Inspiration in the Oven: Gretchen Witt's Quest to Cure Kids' Cancer

This episode features an inspiring conversation with Gretchen Witt, who shares her profoundly personal journey through pediatric cancer with her son, Liam, and how it led to the founding of Cookies for Kids' Cancer. Faced with the dire need for funding in pediatric cancer research, Gretchen turned her pain into purpose, initiating a massive cookie bake sale that evolved into a year-round national organization, raising millions for research and treatment options. The episode delves into the challenges and triumphs of navigating pediatric cancer, the nuances of different types, and the importance of advocacy and grassroots involvement. Gretchen's story illustrates the power of community, determination, and love in the fight against pediatric cancer.

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00:00 Welcome and Personal Update: Awaiting a New Arrival

01:55 Introducing Gretchen Witt: A Mother's Fight Against Pediatric Cancer

04:24 Gretchen's Story: The Diagnosis That Changed Everything

15:28 Navigating the Healthcare System: Seeking the Best Care for Liam

26:04 Advocacy and Communication: Protecting Childhood Amidst Cancer

32:30 The Rollercoaster of Cancer Treatment: Hope, Grat

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Chapters

• 9:00 [Ad] Brilliant Beaver Guidebook - Audio Version
• 9:48 (Cont.) Inspiration in the Oven: Gretchen Witt's Quest to Cure Kids' Cancer

Transcript

Hey friend, thanks for joining me today. I'm going to try and keep this intro short because. I have a longer episode for you today, but it is a really inspiring listen.  

I have, however, had so many thoughts on the personal front of topics and ideas that I really want to share with you, but that's going to have to be saved for another day. I I'm thinking that in the coming months, I'm just going to have to record a bunch of solo episodes because I've had like a slew of epiphanies.

Recently, and I'm pretty sure it's because I have just been all over the place with my emotions the last few weeks As we await the pending arrival of our daughter. So if you're new here, the cliff notes version is that my husband and I struggled with infertility for many years, suffered three second trimester losses, have two sons, Age 6 and 4 born via IVF, but that came with a whole slew of health issues for me, traumatic pregnancies and preterm birth, preterm labor, all the things.

And now years later, we have been fortunate enough to pursue a surrogacy journey and our gestational carrier who lives in Texas. We are in Chicago. Has done a wonderful job carrying our baby, and she is currently 38 weeks pregnant and we are just on pins and needles waiting for her arrival.

My longest pregnancy was my youngest son, who was born on a plan C section at 37 weeks and one day. So the fact that we are over 38 weeks now, uh, is just wild to me. I feel like. At any moment, she could be here, but also likely she will go up to the due date. As our surrogate has done in her last three pregnancies, um,  stranger things have happened. So we are here waiting and it is, it is just my mind's all over the place. So stay tuned because I have some episodes in the works for you.

So on today's episode, I'm welcoming on Gretchen Witt. For over 20 years, she has made her professional home in public relations, working with a broad range of companies, advising them on how to effectively communicate their message. But in 2007, Gretchen's life took on a new challenge when her two and a half year old son, Liam, was diagnosed with pediatric cancer, the number one disease killer of all children in the United States.

Liam's indomitable spirit inspired her to raise money for a promising new treatment in need of funding. Committed to doing all she could to help make the treatment become a reality, Gretchen hatched a plan to bake and sell 96, 000 cookies with a larger than life holiday bake a thon. Against all odds of what should be possible, every cookie sold in a matter of days, and more than 420, 000 was raised.

It was clear that inviting people to be good cookies was a sweet way to get people involved in the bitter topic of pediatric cancer. In September of 2008, Cookies for Kids Cancer launched as a year round national organization.

As the organization grows, Gretchen's story of love and determination to impact change inspires people across the country. She has been interviewed on the Today Show and profiled in the Wall Street Journal, as well as CNN, Good Morning America, Oprah Magazine, and the Huffington Post. Recognized as one of Woman's Day magazine's 50 women who are changing the world and named the national honoree in L'Oreal's Women of Worth Awards, as well as several other national awards.

In 2011, Gretchen added author to her list of accomplishments with the release of the Cookies for Kids Cancer Best Bake Sale Cookbook, she is described as inspirational, offering a message of strength and determination. That is perfect for so many people. I could not agree more with that statement and it was an honor to have a conversation with her. Take a listen. 

Hi Gretchen, it's such a pleasure to have you join me on the show today. From one mom to another, I'm really in awe of your strength and just the work you've done in honor of your son Liam. So I'd love for you to share your story with my listeners and kind of walk us through, The why behind the nonprofit you started, Cookies for Kids Cancer. And then we can  chat about your journey along the way. 

Sounds good. well, first of all, thank you so much. I mean, the number one way to make a difference is to raise awareness. So being able to share the story is just such a gift. So thank you for being interested and thank you for allowing me to share the story. 

Absolutely.

So it all started, when my two and a half year old son went to the doctor for what was a well visit. And it was an appointment that I scheduled because I just felt, I had this instinct that there was something that wasn't right, but I couldn't put my finger on anything.

It's not like he had a fever of 107 or a bloody nose that wouldn't stop or like there was nothing like definitive. It's just was that that mom instinct that something is not right. So my son went to preschool. I picked him up. I took him to the pediatrician's office. I met with my favorite pediatrician in the practice, the one who had the most experience.

At the end of the visit, he handed me three prescriptions and he said, you know, let's, let's get, get them checked out, make sure everything's okay. Here's a prescription for a CBC, which is to test your blood. And then a chest x ray, make sure there was nothing going on, like maybe did he have a cold that was lingering, or some chest congestion, and then an abdominal ultrasound, because I said that he had really, he was always a picky eater, but he had been an even pickier eater. So he wanted me to just like, let's make sure that there's nothing going on in, in his abdomen area. But no, like, oh, this is terrible, like, go, go straight to the hospital. 

Yeah, nothing like alarming at this point in time. 

