The Emotional Journey of Childhood Cancer
Episode 55: The Emotional Journey of Childhood Cancer with Danielle & Portia
September is Childhood Cancer Awareness month. This week, Rachael speaks with two mothers who have faced the unimaginable.
In this emotional episode, Rachael interviews Portia, mom of Leo, who was diagnosed with Cancer as a young child. Portia discusses the initial diagnosis (and the importance of listening to your “mom gut!”), the emotional journey through treatments, and the challenges faced by both Leo and his sister. Rachael also interviews Danielle, another incredible mother who shares her experience with her daughter Angelina's battle with cancer. Daniells shares some incredible stories about making the most of Angelina’s life, and a special surprise that came after her death. Please hear their stories, learn about their experiences, and find out what you can do to help children and families affected by childhood cancer.
Inside this episode:
The Childhood Cancer Society (CCS) dedication to empowering families who have been affected by pediatric cancer with both emotional and financial support.
The impact that organizations like CCS have on providing memorable experiences for families and kids going through pediatric cancer
Trusting your gut as a parent
Siblings of children with cancer may also need support and attention to cope with the challenges
The Wish Grant program offered by the Childhood Cancer Society allows children with cancer to fulfill their dreams and create lasting memories.
What Portia and Danielle want other moms to know
Mentioned in this episode:
Childhood Cancer Society website: https://www.childhoodcancersociety.org/
Link to donate https://givebutter.com/DD9cyK/rachaelshepardohta
If you enjoyed this episode, please rate 5⭐️ and write us a review! ⬇️
✨For sleep support and resources, visit heysleepybaby.com and follow @heysleepybaby on Instagram! 😴☁️🤎✨
Rachael is a mom of 3, founder of Hey, Sleepy Baby, and the host of this podcast.
Listen to the full episode
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Welcome to No One Told Us, the podcast that tells the truth about parenting and talks about all the stuff you wish you knew before having kids. I'm your host, Rachael, and today is a very special episode of the podcast.
September is Childhood Cancer Awareness Month. So today I'm going to be speaking with two mothers who have had firsthand experience with this. And I recently partnered with the Childhood Cancer Society, which is a nonprofit organization dedicated to empowering families who have been affected by pediatric cancer by providing emotional and financial support.
And so to help spread awareness and ultimately fulfill its mission, CCS uses multiple initiatives, including the Beat Cancer Party campaign, Adventure Ted chats, and the Adventure Ted Challenge. So today I am so honored to be speaking with a couple of mothers who are going to speak with us a little bit about their experience. And I'm just so honored that this organization has chosen me to be one of their brand ambassadors and to help spread awareness and spread these parents' stories to gain more support for this really important cause.
First up, we're speaking with Danielle. Danielle, welcome to the podcast and thanks so much for being here.
Thank you so much for having me. I'm really excited about getting to share our story.
Yeah, I'm excited to hear your story too. And I know that this can be a really heavy topic. So I just want to let everyone know that it's going to be heavy, but it's also really important that we talk about it and gain more awareness for pediatric cancer.
So Danielle, could you please just start by kind of introducing yourself and sharing a little bit about your family with, of course, a special focus on your Angelina?
So my name is Danielle. I'm obviously a mom. I have three children, Eden, who is 16, Angelina, who would have turned 15 actually last week, and Hope, who is three.
Angelina, who was my middle child, was diagnosed with neuroblastoma when she was actually right around Hope's age. She was just about three and a half.
Take us through what it was like to kind of in that initial phase of learning she had cancer or the diagnosis experience. What was your family's life like before? And then how did it change afterwards?
Angelina's diagnosis kind of came at a very transitional part of our lives. Angelina's father and I had actually just separated. I think part of what delayed her diagnosis initially actually was a little bit of distrust between us leading into our divorce. We both kind of felt like the other would use certain things as ammunition, which is obviously kind of a natural paranoia to have.
And we didn't really like kind of put together the pieces. You know, she would say to me like, you know, oh, I want you to carry me. And then when I would tell her like, well, I can't carry you right now, I would get, I want my daddy and she had this like low grade fever for a couple weeks and we were just kind of passing her back and forth like hey you know she had a little bit of a temperature maybe you want to keep an eye on and give her some Tylenol.
