I & Eye Productions’ Post

Transcript

I would describe it as someone who's courageous, lively. Full of life. She just loves well, she sees others well. She's bold and courageous. When there was 4, she's just started having leg pain and we just kind of assumed that it was growing pains because we're both pretty tall. And the growing pains that just the pain didn't go away. She had like that motherly instinct. And I'm just like, she's fine, you know, nothing to worry about it. And there was just something like wasn't settling right with with Aaron through that whole time. And so that was a. An indicator that maybe we should go get this checked out and see what's the root of this leg pain. So we, we did, yeah. We ended up having an ultrasound done and that's when they found the tumor and it was just super surreal. And yeah, you just. You just aren't ready for that. You know You aren't ready to hear. Your daughter has cancer and. It was just like our lives changed instantly. Yeah, it was kind of shock. It was. All of the fields, Dr. Weiss, who was there up at the Liberty branch, he happened to be the guy who saw the tumor and he said. By the way, I'm 99% sure this is neuroblastoma. And also I helped. I'm your guy. I helped write the protocol for the country. She was diagnosed with stage 4 high risk neuroblastoma. And the first couple of days that they were doing all the testing to see how severe it was. And that's when we were told basically it was everywhere in her body. That's what was so scary because you're just like, what? What are we going to do? And for the first time as a parent, you're completely have no control of, you know, the outcome of this. Neuroblastoma is a cancer of the adrenal gland, so not something we think about everyday, right? Neuroblastoma cancers only happen in really little children. Almost everybody who gets it are under five years old. So it's a a cancer of babies. Unfortunately, you're blastoma is tough to treat. It's one of the hardest cancers to treat in children. And often when it's diagnosed, it can have spread from these little glands on top of the kidneys all around the body. There's a bunch of different ways that. Could respond or not respond in the first six months of her treatment. It didn't respond to any treatment. And it just got worse. Thankfully, Dr. Weiss had a lot of knowledge about all the different research that it was being done in the latest. Treatments and he was comfortable to go off the original treatment plan and try other options with MIB G treatment and immunotherapy. Immunotherapy actually was the one that her tumor finally responded to. To have to see her so sick month after month and then scan after scan, it's getting worse. It was just like, finally we have hope. Um, that this could go the right direction. So here we are seven years later and we've never been told by a doctor that there's no evidence of cancer anymore. We've had to live in this like faith journey of just like, OK, we never got to get to a place where we don't have to think about it, you know, like it's always there. And yet we don't live in fear either. And she doesn't live in fear either. Like she lives life every day to its fullest. What we do, it's, it's difficult. We look after. Children with cancer. But one of the things that makes our job so rewarding is to see the children grow and thrive after they've been successfully treated. And it's a great joy to watch all the wonderful things that they are able to do as they grow up. Cancer Free Kids is a great program. That I personally think. Could be a lifesaver and a game changer to so many kids. You have to go through really, really hard treatment. That damages their body. So I think that help finding better ways to do that. Is amazing. When I started, most children with cancer died. Now most children with cancer survive. But that doesn't mean we're done. We're no, we're nowhere near done because our treatments are hard and our treatments are difficult. So the most important thing that's happened in the last 10 years is that we're starting to develop easier treatments, treatments that are easier on the children, easier on their bodies so that they grow up to be fully healthy. You don't have organizations out there that are that are trying to. Help advance medicine and help get us to a place where we don't have to see kids suffer. That's why I'm so impressed with Cancer Free Kids because they're boots on the ground, they're getting involved in some of the hardest stuff. And the thing that's special about Cancer Free Kids is that they are willing to be bold and fund new ideas. Ideas that are sometimes a little out there, a little different that other organisations aren't going to fund. And that's how you can find the home run, the new thing, the thing that will change the whole game. So incredibly important when you see some of the. The things that we got to see some of the families that weren't as fortunate as us and lost a loved one. And and then you, you want to do anything and everything you can to make sure that doesn't happen to another family. And that's what I love about cancer free kids is that they're doing everything they can to help prevent that cancer free kids of I've got a very visionary leadership board and system that is willing to see a great new idea and go with it. Every little bit counts. I mean, there's always, there's so many things that you can do to get involved, whether it be giving generously with your finances or with your time to just get the word out of the need. It doesn't matter if you're volunteering your time, your resources, whatever. There is a great need in our community for these families and I love the heart of cancer free kids and what they're trying to do to get involved in that. My advice to another kid would be that there's always going to be hope, even in the tough stuff.