Yeah, and he just kind of handed him to me and I said, well, Oh gosh, you're like, how fast should I have these done? And he's like, you know, like you should get them done soon, but you don't have to go right now. And I got in my car and I put my son in his car seat. And I, for some reason just said to myself, you know what? We're just going to get these done as soon as we can. So I drove straight to the closest hospital and it happened to be the one where he was born and walked into the outpatient area, handed a receptionist the three prescriptions, and she said, well, you can get one of these done today, but the other two, you're going to have to schedule and it's going to take a while.

And I looked at her and she looked at me and her eyes locked and she grabbed my hand and she said, you know what, we're going to figure it out. You might be here for a while, but we will get these tests done today. 

Wow. 

Yeah. It was pretty amazing. It was like, it was like one of the first, so many,  times that my cross path was somebody who just showed me great empathy.

For which I will like forever be grateful for. So we had the test done. It did take hours. It was, I don't know, like nine o'clock that night. And I was called to a room, which is,  normally where the radiologists sit reading x rays and other scans. And it was late at night. So there was nobody in there.

But you could see the glow from all the monitors and somebody called me in and they handed me a phone and I'll never forget that the receiver was red. And I felt like, Oh yeah, cause this is like the bat phone kind of.  And I said, hello. And it was my son's pediatrician. He said, Gretchen, Liam has a large abdominal tumor.

We don't know what it is, but we're going to admit you tonight. So if he can get fluids and we will do some more testing tomorrow.  And I just remember thinking to myself, two things. One I was worried that I was going to fall down. So I was leaning on my son's stroller because he was in a stroller asleep. And then the second thing I thought to myself was. I had this just strong premonition that my life had just taken a turn. It was never going to be the same. 

Wow. That's, that's crazy. You think it's just like, like a mother's intuition or  just the feeling hit you all at once. I mean, it's, 

Well, I think, I mean, like, so as the journey progressed, and I found out that pediatric cancer is the number one disease killer of kids in the U. S. Kills more children than asthma, AIDS, MS, and MD combined.  And then also finding out that the cancers that kids get are totally different than the cancers adults get.

What I realized is that. The issue is, it's, this is a really difficult topic, cancer in general is a tough, tough topic, like nobody wants to just like, hey, let's talk about cancer, 

right, right, 

nobody, but when you then add children into the equation, People really don't want to talk about it. It's just like one of those things that we'd prefer to pretend doesn't exist.

It's hard. It's so hard to, to think about and it's just easier not to, I think, which isn't helpful because you just, you don't hear about it a lot.  Know, it's, it's a rough topic. 

No. Yeah. And you know, the thing is, if I had had any inclination earlier on, that Cancer was even a thing that I should have on my like, just like in the back of my head.

Yeah,

I probably would have pushed harder. When my son started having this kind of like, just like nothing, no smoking gun, but like odd things. 

Yeah, but no mom is thinking about that, right? Especially when you've got a two year old and you're still trying to really, you know, like they could say they have a tummy ache or whatever. And you're like, and I hear you, but like, maybe your gas, you know,  that would never be my first thought.  I think even if I, like you said, I think it'd be good maybe to have the knowledge in the back of my brain, but I think even then I still would not be remotely thinking that way. Yeah. At that moment. 

No, no, but like, look, if I could go back and talk to my, my former self before my son had this diagnosis, I would have pushed harder. For a CBC, which is a pretty easy thing to do much earlier in the game, because I think if he had had a CBC earlier, we would have had some inclination.

Now, I'm not sitting here blaming anybody. I'm not pointing the finger at anybody. Look, you know, like it, it's pediatric cancer overall is rare. And I'd be curious to know if you know anybody who has had a child with cancer because you like, it's not a common thing, but it's, you cannot deny the fact that it's the number one disease killer. So it's common enough that in my opinion, like it should be at least in the back of your head. 

Yeah, no, I agree. I mean, I think  if social media wasn't a thing, I would not know anyone  that has a child with pediatric cancer or would not know anything about it at all. But even that said, with the thousands of people I follow from like back in high school till now, One, maybe two parents I've seen go through this and that's out of thousands and thousands of people  but it happens  that's why I'm glad we're talking about it today too, because, parents should be aware of it,  it should be on your radar.

Like, it should be bursting on your radar. But if you've got.  My son had always been a picky eater. Always, always. And you know, so it was just like one of those things. But what I kept hearing is, well Gretchen, he's within the height and weight and developmentally, he's totally  like he's on a good track. So it's you as a new mom kind of thing. He's, it's not like he was too fat or too thin or, yeah, or too tall, 

which is so funny because those are like the three metrics that we like with infants and toddlers and going into preschool, you know, that's what you look at and you're like, Oh, okay, well, I guess we're good.

Yeah, whereas  I can see that  there were bread crumbs along the trail before he was diagnosed. But, you know, nobody was.  

Yeah. I mean, how could you? You don't, you don't know what you don't know. And,  yeah, everything in hindsight. Right. But, um, it is interesting because  CBC  seems relatively easy to do. And I'm just thinking of my own health too. And through infertility and all the different things, you can learn a lot from blood panels and things like that. So I'm like, why aren't  some of these things more, you know, Common in.

Exactly. 

Practice. Yeah. 

If he had had a CBC  six months earlier, or even a year earlier, we probably would have seen an increase in white blood cells. I don't know for sure if we had, but. Look, why not at least order one? You know, if you've got a mom who is coming in saying like,  there's just something that's not right.

Instead of saying, well, everything looks normal and everything looks fine. I think that the lesson that your listeners can take away is,  Nobody is going to be a stronger advocate for your child than you are, and I'm not telling anybody to panic and think that it could be cancer, but you know what, it could be, it could be, and so if you've got that mom's intuition or dad's intuition that something is just not quite right,  at least check off all the things that it might be in order to have the confidence that everything is okay.

Okay. Yeah, absolutely. I couldn't agree more.  You are the best advocate as a parent for your child and I've learned over the years too, in my own experiences that  and my doctors are pediatrician.

I love them. They're great. But that's not where it ends. You don't have to take what they say. They're great. Word for word, you can always get a second opinion. You can always ask more questions and you can always do more tests. If, like you said, if you feel that in your gut, because I've learned that, you do have to advocate for yourself and for your kids. Um, you can't just trust that someone else knows everything. 