The last thing that we had kind of really had to get through before we were going to you know really go full on into this divorce was I had booked a cruise as we were going to get on the boat, she turned to him and was like, you know, Daddy carry me my legs hurt. And he told her he couldn't. And then she started to cry like, I want my mommy.
And she had had like this little bit of a fever that day too. And I said to him, I'm like, listen, can we talk about this. Like, I just need to know, has she been doing this? Like crying and saying that she wants to be carried, telling you that if you can't carry her that she wants me. I'm like, you know, I'm not going to use this against you in a court of law.
I'm like, I'm asking you because I'm now a little bit concerned. And he was like, yeah. We walked onto the boat and that was kind of like one of the last times she really walked the whole trip, you know, complaining that her legs were bothering her. She had this fever and it kind of kicked into overdrive and just as we were watching it on this trip, you know, it was all over the place.
And I had taken her like down to see the ship doctor and I basically got told because I hadn't purchased travel insurance that was going to cost me hundreds of thousands of dollars if I wanted to get her like meda vacked off this boat. Needless to say, I'm now a travel agent and I always tell people, take the insurance because you don't know. She was miserable like this whole trip. So we got home and a lot of doctors were kind of like, oh, well, you know, kids will get fevers from unknown origins and they'll usually resolve.
And I'm like, well, it's, it's been like a couple weeks. We have a family history. I myself carry the breast cancer gene. You know, I had said to one of the doctors, like, I think she has cancer. And they all kind of were like, don't you think you're being a little bit dramatic? And I was like, no. And I'm like, I'm telling you that there's something really wrong. There's something seriously wrong. And finally, her regular pediatrician, who had been out, finally had come back and asked everybody after we'd run a whole bunch of different tests like blood tests and all these other things like, you know, what did this physical exam show?
And it turned out that no one had done one. So he did, you know, a physical exam and found like a spot and left the spot and then came back to the spot. We wound up going in and having that spot looked at. And then that, you know, ultrasound there turned into an MRI and a CAT scan, and that turned into a phone call, you know, telling us that, you know, they had found a malignancy and that our child had cancer.
I'll never forget, Angelina was actually taking a nap when we got that call, and we were at my ex's apartment, and he turned to me and he was like, aren't you going to say I told you so.
And I said, I'm like, I didn't want to be right. I just wanted my kid to get help. It was not quite a week after we had gotten off of our cruise. Angelina started chemo. And I remember, like, legit,like having a meltdown while she was, like, vomiting and screaming, and The nurse was staying there. And I said to her, I'm like, I literally was on a beach last week with a margarita and not a care in the world.
And now I'm here and my kids having chemotherapy. I'm like, these are not two events that are supposed to be juxtaposed next to each other. But yet that was exactly what happened.
Yeah, it's incredible how quickly this all happened and how quickly life can change. And I'm also just struck by the fact that you had this deep intuition and this knowing that there was something serious wrong.
And I think that's a huge message that you need to listen to that voice, telling you that there's something seriously wrong. There's actually one thing that I say to a lot of parents when their kids are diagnosed or when they feel like there's something wrong with their child.
And I always say to them, I'm like, What is a doctor's business called? It is a practice. They are practicing medicine. You are going to someone who has an extensive amount of knowledge,
and you are asking them, to the best of their knowledge, what they believe is wrong. While they may know medical science, you know, as well as they do, the reality is that you as the parent know the thing that they don't know, which is the patient. And I also joke around that,
you know, I'm technically, I'm the manufacturer. So you know your child. You know what is normal and not normal for your child.
You know, when these doctors were telling me that, you know, it's normal for a child, which Angelina, in addition to having cancer, also had congenital adrenal hyperplasia,
not in the typical way that most kids do. They would be like, well, it's typical for a child with, you know, congenital adrenal hyperplasia to have fevers of unknown origin. And I'm like,
well, she's three and a half. We haven't had any symptoms of that at all ever. So statistically, What are the chances that now three and a half years in,they just magically start showing symptoms that she never had? And you have to advocate for your child. It's a collaboration.
You know, there are doctors, and then there are the people who I consider to be healers. You know, doctors treat diseases and healers treat people. And you're going to run into a lot of doctors, you'll run into the, you know, your healers, make sure that your concerns are listened to their wants and their needs are listened to and, you know, try to remind them that you're collaborating on care here. It's not just them telling you what you're going to do. Right. So then you've got to work together.
