcoma, which is a bone cancer.

Joel

Yeah. And with Carson’s. I know, I was fortunate enough I had the same type of cancer as her, it was just a stroke of luck. The tumor broke a bone in my arm before it had spread beyond that, I know with Carson's it was a little bit different.

Paula

So, when we came in, it had already metastasized in both lungs. So, we knew that we were in for a huge journey with Carson from day one.

Joel

And what's always amazed me about you is, you know, I met you guys probably not too far into treatment. I still vividly remember meeting you on the second floor of the patient care center and Carson’s beautiful smile.

But that was a thing in the midst of all this, in the midst of what you knew was going to be, that was tough news. You guys still smiled and handled it well.

Paula

We did. It is so hard to describe, how can you be at a place where you're receiving chemo and bad news and scans that can still make you laugh and smile and enjoy life? But we really did. Even those inpatient days when she was so sick with the chemo's and there were lots of smiles and things to do and family around us and family of our care staff, our doctors and our nurses, and literally the housekeeping staff that came into the rooms.

Everyone knew Carson and would draw “happies” on her inpatient whiteboard. And so many things that you couldn't even begin to describe them all.

But I do want to go back. I remember that day well when Carson met you, and I will just never forget the questions she had after meeting you. Tell me again, Mommy, what does he have? And he doesn't have an arm. And I said, Well, he has the same thing that you have, osteosarcoma. And she said, Well, he does really good.

And I think that speaks a lot for kids at the age of seven, that she knew that you looked happy and you were learning to live with one arm. And she said even though hers was above her knee, she would often refer back to that to say, Well, Joel only has one arm and he looks like he's having a good time, so I might just have one leg one day. And that was always just such a bright spot.

Joel

Oh, that means the world to me. And because she was the same age, I was the exact same age. I was seven when I went through my treatment as well. And just, you know, it's weird to say, but I'm glad it happened to me then because I think kids handle it so much better. How did how did Carson do in handling it all?

Paula

She was very matter of fact. You know, I think that very first day that they used the word cancer, I don't think she knew what that meant. In her mind, she knew older people had cancer. You know, she had met through church and things like that. I do remember very early on, just within a couple of days of diagnosis, she said, Does that mean I'm going to die?

So she knew the ramifications of that. But, I don't think she really knew what cancer was. She had no idea that, you know, there would be treatment and surgeries upcoming. And I do think that she took all that and internalized it, actually, when we first started and kept a lot of it inside. And talking about our family at St. Jude, our care staff, I mean, who knew that we would have a psychologist the day we walked in the door? And without her, with the psychology, with her meeting with Carson, I mean, that helped her open up about what she was experiencing.

And I think that was part of what made Carson happy, is that she knew that she could freely share what she was scared about with her care team and then with us because of those psychology appointments that we had, all because of St Jude. And I think that was a key part of treating the entire family and all of Carson, not just her tumor.

Joel

Yeah, absolutely. And you mentioned that there, the entire family, that was actually what I was going to ask you about next. Like Carson, I have a brother and sister. How did brother and sister handle all this? What was happening with Carson.

Paula

Boy, that’s tough.

Joel

Yeah.

Paula

So, her older sister was off at college, her first year out of state and, you can imagine, between a seven year old and one going off to college, the age difference. So, Carson had two mamas. So, it was very difficult on her. We had great friend support, church group would always make sure that she got here, her older sister got here any time she could. Every weekend. Carson's older sister wanted to drop out of school for a year. Carson said No, Sissy, she always called her Sissy. No Sissy, you'll stay. And so, she stayed in school. There again, St. Jude helped us get her counseling there in that state that they felt like would be good support system for her, both on campus and off.

And her younger brother, who she lovingly called Buddy, would come up here many times as well. As many times as we could, we would get the family together and come and play and just do normal things. Legos and Nerf gun wars. She loved that with her brother. But they're doing well. And still highly involved at St. Jude through fundraising, which I'm so proud to see.

Joel

That is amazing. And that's what amazes me. I mean, everyone I meet getting the interviews or through video or through this. Like I'm just astounded by their strength, by their courage all the time. I’m especially astounded by your strength and courage.

Why did you decide that coming back to work for the fundraising and awareness organization for St. Jude was what you wanted to do even though the outcome was not what you had hoped for?

Paula

I get that question asked a lot, actually, and to me it's an easy answer because there's work still to be done. We're doing great things at St. Jude Children's Research Hospital. When you say now we have an 80% survival rate, you know, four patients are going to survive. But when your child is the one that didn't, then those numbers don't look so good.

And that's why I'm here, because I've always said that our family would support St. Jude and tell Carson's story. So, everyone's aware because every single child matters. The 20% matter. And across the globe, when you look at the percentages being reversed, that four patients don't make it, and one survive. Why is that based on where you live or your status?