Well, and then there's that whole, thing that happens, like, well, the doctor says, right, right. You're afraid to like push back against their doctor. And, and again, like, I'm not telling anybody to be antagonistic or  mean, or, you know, like argumentative, but you know, like nobody's going to advocate for you the way that you're going to advocate for yourself or your child or your loved one. Like it really doesn't matter who it is. 

Right. 

And you know, like, why not just like something as simple as a blood test. Go get it. Go get it. Just do it. 

I know. That's always blown my mind. Because again, I can only relate this to, most of my medical experiences have been within the, like, infertility world. And, some very common things can be prevented with Having a CBC done. Um, I'm just like things that come to mind are, you know, reoccurrent miscarriage or not being able to get pregnant. It could be as something as simple as like your thyroid or an auto immune disorder or something. And it's like, why, why did this person have to, you know, go through X amount of miscarriages or have to suffer for this long train to get pregnant when we really just could have pushed for the test. And so I think the more we talk about things like this, parents and women will know. Like just ask, just ask and advocate. So I think that's, yeah, that's great advice. 

Yeah.

So you're at the hospital with your son. So it's just you and your son at this point, right? When you're hearing this news and that he's going to have to spend the night, man, I mean, I know you said you could barely stand up. What, where do you go from here? And, you know, obviously, yeah, what happened next? I mean, he had to spend the night and Testing done the next day. 

So we were admitted.  I called my husband and it told him what was going on. And it was, it was interesting because we immediately did this divide and conquer, thing where my job was to take care of Liam and to make sure that Liam was okay.

His job was to put together.  A task force, of people who he knew and trusted and talked to them about, okay, this, what do we do? Because our immediate gut reaction was, we wanted to make sure that our son, was being treated at a place that were experts in whatever it was. Now, at that point, all I knew was he had a tumor.

I didn't know, you know, so then the next day we spent the night in the hospital.  The first of,  many nights for me that I slept in a chair. And then he had a test the next day and it was just, it was such a terrible, terrible story. But, um, we go in to have this scan done and  he is unconscious from anesthesia so that he could lay still.

The technician came in and said, Hey, you know, like we're going to do this test. We'll have the results fairly quickly. You can stay in here with him while the scan is taking place. And I was like, okay. it's either going to be this or it's going to be that and let's hope that it's not this kind of cancer.

Yeah. 

Because if it is, that's really bad. And I was like, oh, okay, great. 

Yeah. Wow. 

So, um, so they do the test. The person came out and I said, well, it was this, so it's the really bad kind of cancer. And I was like,  Oh, okay.  And talk about a smack in the face there,  just like that, huh? It was stunning. So then as my son is recovering from anesthesia and we're in this recovery area, I was on the phone with my husband saying like, this is what it is, he had already put together this group of people and they were, you know, they knew that it was going to be this or that kind of cancer and like, where do you go and what do you do?

So they already had narrowed down. a few hospitals that were on the list that you want to go to if you have this specific kind of cancer. And what we were really looking for is we wanted to go to the hospital that treated more cases of this kind of cancer than any other hospital out there.

Yeah. 

Because I had already been warned that it was really bad cancer. 

Right. So,  I told the doctor who had admitted us that we were.  At going to a different hospital and she turned and looked at me and she said, well, if that's the case, then there's nothing else for me to discuss with you. And she turned her back on me. 

Wow. 

Yeah. 

Wow. That is not, not the reaction, not what you want when you are just, Trying to wrap your head around that news.  No. 

Wow.  

No, that, that, that was not high up there on the list of, empathetic reactions. So. 

Yeah. If anything, it probably solidified that you should go somewhere else.  I mean, I know different situation, but yeah. 

And I think that, That one of the lessons later on that it taught me to ask and and what I always share with people, to ask a doctor after they've received a diagnosis, whether it's for them, whether it's for somebody they love, whether it's for their child, it doesn't matter who it is, whether it's for your pet, is not, can you treat this?

I think that we all have this gut reaction and we want to look at a doctor and say, can you fix this? Like just, yeah. You just want to know if your loved one's going to be okay. That's like, 

right. Like you want to know your loved one's going to be okay. You want to know if you're going to be okay or your loved one is going to be okay. You want to know that they can make it better. Right? Like that, that's all you want to do. And what I learned is not to ask the question of, can you fix this? But  have you fixed this? What have the results been? how many times, and when was the last time you treated a diagnosis just like this?

Those are really smart questions and important for anyone listening to hear because  like you said, the gut is to just be like, Oh my gosh, help. Or  can you? Those are smart specific questions. Yeah. 

Right. Right. Cause it's like, you have this hot potato and you like, you just  better make it better. And you need to take a deep breath and take a step back and, and look at somebody and not say, can you, but have you? And you know, and if the answer is yes, okay, well then when was the last time ? Yeah. Zach's diagnosis. And, and what were the results? Because if, you know, like, if you hear anything that makes you suspect, then you should look around.

Yeah, absolutely. And I think it probably helps too. I mean, not only to make sure you're getting the best care, but for you personally, to be able in a moment of like kind of shock and panic, to wrap your mind around what's going on even more, you know, get some real answers and expectations, at least from one person's point of view, you know, what they've experienced.

I know for me, more information usually kind of calms any anxiety or, you know, anxiety. Or nerves or anything. So I think it's helpful just the more, you know, so asking those specific questions. I can see how that's super helpful and important. 

Yeah, definitely important for sure. 

Yeah. So you found a hospital and doctors that in a team that you felt comfortable with. 

So, yeah, we found the hospital, which is actually not too far away from where we were located. That,  treats more of this type of cancer than any other hospital in the United States. And knowing  that it was not going to be an easy journey. We wanted him to be at a place where the doctors and nurses treat this diagnosis so often that they, know what they're doing. They can do it with their eyes closed and that  it's not this oddity because the other thing that's happening is even in the 24 hours that I was at the Southern Hospital, I felt like I had a freak show of a child. And all of a sudden, like people were coming in and wanting to look at the kid who had, Stage four neuroblastoma and what does he look like and and asking me lots of questions and all I want to do is to protect my son and to make sure that he was going to be okay. And I, I felt, I felt like I was an animal in his zoo. 