Yeah, exactly. Your team. And everyone has the best interest of the child at heart but you're right the parent knows them like nobody else can you tell us a little bit about how you got involved with CCS and a wish grant program the enchanted theme park experience how did that all start or come about i had actually met tommy back in 2016 i was going through kind of a really really rough patch uh angelina's cancer had relapsed she went through this period where she couldn't really be around people.
She had had like a second stem cell rescue. And it was just sort of at a really bad time for me. I owned my business and it was just like a lot of my, I owned a fitness franchise, a lot of my instructors, you know, their kids were getting older. They, you know, couldn't work the same hours. And with Angelina being sick, like I wasn't really able to fill in those gaps.
So I wound up kind of having to let my business go. I had had a full -time job that I had been working on top of that. There was a big shake -up and things kind of got reorganized at work. So I wound up losing my job on top of it.
And I had been introduced to Tommy, you know, and their program to kind of help parents out a bit at that time. Tommy and Angelina just kind of like gravitated toward each other.
Like, they were, like, thick as thieves. They, you know, would always, like, be laughing and joking. And, like, she loved him. He loved her. Anytime that they were going to be doing something, Tommy would call Angelina and ask her if she wanted to be a part of it. She had kind of gotten better for a little while, and things seemed to be kind of moving in that right direction.
And then in December of 2018, Angelina's cancer had relapsed again, and she wound up for the first time, like, since her initial diagnosis, having solid tumors, where before it had been a lot of bone marrow disease, you know, this was the first solid mass since she had initially been diagnosed. We really only had one treatment option left that we hadn't ever done, and It was a type of therapy where they inject your child with a radioactive isotope and then kind of put them in like a box so that they don't contaminate everyone around them with this radiation.
We had been offered it years before and I had kind of turned it down because, I mean, at three and a half, how are you supposed to explain to your child that you can't hold them and that they can't be near you?
I hadn't wanted to do it Because I'm like, if she lives, that's going to be great. But are we really going to want to live with the person who that treatment would create? So by now,
Angelina is nine years old. We had kind of run out of options. And there's a big difference between doing a treatment like that with a three -year -old and a nine -year -old. So that was what we kind of decided to do as our Hail Mary.
Her doctor had kind of flat out told me that, you know, this was sort of our last hope. If this treatment wasn't successful, we had run out of options. When Angelina had gotten sick, I had made a deal with her original oncologist. I knew that we were kind of renting time. And my deal with her was that I would go forward with treatment and everything and do everything I could, but year or so if this doesn't work out.
And I said to her, I'm like, that's all I need. I'm like, because my concern was that I just wanted her to, you know, do something special. The time she was diagnosed, she was three and a half years old. You know, this was the first vacation we'd ever been on. She hadn't done anything. She hadn't lived yet.
So I was like, all right, I've got like a year here to kind of cram everything in that we haven't crammed in yet, and do anything that she, like, wants to do. She's getting this treatment, and she's kind of, like, you know, all the way across the room and her little, you know, radioactive box thing. I'm asking her, you know, like, what do you think you want to do? And she's like, when I get out of this box, I want to go to Disney.
And I was like, okay. So I, you know, posted online, I was like, hey, if anybody has like airfare points or something or whatever, it would be a really big help. You know, Angelina has mentioned she'd like to go to Disney. And Tommy reached out to me and he was like, you know, it's funny that you should mention that because we're putting together this wish grant program.
And I have this character who I've created called Adventure Ted. And, you know, we want to do this whole, you know, thing where we grant kids a, you know, a wish at the, you know, give kids the World Village in Florida. And we've been trying to figure out how to navigate through it. Would we be able to use Angelina as sort of a guinea pig for this program.
And I was like, first of all, if you think I'm going to let you test something on my child, you are absolutely correct. And, you know, what do we need to do? And that was, you know, how this program kind of started. You know, it was me and my mom, my best friend and my two kids, unfortunately, Angelina's father wasn't able to join us the year before he had actually been diagnosed with Lou Gehrig's disease.
At that stage, he wasn't able to really travel anymore. So, you know, we loaded the kids onto a plane. I actually didn't tell her we were going. She thought that we were going to visit my sister in Texas. And we had actually just come back from there in December, and we had wound up getting stuck in the Dallas airport on standby for like 12 hours.