So, I think that being here helps my family and I personally in our grief journey always sharing Carson's legacy. But I think it's so important to get that message out that there's work to be done and there will always be work to be done until we're at 100% survival rate for all of these terrible childhood cancers.

Joel

Absolutely. I agree wholeheartedly on that. And can you tell us, tell everybody else, I know what you do, but tell everybody else what you do here at ALSAC.

Paula

I am senior director of Patient Family Outreach, and I have the honor and privilege every single day of working with patient families. So, part of my team helps patient families that want to continue to support St. Jude, whether they're bereaved like my own family or they're in remission, they're finished with their journey and they are now survivors. And some of them have even grown up now and had kids of their own.

They all have different ways of how they want to stay connected to the hospital, so my team gets to help them do that and support them. The other part of my team helps with patient families that are in the journey to say, we'd love to have pictures and stories and hear their journeys and share those with the rest of the world because everybody's journey is important.

Joel

Absolutely. I'm always fascinated by your perspective. What perspective do you have when you're driving on to campus? You know, four or five days a week. What goes through your mind as you come to those St. Jude gates?

Paula

Thank you. I think that's the biggest thing is thank you, because we live in the same home that we lived in when Carson was still with us. So, I take that same journey every single day, same roads, and I can just hear and see Carson in the back seat and I just know the joy that she had every day coming through the gate.

And my husband reminds me on a daily basis, remember to smile, because that's what Carson loved about you. Carson always made me smile and laugh. And I always think about that when I come through the gate. That she was happy to be here. And she's still here.

Joel

She is. She definitely is. I think of that smile all the time, too. And what does it mean to you now too, once you're through that gate and you get to see the smiles of the patients who are here today who have grown up, what does that mean for you?

Paula

That's my blessing. That's my blessing every day to walk with a family in their journey, wherever it may be. You know, if they're bereaved, like my own family or someone reaches out because they just heard the news for the first time that their child has cancer or that we're taking their picture in the studio. That's my blessing because I think that it's hard to find the blessings in a journey of losing a child.

And I wholeheartedly believe that you have to look for those blessings because they can be missed. And so that's what I try to do each and every day, is to look for those blessings. It’s the patient families that we get to work with, that my team works with, that is the blessing to me every day.

Joel

Let’s flash forward a little bit too. Hopefully, I'm assuming and hoping you're planning on retiring here. What do you hope as you’re finishing up your time, your work at ALSAC St. Jude, that people will think about you and remember about you?

Paula

Well, first and foremost, I hope they don't forget Carson, that her life mattered. And as far as I'm concerned, for me, I hope that they remember that I always put patient families first, no matter what the circumstances. That I always did, what was right for patient families to support them and to help share their story. And that I provided what they needed at that moment. And if that were to happen, I think that's a pretty good thing to remember.

Joel

What does St. Jude mean to you? And not only to you, but to the entire world? What does that encompass? The mission that we have here.

Paula

I think to the entire world, St. Jude means cures. In my heart of hearts, I know that if there's going to be a cure found, I just think it's going to be on this campus. Now, yes, it may be in collaboration with another institute or another global partner, but I think it's going to be because of the initiatives that were started here at St. Jude Children's Research Hospital.

And for that, that gives us hope. It gives us hope for our grandkids and our grandkids’ grandkids that one day maybe there's not the word osteosarcoma anymore or leukemia, and all the other cancers, that it's just a thing of the past. And I think that that's what St. Jude brings to the entire world, not just Memphis, not just the United States, that it's hope for everyone, everywhere and every child.

Joel

Paula, thank you so much for sharing your grace and your time and your perspective with us. We truly, truly appreciate it. And just know we'll always be thinking about Carson and that's why we do what we do.

Paula

Thank you, Joel.

Joel

So, what's especially amazing about Paula is that she drives onto the St. Jude campus every single day with a smile on her face and determination in her heart. And that's despite her loss. That's because of the work she knows there's still yet to be done. She has hope, and her hope comes from the belief that St. Jude researchers will keep working into the future to increase survival rates. And that's work that can only continue with the support of donors like you. You can give to St. Jude online at stjude.org or click the link in the episode description. Together we’ll make cures possible for every child, everywhere.

This podcast is a production of ALSAC, the fundraising and awareness organization for St Jude Children's Research Hospital. It's recorded by Andres Garcia and Nathan Black. It's produced by Geoffrey Redick. It's edited by Grace Korzekwa Evans. The music production is by Kazimir Boyle, and Louis Graham is the executive producer. I'm Joel Alsup. Thanks for listening and join us next time.

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