And you want to feel comfort in that moment. I mean, you want,  you want, you don't want everyone's energy around you to match yours. You know, you want to feel that they are like the steady hand in the storm. Um, Yeah, 

right. Yeah. So then we traveled via ambulance. It was my very first ambulance ride. Not actually my second. I was in an accident when I was younger, but I wasn't. So, um, but my very first ambulance ride was a child. And we arrived at the hospital. and it was late. It was like after 11 o'clock at night. Um, And the head of the team that treats that specific kind of cancer was there waiting for us. It's like, it's going to be fine. We got it. And it was the first moment in probably 48 harrowing hours. Then I felt a little sense of calm. 

Wow, and I know you said  there's people along your journey that, you know, stood out. Like you said, the first person who just said, no,  we'll get this done. We'll take care of it. And now, you know, the doctor waiting for you. It's, it's, it's. What important moments and connections and people defined for sure. 

Yeah, it was crazy. And, you know, and then meanwhile, you know, it just solidified in my head that the life that I knew before he was diagnosed or before I got the news, it was, it was never going to be the same.

And while I, I knew it was never going to be the same. I hoped that it would have some semblance of what it was like before,  but I didn't know. And that's probably the hardest thing about dealing with a diagnosis, whether it's infertility or not. Like you, you want somebody to tell you, 

yes, absolutely. 

Or yes, we can get you, you know, you're going to get pregnant or, 

yeah.

You're like, this is going to be okay. And it's like, you just want somebody to tell you that. And nobody, nobody could tell me that. And so I just kind of, I learned really, really quickly. And this is probably another, great tidbit to share that I was either going to sink because I kept trying to swim against the current, or  

I was going to have to learn how to ride the wave so that I didn't sink and understand that everything was out of my control. And the only thing that I had control over were my thoughts and what was happening in the very immediate moment. But that was it. 

That's a really profound point and one that I absolutely relate to. And The fear of the unknown  is the biggest driving force of worry and anxiety and can cause you to sink. Like you said, if you let it take hold of you, I've experienced it. Yeah. Throughout infertility and,  my oldest son was born premature and like really premature 24 weeks and spent four months in the NICU and not knowing how that was all going to go.

I mean, I think when it's. It's different. I've experienced it, you know, with my own health and then with my child's health and it's different, but,  the same at the same time, you know, it's a lot easier. I feel like when it's not easier, it's different when it's on you and your health and you're like, You can go down a slippery slope and it's hard to stay positive, but I'm sure you can relate that when it's your child, you kind of just go into this like unconscious state of just writhing up like there's no option to sink.

And then you learn that you just, you can't, you have to go with the punches and roll with it and just pivot when needed and be there. For them, especially when you're, you know, a young child that you, you, that's all they have. They don't have a voice. They don't know what's going on. You are their advocate. You're their everything. So, I can see how that lesson found you immediately  in the sea of all of this. 

I would see parents that were struggling.  Look, I can't say that I, I got this right away. It took me a little bit of time.   And  you would see parents struggling, just like just really struggling.

And what I realized is that my most important role was to take care of my child and to not sit in the parent lounge, stressing with the other parents over what was going on. But I needed to keep my son in the, I needed to keep him engaged and active because it's the other thing is that a child picks up on what your feelings are. And I didn't want Liam to think that there was anything wrong with him. 

Right. 

I didn't want him to worry. My job was to do the worrying. His job was to be a child. Right. My job was to make sure that that I was taking care of everything that I could in keeping him as engaged as possible. And so all of a sudden I became mom, Dr.

Mom. Um, Playmate, you know, like, uh, class clown. Um, Yeah, like you're, you're every thing. And, and advocate. And probably, like, the biggest one is advocate. And than deciding like, how I wanted his class clown to be. treatment to go along. And when I say that, what I mean is like, I made a rule very early on that no doctor was allowed to talk about, or, or nurse for that matter, was allowed to talk about anything medical in front of Liam.

So I,  I would make all the doctors speak in pig Latin. Um, when they would walk in and they'd want to talk to me about something, and I would be, Ix nay ok tay.  I got to talk to them about, um, talk to them in Pig Latin because I, I didn't, I needed Liam to be Liam.  I didn't want Liam to be the patient. I wanted Liam to be a two and a half year old little boy. 

Yeah. Yeah. Which is so, so comforting and important for him in that time. And the fact that you, I love that you made that rule around the doctors, because I think a lot of people would be like you said before,  the doctor says, or this is what it is.

And I have to go with it, but you knew what was best for your son. And I think that's important for people listening to remember that like, again, you're the parent and you need to do what's best for your son. Don't be afraid to ask or tell people what you need .

Right. Right. And that, that's the thing. Like, you've gotta advocate.

Yeah. 

You've gotta advocate not only for yourself, but for your Yeah. Like whoever it is who's going through something and, and it's scary. It's unnerving. But it, it was the right, like you've gotta take charge and  you take on the role  when it's a child.

They take on the role of being in the general, right? There's a way this is going to go down. Yeah. And, and everybody who we came in contact with just inherently understood. And I also made sure, like, I would have these like quick little talks with people  before anything would happen. And, and part of the reason was when something was about to happen to my son, Like having to have a mold of his body made so that he could have a,  it's like a cast when you're getting radiation, because you have to stay perfectly still.

Well, I didn't want Liam to be hearing something for the first time when I was hearing it for the first time. So I would always take this approach of, okay, tell me what's about to happen. And I would have somebody explain it to me so that and I would do that alone so that then I could explain to Liam  okay, buddy, here's what we've got to do today. We're doing this because of this. 

It's really smart and it allows you to kind of process what's going on to  I'm just thinking for myself, I would be like, listening, but half listening because I'd be worried about what my child is feeling or understanding. So you're still then in that moment, you're not getting all the information you need. So I think that that's so smart. Yeah. 

Yeah. And then what it allowed me to have time to do is, like you said, I would process it. But then break it down on a level that he would understand. And like, there's another little tip that I learned early on a psychiatrist said to me that as adults, we tend to give too much information.

But when a child asks you a question, your job is to answer the immediate question. So for example, if the question was, why do we have to go to the hospital today? The answer is not, well because you have cancer and because you just did chemo last week and that means that you're about to have no white blood cells and when you have no white blood cells you could die because you don't have a immune system and like going into over splaining something.