So I told the kids, all right, we're flying to go visit Aunt Jacqueline. And because you guys were animate that you didn't want to like ever be delayed in Dallas again, we're going to connect through Orlando.
So smart. So we fly to Orlando, I can't decide if that was, if I was really smart or my kids are just really gullible. We wound up flying into Orlando and when the plane landed,
you know, I got off the plane. I was like, oh, like, I'm getting a text from the airline that there's something wrong with our tickets or something for our next flight. Let me go see what's going on. So I like, you know, get off the flight and I'm like standing there on the jetway, wait in a couple minutes. So then I turn back around. I tell the kids like, uh -oh, there's an issue, and our flight to Texas has been canceled.
So now we're going to have to stay overnight. So let's get our stuff. We'll get off this plane. And, you know, they load Angelina into the wheelchair and we're, like, walking. And we head down towards the baggage and the woman from Give Kids the world there. And Angelina is so confused. The woman's like, you're here for fun. And Angelina is like, I don't get it. So when the kids finally, like, registered that we were going to be going to Disney, it's funny in the video. My son, like, made a comment about how I, like, had lied to them. And Angelina had said to him, well, there's more than one kind of lie, and this is a good kind of life. That is true. And it was sad and, like, bizarre all the same time.
That was in February of 2019. We went to the Wish Village. We, you know, we did our wish. We had an absolutely incredible time. I kind of jokingly to tell people that Angelina's last year began and ended with Disney. You know, we went on the Wish Grant, and then that was in February 2019. You know, that whole year, I just did everything that we could for her to, you know, have an amazing year. She wanted to go to Las Vegas and go zip lining. She wanted to,
she wanted to actually bungee jump into the Grand Canyon.
Oh, my gosh. Well, I have a friend who has a degree in aeronautics and space engineering, and and he tried, then she wanted to but, when I told she couldn't bungee jump, she said that she wanted to base jump across it. So then I had my friend who has a degree in aeronautics and space engineering trying to explain to her why she couldn't do that. And when we got to the end of it, I asked her what she understood now. And she said, I understand that it's theoretically possible, and I'm going to prove it. So our compromise was that we were going to have, fly a helicopter into the Grand Canyon and then go indoor skydiving. So it was like everything that she had kind of ever really wanted to do, I tried to make happen.
And it was probably the end of October, beginning of November of 2019, that she just wasn't doing as well. We were at our home hospital. They kind of had told me what the people at Sloan had told me was that, you know, she'd kind of stopped responding to treatment.
They were going to refer us to the palliative care team. And, you know, that was kind of hard to swallow. I'm sitting there trying to figure out how I'm going to explain to this palliative care doctor that, you know, her original oncologist had promised me that when we were coming to the end, they would make sure that she could, like, do something really incredible,
something kind of once in a lifetime -ish. So I'm, like, freaking out a little bit because I'm worried that this person's going to tell me that she has to, like, stay in the hospital and all this stuff. The palliative care doctor was actually her original oncologist who walked in.
She had changed hospitals.
Wow. Oh, my God. And She sat down and she said to me, she goes, so what incredible thing is our girl going to go do? And I pulled out Angelina's little bucket list sheet and I said to her, I'm like, I don't know, this is everything that's left that I didn't get to. What do you think she's going to be able to even do? And she was like, you know, well, we have co -treated a patient with a doctor on Oahu.
She goes, so we would feel comfortable letting her go to Hawaii. We, you know, we packed her up. We took her to Hawaii. She swam with sharks well actually this was funny i'm not really sure like what my daughter's deal was she seemed to have like a death wish um she wanted to swim with sharks and i was like so proud of myself i found this little like sea quarrying place on Oahu where you could like swim in a tank there with their sharks and i was like so proud of myself and we get there.
And, you know, we get there and we show her the sharks. And she's just like, this isn't really what I had in mind. And I'm like, well, what did you think we were going to do? So she like whips out her phone and she brings up this video on YouTube where they're like pouring blood into the shark cage off the coast of South Africa.
Okay. So it wasn't hardcore enough. And the shark is like grabbing the cage and shaking a hair. And I And I just, I looked at her and I was like, what is wrong with you?
Oh my God, she sounds amazing.