Yeah. 

And instead I would say like, oh, hey buddy, the doctor just wants to see how many white blood cells you have. Okay, great. So I learned really early to answer just the immediate question, and to parse out the information in doses  that he could understand and that he needed to know.

That's really good advice. I think just in general, um, when it comes to your children and explaining things, whether it's something serious or, you know, just a regular old doctor visit. I mean, I think the less is more. And, you know, then as they get older, you get to the ages where then they're like, well, why or why, what are white blood cells? You know?

 And my son was known as the Y kid. The kid asks a gazillion questions. But you can, you know, like when the white blood cell question, for example, like, why? Well, because this is what white blood cells do. Well, why do we need to look?

Well, because remember that medicine you got last week? Yeah. Well, that one tends to, Make you have less white blood cells and white blood cells are really important. Yeah. I can't make it a lesson as opposed to  a scary thing. 

And then I feel like you're, you're letting them like guide the conversation.

Like it's like, they're in control. Like, what more do you want to know?  Instead of just, word bombing it all over them and  scaring them. Yeah. 

, because your job as a parent is to be scared. Their job is not to be scared. 

Right. 

Their job is to be a kid. So

I love that. Thank you for mentioning that. I think that's helpful. I can only assume that there was so much that happened in, the timeframe of your son being sick and, and maybe not being so sick. I can only guess that maybe  it was a bit of a rollercoaster ride. Do you want to  kind of give me like,  a high level  overview of what that looked like for you and your family? 

Absolutely. So the bottom line is  he was in treatment for four years.  It was, it was long, it was a long  time, um, at the point that he was cancer free. The first time I was so grateful and so feeling like I was on top of the world. Like literally I could climb any mountain, I could lift up a car, like I thought I could do anything. I was so grateful that,  I wanted to give back and I wanted to express my gratitude by helping other kids.

And the reason why that's important is because We tend to, or at least I, before I had a child with cancer, I thought like you get cancer and then it goes into remission and then you're fine. 

Yeah. 

At least you hoped it, that's the case. Well, what I found out is that there's some cancers that you never go into remission. You have something that's called NED, but it doesn't go into remission. 

Oh, I did not know this. And I'm sure there's people listening who didn't know any of this. I thought the same. I thought it was, you have cancer, you go on remission, and then you move on. like, yeah, 

right. Yeah, exactly. So NED stands for no evidence of disease. So there are some cancers where we can either see it or  we can't, but they don't ever necessarily go into remission. 

Okay. 

So he achieved, being NED. There are quite a few kids with his kind of cancer that never achieve that status of being NED. I knew that. I was so grateful that my golden child, had achieved that monumental status that I wanted to help other kids.

So the holidays were coming up, I wanted to help raise money for a treatment that I knew was in development. I didn't want to climb Mount Everest. I didn't want to run a marathon. I didn't have time. Like it had to be something that was fairly and I wanted something that tied into the holidays. At the time we were living in New York City because that was where the hospital was, where he was being treated. Car washes in New York City don't really do that well. And I wanted to raise a lot of money, like as much as I possibly could. And so I'm like thinking about all these things and what is the answer?

What, what is it that I could possibly do? And I just read a story in Oprah magazine saying, do what you know and do what you love. And I knew a lot of people who were pastry chefs and chefs. My son loved to help me in the kitchen Absolutely love to help me in the kitchen. Yeah. The holidays are coming up.

It's that time when everybody does the mad dash, trying to find a gift that they can give, that they not only feel good about giving their money towards, like, not a waste of their money, but also they feel like the recipient would enjoy receiving. And who doesn't love, Fresh baked cookies at the holiday.

Yeah. And who wouldn't love giving their money towards a cause that had meaning. And so that's when I came up with the idea that I was gonna have a big cookie, Make-a-Thon during the holiday season. And so then the next question was, well, how many cookies should I make? Yeah. And at the time I knew about 80 families who had a child. that was going through cancer treatment. And at the hospital where my son was being treated, they treat all different kinds of pediatric cancers, which actually sidebar ,  you're going to probably respond the way that I did.  When I tell you that the cancers that kids get are totally different than the cancers adults get. And there are dozens of kinds of pediatric cancers. I had no idea. 

I had no idea. No, that's wild. 

Like I had no idea. I thought the kids Got adult cancers, but just like a junior version of it. 

Yeah. That's exactly what I thought. Yeah.

 But you're a mom. 

Yeah. No idea. 

I know. Right? Like, we just like, no idea. No idea. So anyway,  there's 80 families. I had read a story that the average Girl Scout sells a hundred boxes of cookies. Okay. So 80 families times a hundred is 8, 000. Okay. Okay. 8, 000 dozen cookies. Okay. is 96, 000 cookies. All right, I'm going to make 96, 000 cookies. That seems like a reason. 

Oh my goodness.  When you say the math, it makes so much sense. But I'm like, and you were just like, yeah, all right. 96, 000. No big deal. Let's do this. You sound like you've got, at this point in time, you have so much, you just really took your joy and your It sounded like your sense of,  I don't know, like, yes, like, and you just ran with it. And honestly, it sounds like these stars aligned given like that. It's something you loved. It was the perfect time of year. 

Well, no,  let me, let me, let me point out. I don't know anything about making mass quantities. 

You're not a professional baker? Yeah, 

 no,  but what I did know is a lot of people who did know the answers to those questions.

Yeah. 

So I spent a lot of time just making phone calls. Um, and I was sending text messages to as many people as I could think of like, okay, how do I do this? What do I need to do? What do I need to think about? You know, and, and it was like, in hindsight, it was much harder than I thought it was going to be, because not only did you actually have to figure out how you're going to bake the cookies, but then they have to be packaged, and then they have to be packaged in something so that when they're shipped, the cookies don't break.

And then you have to figure out the whole shipping thing. And this was at a time that.  It was before Etsy and before there was like, yeah, like figure out how to do those things.  So I was flying blind and thank God that I had, another mom friend who's Twins were in the same preschool class as my son, who was just as crazy as I was. I was like, okay, let's figure it out. How hard can this be? 

Right. 

 That was kind of what led to the whole concept of baking 96, 000 cookies. Which wound up raising over 420, 000, but more importantly what we realized in that process is that we had hit a nerve with people and we'd come up with a way to talk about a really difficult topic without scaring people off because who wants to talk about a kid who has cancer? Nobody. 

Yeah. Who wants to talk about good cookies? 

Right. 

Everybody. 

Yeah, that's a conversation starter for sure. And it's cookies are something that brings you, you know, resembles happiness and joy. And so to bring it up with those emotions in mind is the perfect avenue to talk about something very important.

Well, and for me, it was the exact antithesis of what kids who get cancer make you feel like you don't want to talk about it. You don't want to think about it. I want it to go away. When somebody says, Hey, I want to talk with you about good cookies. You're like, well, what do you mean? Like the person are you talking about? What, what exactly are we talking about here? 

Yeah. 

You know, it's, those are two words that instantly make you smile and instantly make you curious. Like, what are you talking about? 

And I think in general too, I mean, cookies just remind me of kids. Like, they just remind me of, yeah, like the joy that they bring and just a little kid wanting a cookie, you know, and it feels fitting. Were you baking these out of your home? Did you have to go to a kitchen? Like, how did you? pull that off.  

Uh, well, we wound up renting a, Board of Health approved,  kitchen. And, I initially was planning on  making the dough. So I was like calculating how many dozens of eggs you'd need and what was the cadence of delivery that you would need.

Like how many cookies could you bake every day?  Baking from this time to this time. And if you had this many racks in the oven and yeah, there's a lot of calculating that goes into it.  And then I was lucky enough where a friend of mine who's a recipe developer told me that she would give me three of her best recipes to use for this cookie baking project.

And then she connected me with a gentleman. Who owned a cookie dough making facility just out of Austin.  He took the recipes, he adapted them to large scale, quantities because then it, like when you're, when you're a home baker and you see a recipe for like three or four dozen,  make it. But when you're talking about quantities that big, it's actually this whole science. There's this whole science thing that is behind it. 

So. Interesting. Yeah. 

Oh, it's, it's fascinating. So he told me that he would adapt her recipes. He would make the dough and he would send it to me for free. 

Wow. 

That was what. Yeah. Again, another, like, you know, I've had these, times, I mean, so many times during this journey where somebody has just bent over backwards and shown me so much empathy and that was another time.

That is amazing. And  it's really cool how,  you  just got started and then it kind of snowballed and people kept joining you and being like well Or we could do it like this or or we could this will be easier And I think that's to be noted because anyone you know If you've got something in your heart and you  just get started just go for it

  Other thing that like I find Interesting is that,  you know, people will sometimes say to me, like, weren't you scared? I was like, yes, I was terrified. 

Yeah. You're terrified. And, you know, I  kind of go down that path of, like, how did you know you could do it? I didn't know. You know, like, what were you thinking? And I was like, I wasn't thinking, I just wanted to help. And I think that we inherently. Get nervous about sticking our necks out, and having a big audacious thought like baking 96, 000 cookies. But what was going to happen if I fail? People are going to get mad at me because I tried? Like really? 

Yeah. 

Get mad at a mom who has a kid who is now Cancer free, who wants to help other kids. Yeah. So it kind of sometimes just kind of, it felt in a way like I was falling back and asking the universe to catch me.

Yeah. Yeah.  That makes total sense to me. And I feel like, I think as long as  you're coming from a good place, I feel like the universe will catch you and it will propel you forward. This is like a way. smaller, totally different scale, but it just had me thinking about how I started this podcast a year, a little over a year ago.

And I was kind of at a point where, you know, we had decided that we were going to,  complete our family by using a surrogate with some embryos that we use through IVF. And this was,  a year after we had,  lost our third daughter at 20 weeks. And, You know, it was just at a point where I was like, I just feel like I need to, I've been through  so many things in the last decade.

And I just, I didn't know what it was or what I wanted to do at first, but I was like, I need to just honor my daughters and like, put it out there, help other people, like give them the information and the community that I didn't have when I was going through all these things. And I didn't know what I was doing.

I didn't know where it was. I didn't really have any goal other than like, I just wanna start conversations and help people not feel alone. And, you know, I've been doing this, year and few months now. And,  it kind of snowballs and I think if you have the right intentions, I think it'll just kind of work out so  

people know they can, they can smell insincerity.

Yeah. Yeah. 

And they can also smell authenticity. And I really believe, I mean most of the time they can, I mean, 

yeah, 

but I really do believe that if you, if your heart is in the right place and you're going about things the right \ with a good mind, um, and as cheesy as this sounds, with love as your North star, you and your daughter, it was love,  it was love that made you want to do this,   things work out.

I agree. And it's just kind of like that genuine, feelings  and putting yourself out there. Like you said, you wanted to celebrate, your son was cancer free. You know, you wanted to give back and I think everyone can feel that. And that's when people jump on board. They're like, I want to feel this way too. I want to help this. I want to help this mission. so when you started this, what year was this? When the first batch of cookies went out? 

So it was holiday of 2007. Liam had been in treatment for about a year. So we did the massive cookie baking thing. We realized we had hit a nerve with people. So then, we went and let it be known. I thought I was doing something one time and that was it. This is going to be my one thing that I was going to do. And then, you know, my son was cancer free and I was going to go back to my life the way that it was.

And I also, have a daughter, my son and daughter, 20 months apart. She was 13 months when he was diagnosed and she needed me. And yeah. Yeah, so this is going to be one thing. Like I was going to do this one time. But then after we did the cookie baking project, the 96, we had hit a nerve with people. And so I felt this sense, my husband and I felt the sense of responsibility.

Like if we can create something that people can connect with and get involved in the cause, then we should do it because pediatric cancer needs all the funding it can get. I mean, one stat that I did not share is that even though it's the number one disease killer, pediatric cancer receives less than four percent of the National Cancer Institute's multi billion dollar budget, and it receives almost no support.

From the private sector. And when I say the private sector, what I mean are major pharmaceutical companies. Now, am I here to say that there's a bad guy in this? No, like I'm not here to say that insurance companies are bad. I'm not here to say pharmaceutical companies are bad. But  it is what it is. Those are, 

there's work to be done. There's people who need help.  