I'm like, we are going to swim with these very calm, very well -fed black -tip reef sharks. Or we have to go back to the hotel for mommy to sit and time out at the hokey lounge for a little bit and have a drink.
And then the next day, I take her to swim with sea turtles and uh you know they take us like a mile offshore so and there's this like crater in the you know like a meteor crater left in the bottom of the ocean there and the sea turtles apparently like to like sleep there or like rest there before they like continue on their journey so just as she's about to jump in Angelina turns to me and she goes, you know, mom, the sea turtles are hiding there because they're trying to avoid their natural predator, the tiger shark. I bet if we hang out here long enough, we could see a predation. And then she, like, jumped off the boat.
And I turned to my fiance and I said to him, I was like, so fun fact, Tom. I was like, I just pay to not get off this boat. And he's like, well, what happens if a shark shows up? I'm like, I'm going to be honest with you. That might actually be how she wants to go. I'm like, and who am I to stand in the way of heard wishes? When we got home from Hawaii, the hospice lady, like, came to my house. And she wanted to, like, measure my house for a bed and all this stuff.
And I said to her, I'm like, that's nice. I don't need you and I don't want your crap in my house. And she was like very confused. I said to her, I'm like, I will be back in time.
And she's like, what do you mean you're going to be back at time? I'm like, just, just chill. I'm going to be back in time. You know, I took her to home hospital, had her, you know, blood tests, got her, you know, whatever stuff she needed to be well enough. Loaded her on her plane, took her to Disneyland. And then I got her home, and, you know, we were in clinic one day, and I was thinking to myself, I'm like, all right, I'm like, I got in, like, all this stuff she wanted to do. Sure enough, she turns to me, and there's an ad for, like, the Hagrid's magical motorbike thing on TV. And she goes, next time we go to Orlando, we should do that. So the next day, we boarded a flight to Orlando.
Oh, my gosh. And we went to go do Hagrid's magical motorbike. didn't tell her. I couldn't tell her. Ultimately, they think she had COVID. I mean, you know, it was like February 2020. I was going to say, so it wouldn't, it would have been even before it was like widely known that that was a thing.
Wow. Yes. She was diagnosed with fibrous sycumonia. And the more they tried to treat it, the worse it She was kind of in and out of it all that last day, and she actually woke up and said to me, she goes, I'm going to have a baby sister. And I looked at her and like, is your dad having a baby and he didn't tell me? And she's like, no, mom, you and Tom. And I said her, I'm like, you know, Tom's like really old. I was like, I'm fairly certain that I can't, like, have any more, you know, small people. She's like, I'm going to have a baby sister. And name her hope. And I'm like, that's very nice. But that's not really how any of that works. I was like probably one of the last, like, real conversation she and I kind of had.
And she passed away the next morning. Hope was born 54 weeks later. That is so incredible.
Yeah, she, it was funny. 2020 was the leap year and Angelina didn't live long enough to see the leap year. And my water actually broke the day after my birthday. And I turned to Tom and I said to him, I'm like, you know, Angelina tried to give me the baby for my birthday, but she forgot about the leap year. So she's a day late.
Oh my God. Wow. She sounds like such an amazing, amazing kid.
Yeah. Her funeral was the one -year anniversary of our wish trip.
Wow. So when you said that her last year kind of begun and ended with that trip, that's exactly what you mean. Yeah. Thank you so much for sharing all of that, Danielle. I know it's probably so hard to relive it and it's not even all that long ago, just a few years ago. What are some words of wisdom? What are some things that you've learned through this process that you would share with other parents who might be going through this or just in general?
I think the way that this has changed me the most. And the one thing that I share and try to instill in a lot of people between, you know, Angelina and my ex -husband, there will always be time to go to school. There will always be time to work. But you have to live with the time that you know you have, which is now. We all get this idea that we have all of this time,
you know, well, when I retire, I'm going to, you know, travel, and when I retire, I'm going to do this. And, you know, when I, whatever, when I have money,when I have no time's ever going to be a good time. You can't bank on time that you don't know you have. Do we all want to live to be 100?
Yeah. But I love to live to be 100. Absolutely. But I don't know if I will. You know, there'll always be bills.