And, and I can also understand, from a business perspective, why There's not more money from the private sector dedicated toward pediatric cancer. And the reason is that unlike adult cancers where you have tens of thousands of people who have the same diagnosis, it's not that way in the world of kids' cancers so that you don't have the same numbers behind it.

Whereas if, if I'm a pharmaceutical company, if  I'm creating  a drug that. Million people could actually benefit from versus something that,   1500 kids, people could benefit from. I'm going to go for the one that has a million. So again, like, I'm not here to say that anybody's the bad guys, but, 

I'm glad you explained that though because I was like, but why? I was like getting fired up. I'm like, I don't understand it, but that, that makes sense when you put it that way, logistically and, and now learning that  pediatric cancer, I didn't realize that it's so different and that there's so many different types. Yeah. So essentially what we do with pediatric cancer is that we take all of the research that goes into adult cancers and try to make that work. for a child and see if it works. And in a lot of cases, like it does work, but what you have to do is, like,  I'll never forget one time, like talking to my son's oncologist and saying, well, like, how do you know how much to give a kid if it's not made for a kid and it's not tested on kids?

And that's something that you have to figure out, you know, and,  It's a little crazy, like you know that if you need Advil, that if you're 12 or older, you take one Advil, I think it's every four hours or something. There are no instructions like that on cancer drugs that are developed for adults that have a child's. prescription on them. 

Yeah. Wow. That's crazy. Wow. 

Like the more you find out, you're like, wait, what?  

Yeah. I mean, just the few things you've mentioned have blown my mind. I had no idea. 

No, you have no idea. So anyway, so we realized that we had hit a nerve with people. We spent the next year doing all the due diligence, like creating a logo, , filing all the IRS paperwork, creating a website, writing copy, explaining why this was important and why this was necessary, and then we decided that we were going to launch the organization in February.

September of 2008. It's like almost a year later. The reason why we picked September is because September, it turns out, is Pediatric Cancer Awareness Month, or as I call it, Pediatric Cancer Unawareness Month, because nobody 

Right. 

So we're going to launch it  during September and Pediatric Cancer Awareness Month. So we launched in September of 2008. Probably three weeks before we launched or so, my son relapsed for the first time. And people then came to me and they're like, well, you're, you're not going to do this nonprofit thing. Are you like, you don't have time to do it. You have to deal with his relapse. And I was like, are you kidding now?

I really need to do it because now it's even more important that kids have more treatment options available because my son is one of them. So we launched That was, in 2008. Today, I can kind of like, talk quickly through this and say that, unfortunately, Liam went through this battle where he would relapse and then he would get clean and then he would relapse and then he would get clean and, you know, He ran out of treatment options, and he lost his battle in January of,  2011.

And he's planning his seventh birthday, and I actually still have the birthday invitations that he was giving to people. Um, yeah, I, I just can't part with them. 

No, I get that. 

Yeah, but since then, we, have granted more than 21 million dollars it's been more than a hundred research grants. I think it might even be 125 research grants. We have helped to make more than two dozen new treatments available. 

I'm just like, if people can't see me right now, but my, I'm just like, mind blown. Like I read this, like when I was reading up on you and I'm just  that's, wow.  Did you ever think that you were going to have that? Impact. I mean, obviously you had the fire in you. 

First of all,  I'm going to say something which might sound weird, but I really don't feel like I've done anything yet because there's so much more  that I want to do.

Yeah. 

And so while. I'm very proud of it, but I'm also like, like, there's still so much more to do.  There have been over 16, 000 grassroots events in all 50 states and 26 countries. And yes, we do sell cookies year round as well for a donation. And a hundred percent of the proceeds still go to.

pediatric cancer research. But the primary way that we, or I should say that the, the way that we raise money that I really feel is the heart and soul of our organization are grassroots events. And people of all ages, locations, backgrounds have events for us, grassroots events, whether it's a bake sale or a billiard tournament or a, lacrosse tournament or a dress down or dress up day at school or at work.

Like it really doesn't matter.  It's the concept of getting involved by being a good cookie and helping to raise awareness around a situation that really needs help and attention. 

That is so cool. I love that. It is like just spread across the country and that it is starting these conversations and bringing awareness. I mean, obviously, the amount raised in the impact is extremely impressive. And I know from your point of view, just Really being in it and knowing just everything that can still be done. I mean, I, I can understand how it has become your life's work. I mean, you thought you were having one bake sale and now here you are making such an impact. That is so amazing.  I was wanted to ask you earlier too, when you were getting all of this started and, you know, with the first bake sale and everything, you know, your son was.  Preschooler. Did he understand like what you were doing or anything like that? Or did you have any involvement in it? I know. Obviously he had his own a lot going on now. 

Well, no, no. Like he, when I made the 96, 000 and then he was still in treatment for another three years after that. Yeah. You said that mommy made cookies and he'd love to come and help. But Liam never knew he had cancer. He didn't know, and it's not because I lied to him, and it's not because I hid it from him.

But remember what I said earlier, is that, You're here to answer a child's immediate question and he never said to me am I sick or do I have cancer? He didn't know what the word was. 

Yeah. Yeah,

so I would answer his immediate questions And he never asked me if there was something wrong with him. To him, it was just natural like yeah It's to the hospital a couple times a week and from his perspective. That was normal, 

right 

Because he didn't know anything else and he would see his friends at the hospital and he would go to school and see his friends at school and sometimes his friends at school would come with him to the hospital. Like it just was like we tried to treat it as. Routine as 

I was gonna say, that's that's his routine. It's what he knew. Exactly.

Right. 

Yeah, that makes sense. That's cool that he knew that like you were making cookies because you said he liked, being in the kitchen with you and everything. It's that's, that's special. I could ask you questions all day about so many things. This has been so, insightful and I'm really glad that we are bringing awareness to pediatric cancer.

I know you mentioned there's so many ways to be involved in this. I love all the grassroots stuff. Obviously I'm gonna, link the website, but I'm curious, how can anyone listening, if they were like, I want to get involved or I want this to start in my community, how can they do that?

So many ways that you can get involved, but I think the first thing is to decide that you do want to get involved. And maybe, you are somebody who makes the decision where you work of what to give for corporate gifts for either clients or customers. So we sell, and I say, I use the word sell, but when you get our cookies, you're actually making a donation to a nonprofit.

So you get a tax write off too, right? Yeah. Um, so we offer cookies. 365 days a year, and there are a dozen flavors of cookies, and they're really big cookies, and they're really good cookies, and they're made by a partner of ours, which is actually a family owned bakery in Northern California, and they're,  as cheesy as this sounds, they're actually really good cookies.

I love that. Good. Yeah, 

there are cookies that you can get.  If you are a corporation that's looking to get employees involved in an employee engagement type of opportunity, we have all different kinds of ways. Like we just did something on Friday where employees at a bank. Packaged up 2500 cookies that we're going to, our grant recipients are most recent round of grant recipients and they loved it and they felt good about 

so cool. Yeah, 

do at their office and they felt like they were making a tangible difference. So there's, you can get involved in an employee engagement level. If you are part of a mom group, or if you are at a. Employer who tends to bring in nonprofits to do different kinds of things, or if you love to bake, or if you have friends who love to bake, you can always sign up to have a grassroots event.

And they're the most common type of grassroots event like I said to you is,  bake sales because 

yeah, 

who doesn't love a bake sale and you know the fun thing about our bake sales is you can invite. co workers, five co workers of yours and everybody bring in three dozen cookies and put them out in a break room and put out a donation jar.

And that's, that's grassroots event. And the beautiful thing is that there's a lot of companies that match what you donate to a nonprofit. So you're instantly doubling your dollars. 

I was just thinking that. I'm glad you mentioned that. Yeah. And oh my gosh, as my wheels are turning now, I'm like, I am a part of so many mom groups. That is, that is so cool that everyone can get involved in different ways and help make such an impact. I mean, it's. That's awesome. 

And then the other thing about our bake sales that we always tell people is that you're not really  selling. What you're doing is you're raising awareness about a cause and the needs surrounding it.

So we always tell people, do not price anything at your bake sale. What you should do instead is you're asking for a donation. And the phrase that, A group and actually Charlotte, North Carolina came up with is take what you want and give what you can because that comes from the heart. And who are any of us to decide what is the right amount for somebody else to give? And. It always works out that when people take that route, you raise more money than if you were to price something at a dollar, 2, 3, whatever. 

Yeah. That makes a lot of sense. I like that. That's the perfect phrase. . So for anybody who's listening,  like we talked about before, if you have like the genuine feeling in you to support something like this, and get involved. Other people will join you. It's contagious, right? When you're authentic and it's coming from the heart. So hopefully anyone listening, that feels this way would love to join in on this. And I will link the website and everything so they can learn more. But I just, I really appreciate you educating us on, pediatric cancer and just your story, your son's story and what's come out of it, which is huge. It's been such a pleasure talking to you 

oh, thanks. Thank you. I really appreciate it. Like I said, awareness is step one to creating change. So if there is only one person who hears this conversation and says, what? I love kids. I want to get involved. I want to make sure that this doesn't happen, to somebody else's child or to another mom.

That would be the most amazing, amazing thing. And the crazy thing is, like, this is what blows my mind.  We now meet kids who are alive because of treatments that we've helped to fund. And that is just crazy because the very first treatment that we funded with the 96, 000, that treatment became available. seven months after Liam died.  

Wow. And it took you just. Starting baking cookies and it has gone from there. Like everyone can make an impact. I love that. And I've, you've already got one listed. I heard it. I heard the conversation I'm in, so I can't wait to tell everybody else about it. 

I love it. I am. My wheels are already turning of how I can, how I can be a part of this because I just, it's your story really touched me and it's just so important and to see what you've done and what. It can be done is really powerful, 

thank you. 

Yes. Well, thank you for joining me today. It was a pleasure having you on the show.

All mine. Thank you.

Thanks for tuning in. I hope you found this episode inspirational and valuable because I know that I did. If you are listening and your family has been touched by pediatric cancer or somebody close to you is experiencing this, I encourage you to click the link in the show notes and check out Cookies for Kids Cancer. The work that this organization is doing to support the battle against cancer for kids is just outstanding, and you will absolutely be proud to be a part of this organization. Like you heard, there are a number of ways that you can get involved. You can start a fundraiser, there are special events, you can get a business involved, and more.

It's all on the website, CookiesforKidsCancer. org, it's linked in the show notes. I have also included Gretchen's social media handles so you can connect with her there. While I myself cannot relate to this specific situation, I have navigated a handful of things and I have lost a Children, I have lost three babies in my second trimester, and I have found it extremely healing to give back in any way that I can to help other people. Not only does it make me feel one step closer to providing support and answers for other women who are struggling in ways that I have, but it has been a true blessing to be able to honor my daughters. in this way. 

So if you yourself know a child who is battling pediatric cancer or has unfortunately lost that battle, please consider getting involved with cookies for kids. As you heard, it is just absolutely amazing what one mom's story started as and what it is blossomed into in honor of her son, Liam.

If you haven't yet, be sure to follow the podcast. Whatever podcast app you're listening on. I feel like most of you are probably on either Apple or Spotify, but we are on Amazon music, iHeartRadio, and like a slew of other podcast apps that are out there. Hit that follow button because there are only like three regularly scheduled episodes left in season three and a bonus episode in the works.

And after that, we're taking a three month break. Season four will premiere on August 1st. But if you follow the podcast, new episodes will automatically pop up for you. You won't have to remember the weekly schedule. You won't have to search for the podcast. If a new episode goes live, boom, there it is ready to go for you. And while I say we're taking a break in between seasons,  I can almost guarantee you that I will absolutely be putting out at least a bonus episode or two. At least, especially with the excitement of bringing home a newborn baby and quote unquote being on like some like a maternity leave, which I'm going to be honest, I don't really know what that means yet.

Having two very active boys at home and being Um, being an entrepreneur and on my own schedule,  I'm going to do my best to soak up this time, but I also as a seasoned mom know that babies sleep and they don't do a whole lot other than sleep and eat and things like that in those first few months.

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