Yeah. Go now. Do it now. You want to write a book? Do it now. You want to climb a glacier in Alaska. I mean, at least wait for the spring. But, you know make it happen now like because that's all you know you got so
Thank you so much yeah i think that's really really good advice especially for those listening who have little kids i think sometimes certain things can feel overwhelming or too hard um it's always oh we'll just wait till they're older and like you said life is so short and we just never know how much time any of us have so i think that's
really great advice to live in the moment.
Next, I'm speaking with Portia. And so thank you so much, Portia, for joining us. I would love to hear you just kind of give us a little intro into your family and tell us a little bit about Leo.
Absolutely.
Rachael, thank you for having me and for doing a podcast on pediatric cancer and childhood cancer, the process, the survivorship, all of that. The experience as a mom, as a family, we need more of that out there. So thank you so much for doing this. And again, my name is Portia. I live in Miami, Florida. My husband is Arturo. My now nine -year -old is Leo. And my soon -to -be -eight -year -old is Malija. So we are a family of four plus two Frenchies. So family of six. We were living our best lives, you know, doing our little thing.
And then we had a life -changing diagnosis.
So, yeah. Yeah. Tell us a little bit about that. I would love to kind of hear, you know, what made you seek diagnosis or what actually happened there and then what happened shortly after.
So not to, you know, scare moms or anything, but, you know, one day we were eating dinner and I looked across the table and Leo had a bulge in his neck.
And for some reason, I'm not one of those moms that's like always probing and probing and like, you need a band -aid. I'm kind of like, oh, let it bleed. It'll heal. But something in me was like,\ what is that? And I got up and I felt it and he didn't, you know, he didn't nudge like it hurt, like a lymph node. You know, when you're sore and the kids are like, oh, it hurts. It didn't hurt. And all of a sudden, I don't know why. I got this shooting painthrough my body, which I never, I never get that.
And I thought, this is probably some fatty cyst, you know, tissue, but I'll never forget that shooting pain. And lo and behold, a few weeks later, we saw a pediatrician, got a biopsy, and it turned out to be cancer.
Wow. And so what was it like to hear that for the first time to hear your doctor tell you that your child had cancer?
Yeah. So it was February 2021. We were in the height of the pandemic. And we had spent a few days in the hospital to have the tumor removed. I didn't think it was cancer. I didn't, that didn't even cross my mind. Just I was worried more about the sutures and kind of how we were going to heal over the next few weeks, you know, like mom's stuff. And lo and behold, we all got COVID. And so when we were discharged, they told us, oh, we'll call you in a few days if there's anything with the biopsy.
And you literally are like, okay, you know, working on getting the kid ready for school, getting them back in. And then bam, I got a call from the oncologist, and as soon as he said his name, it was like, life stopped. My heart, my breathing, my being, everything just stopped. And I remember hitting the speaker button and running to my husband's office. And I was like, and he was like, hello, Mr. is Diaz um you know Leo has cancer and it was just I couldn't it was like wow and I just couldn't contain myself I'm like what's happening right now um the feeling is is an indescribable indescribable I'm sure it's like every parent's worst nightmare to get a call like that How old was he at this time?
So Leo was five and a half when he was diagnosed. Luckily, we got it early. We treated it. And he had a 93 % like survival rate. So regardless of that, it was still hard to go through chemo and be in the oncology world. I became like a momcologist. You get, you know, thrown into this whole new world, just like with any trauma, like with a, you know, mothers, you know, with the drunk driving where you lose a child from drunk driving and then now you become an advocate.
You start learning all about this world, if you will. And so I was in it, in the thick of it. He went through treatment. After four months, they said, Portia, he's cancer free. And then, unfortunately, on his sixth birthday, I noticed the mass again. And it was a Wednesday, and he had summer camp. And I remember all the kids wore his little shirt. Leo doesn't fight alone. And I said he's not going to summer camp. I'm dropping off my daughter. I got to go right to the hospital. Something isn't right. And it's just so ironic it was his birthday. You can't make it up, you know. So I took them and the doctor was like, highly unlikely, Portia, 94 % chance. This is not, this is not back. I've never seen it. You know, go home. Let's check it in a week or two. And we went home. We had his big birthday party.
And then Monday morning at 8 a .m., I was like, no, something's not right. it's bigger it's it's it's telling you something's wrong so he said come in they went right to surgery and um the surgeon came out and she was a mom she had a daughter the same age as leo and she couldn't like legally tell me but i said please just give me a sign um so that i can process this a little bit before he wakes up so i can get this out and And she just, like, patted me on the shoulder. And I said, thank you. So I knew that it was back. And that gave me some time to just process so that when he woke up,
I wasn't like a complete mess. So then, unfortunately, he had another treatment that was way more aggressive. We lived in the hospital for almost seven months on and off, a week on, two days off, a week on, five days off. It was a really hard time. It was a really hard time.
Yeah. And so did he kind of understand what was happening? How did you talk to him about this?
Oh my goodness. So I created a whole fictitious character for him to try to like give him a role to play. So we called him Leo the lymphoma fighter. And I got him a cape. And we were always doing like little reels and little things to try to give him a sense of self of like, what's going on? And it worked.
It really helped. And honestly, what saved us looking back now is that little ones cognitively until they're like seven or eight or nine, they can't really cognitively think abstractly.
So that's why you and, you know, kind of play in that world. So he didn't really fully comprehend everything. And that saved us.
However, a word of advice for anyone that has a child and a sibling or siblings that may go through something similar or some other trauma that requires one child to get a lot of attention and a lot of, you know, hospital stays and just attention from mom and the community, the siblings. I didn't think about my daughter. I thought Leo would be the one who was, you know, who had issues.
My daughter was four. She had to live with her classmates, with neighbors. She wasn't allowed at the hospital because it was COVID, and she didn't understand. So one day she said to me, Mommy, I want cancer too, because all she could see is when you have cancer,
you get gifts. People wear your name on their shirt. You get to stay with Mommy in the hospital. So this was something I didn't anticipate, and something we're still working through three years later.
I think if anyone was affected most, it was her. And I feel so bad about that because I didn't think it would be her. Yeah, I'm so glad you brought that up, though, because that was actually going to be my next question because I know he had a sister.
And it was, I was wondering how she dealt with all of that, because of course, she was so young. Yeah, she was so young, but she still carries that in her, that she's in his shadow, that he's loved more, that she's less than him. So it really imprinted on her. And I'm hoping with time and with growth that we can kind of reestablish and not deny that,
but just try to like work through it. Because, yeah, It's been an issue. It exists every day of our lives.
Yeah. I'm sure. So please, moms out there, you know, sometimes you may need to put more effort into the siblings than the child who is ill or who needs the attention, believe it or not. However, we can do that. I know there's so many things, us moms, we have so many things to do on our plate, but something I learned the hard way. Yeah, that's so important.
I'm so glad you brought that up. Thank you for sharing that. I know it must be difficult.
Can you tell us a little bit about how you kind of first got involved with CCS and the Wish Grant program?
How did that all come about? Yes. Oh, my gosh. What a blessing. So I got an email from CCS about the Wish Grant, and this was the first time anyone had really reached out to me about something so special. And at first I was like, this can't be real, like going, you know, for a whole week to all these theme parks with the kids, like fully paid.
And, and you're just, it's like so magical, you know, we hadn't been where we didn't have the money, we didn't have the, just the strength, you know, when you're going through something so hard, it's hard to say, hey, let's take a vacation, you know, that's like, you're just survival mode, you know. So this was a blessing. It was the most amazing experience. The kids remember it to this day.
They got to have ice cream for breakfast and they got to go to literally every theme park and like be treated VIP like no lines like just it was fantastic especially when you have a sick kid it's hard enough staying with kids in lines and beating the heat and the rush you know um of lots of people and strollers um so this was magical to say the least. And I'm sure something really nice for your family to bond through to, right? Do you have any favorite memories from that trip or does Leo talk about it still?
You know, I do have a favorite memory. It's actually, I knew you were going to ask me. And it's,
we went with a few other uh to the theme park adventure and one of the the girls her name was luna and her and leo really bonded she was a few years older magical she's a magical girl and she kept getting nosebleeds you know side effect of chemo and leo was kind of like uh not feeling so good and it was raining and all of a sudden this beautiful rainbow came out and I was like, wow, guys, jump up and they got up and they're wearing ponchos and they're hugging and there's this magnificent rainbow behind them. And it's just a snapshot of like that moment and that connection that they had and just the joy that they were brought at that time.
And right now, Luna's having a hard time, four -time bone cancer. So I don't, you know, when you see it, we all know kind of the moms. We kind of, in this world, we know, we know what's going to happen. But you fight, you're thinking a miracle will come, and sometimes they do. But It's hard to see that and know that my child lived, but some of these other kids are. It's really sad.
It's a hard way to go for the kids and for the parents, because you give them the medicine, that's the poison, that keeps them alive. But it's also what kills them. So you're giving them, you know, something that ultimately they may not survive. So sometimes surviving the cure is harder than surviving the cancer for these kids.
Yeah. Yeah. The treatments are so intense. So what were some of the things that Adventure Ted did for Leo or what are some of Leo's um oh my god that cute little bear we still have them we got them all over the house he's a cutest little thing um adventure ted first of all is teaches a good lesson you go to the theme park and you're looking for him and there's clues and you have to follow the clues and it takes you to this ride and that place and it's
so fun for them so fun.
Yeah and they're like but where's adventure ted and then after all of this searching you realize that you don't actually find him but it's it's not the finding him but it's the journey getting there that's more important so that's kind of the the lesson if you will and of course there is adventure ted there's like a little Betty bear, but you don't actually like Mickey Mouse or something, you don't go and actually meet him. So there's a book and it just kind of relays this message of it's not about finishing or getting there.
It's about the journey getting there and living in the moment and enjoying the moment. And for some of these kids, that's all they have is a few moments, a few weeks, a few months. So might as well make it the best it can be for them, which is why the Adventure TED program is so special. Because some kids are terminal that go. Some kids are terminal. So, yeah, it's really special for them.
They deserve the world. You know. And like you said, the siblings, like it's something so special for everybody to be able to participate in and enjoy. were, the, Live in the moment. Don't sweat the small stuff. I used to feed Leo and my daughter 100 % organic food formula candy. They weren't allowed to have red 40. They weren't allowed to have Doritos. They weren't allowed to have anything. My kid got cancer anyway. So it wasn't about restricting and being militant, but instead being mindful and educated and just living a little bit,
you know. So I eased up a little on that, although I still use vinegar and water to clean. But the point is, anything can happen. Yeah. Trying with the balance.
Yes. And the other thing is go with your gut and you have to be your sons or your daughter's best advocate. You will be a momcologist or whatever realm it is. You've got to be the advocate because people make mistakes in treatment plans. People make mistakes in daily nursing protocol.
So you have to be on it. It's so hard and tiring, but you can do it. You've got to do it for your kid because people make mistakes. And trusting 100 percent isn't always the best measure.
Your gut, your mom gut, it's there for a reason. Yeah.
Absolutely. And it's so interesting that those are your two main takeaways because Danielle,
the mom that we talked with earlier said the exact same things. Wow. Really amazing. Yeah, just live it, love it. your gut.
And then, you know, the kids are hard. Let's be honest. It's not easy being a mom. You know, working moms, stay at home moms. It's like there's a lot of roll strain. You gotta be this,
that, everything all in one. And sometimes you, you know, your temper is short or your patience is thin.
And the kids usually get, you know, some sort of repercussion of that attitude or, and that's normal. But just sometimes take a deep breath and every day five minutes just spend five minutes with your child like a snapshot like a and just spend that that time as if it's your last five minutes every day or two minutes or 30 seconds just take that in because all the other stuff goes away what is it that they say the the days are long but the years are short something like this.
And if someone gets sick or someone has to battle cancer and we don't know if they're going to survive, that hits you harder than anything. So just enjoy a few minutes, even if they're tantruming and you're like a hot mess express, it's not that bad. Just breathe, take it in and just keep going one step in front of the other.
I'm sure this, yeah, I'm sure this puts everything into perspective for you, too. Like you said, don't sweat the small stuff. It's probably, it probably changes your perspective on all of those types of things, tantrums. And yeah.
Yep, pretty much. Yeah. Yep. Absolutely. Because, you know, we don't know how much time we have or they have. Right. Yeah. So, Portia, thank you so much. Minds for Lent -A while we're here. You're much. You're welcome.
Thank you. Thank you so much for sharing Leo's story and for sharing so openly and candidly. I really appreciate it. I know parents out there, whether they've been affected by childhood cancer or not, I'm sure that they are going to find so many things that you said that will resonate. So I really appreciate you sharing. Thank you so much and have a great rest of your day. Thank you. Big kiss to you, my love. Keep Doing the good things you do. Take care.
