Angela Newton Roy Photography

 

THE WON SESSIONS

We all have a story. It’s my belief that through sharing these stories we can connect with each other. We can uplift and encourage one another. I don’t think we share our vulnerabilities and our tough experiences enough. It can be more popular to keep these experiences to ourselves, for the sake of seeming to have it ‘all together’ or being ‘strong’, especially for women. But I really believe that it’s through these real moments, challenges, and struggles our true strength is revealed, and the beauty of love and life can be seen. So I’ve created the Won Sessions. A place to tell the stories of strong women who’ve overcome…triumphed…persevered. Who’ve won. In their own way. With their own beautiful light, hope, and joy to share. This is the story of Ariane.

“You don’t know what you’re made of until you get put through something like this. Things become so much clearer.”

Ariane is wife to Zach, and mother to Caroline (11) and Aiden (7). She’s talented, kind, funny, and strong. Like all mothers, she just wants to do the best possible job she can for her family. When I heard Ariane’s story through a mutual friend, as a mom and wife myself, I was immediately touched by it and in awe of her and her strength. Because yes, she’s a wife and a mother, but she just so happens to have had her son diagnosed with cancer at 3 years of age. Something hard for any parent to imagine. Even harder to grasp how one would get through it. In the following interview, Ariane shares a little about her journey, and it is our hope that it will help anyone else who might be experiencing something similar. That the joy and love of this family will serve as encouragement and inspiration.

“It was March of 2013 when he was diagnosed. For weeks prior to his diagnoses he kept saying ‘my tummy hurts, my tummy hurts’. He was never really a big eater, so no huge red flags there. He was tired, but he’d go to preschool and be fine. Then one day he had this big bloated belly, and we thought ‘hmm, that’s kind of weird’. But you know, we thought kids do that sometimes, they’re proportioned funny. Then one day it was really strange. Some of the bloating had gone down and there was a noticeable lump on his right side. I was actually at a meeting at work and Zach called me and said ‘I don’t feel good about this, something is wrong’. I said alright, let’s take him in. I came home from work, we took him to KidMed, who side note are high up on my list of ‘Hallejulah Thank God For Those People’. We went into KidMed and the doctor took an X-ray. Now looking back on it, it’s so clear. But at the time he took an x-ray and he put it up on the light so we could see it. It kind of hit us as being strange because all of his organs were squished up to one side. The doctor looked at us and said there is definitely a mass there. I’m calling VCU and you need to go right down to the emergency room. We thought ‘well, this is strange’. No one said cancer, they just said ‘mass’. And your mind doesn’t go there at first. I will never forget as we walked out of that place, the looks on the nurses faces. Now looking back, they all knew what it was. They knew it was bad. You could see it on their faces. We were just in such a hurry to get out, but Zach and I talk about it now and we look back and can see clearly how they knew.”

“We called VCU on our way, they knew we were coming. We went down there. It’s still kind of a blur, but they put him in the CT scanner. At some point somebody came up to us. We knew some of the doctors already because friends of ours down the street. Their little boy had Wilms Tumor and passed away. They’re very good friends. Their little boy was 2 when he was diagnosed and Aiden was just born. He lived 363 days after he was diagnosed. We got involved with the ASK Childhood Cancer Foundation in Richmond. They work closely with the hospital. Zach was on the board at the time. I was volunteering with the gala committee, we were planning fundraisers. And then all of a sudden, here we are with doctors that we know telling us our kid has Wilms Tumor. They’ve since said to us it was surreal for them, too. They couldn’t believe we were now in this. We were here at this point. I mean, that’s just it. It can be anybody. To have it be Wilms Tumor is just still one of the things that blows me away. Because our first experience with it is Tucker, our neighbor, and he passed away. So needless to say we were floored. Absolutely floored. Terrified. And they kept saying to us, and it sounds silly, but they kept saying if there is a type of cancer to have, if you had to pick, Wilms Tumor is the type you’d choose. Wilms Tumor survival rates are so good. And the treatment plans in the last 30 years have come so far. But none of that sinks in at the time. All you know is that your kid has a tumor the size of a cantaloupe inside of him and it’s cancer.”

“We stayed in the hospital 9 days. He had his whole tumor removed. They couldn’t save the kidney, it was too encompassed. They took them both out. The tumor weighed 2.2 pounds. In this little skinny kid. He came home after the 9 days. He had 14 rounds of radiation. He had to go every day down to VCU. They have to sit still for it and because he was so young, they had to sedate him. Every time I’d have to put him on this table. They put a port in during his initial surgery. So they’d access his port, and I’d have to watch them put my kid to sleep every time. Just the anesthesia alone is enough to give you a heart attack as a mother. To see your kid drift off to sleep every day for 14 days was tough. Then he started chemo the very first day. He was so sick that night. Throwing up, miserable. He couldn’t move without getting sick. I remember Zach and I looking at each other like ‘how in the hell are we gonna do this? Like, if this is it, how is he gonna do this. How is this gonna happen?”

“We went down the next day and they asked how he was. We said ‘he’s miserable. He’s sick, he’s been sick all night’. The nurses looked at us and all said ‘call us. From now on if he’s sick you call us.” They upped his meds, they gave us a better plan. They said ‘our goal is to have him as comfortable as possible’. We told them we didn’t know what to ask or to expect, and they reassured us they were there to help. So we got a good plan. It eventually got to the point where we knew, ‘ok, he’s had this chemo today, and so in 6 hours he will throw up once and be done’. Or for example this one type of medicine never really affected him at all. So we knew if that was the chemo that week, it was going to be fine. We could skate through that. It just all kind of revolved around what his cocktail of medicines were going to be each visit. We got to know them and their affects and what to expect. He had 25 rounds of chemotherapy over the course of 6 months. In the beginning it was 3 times a week, then 2 times a week until the end, then 1 time a week. They say you will get to a new normal, and it’s true. You just learn what your new normal is. You prepare and just hunker down for the night, knowing what to expect. But he got through it. He actually got to a point where he looked forward to going to clinic. He loved those nurses. He loved the doctors. He would sit in this recliner at ‘The Fish Bowl’ painted to look like you’re under water. And he’d be plugged into his medicine and they’d put an X-Box in front of him and let him just play video games for hours. He thought it was the greatest thing. Every time he left, he got a toy. And that is how all of those kids get treated. Their every whim is met. ‘You want a snack? Here’s a snack. You want candy, here’s candy’. I remember our oncologist saying to us don’t spoil him because you will create a monster. I looked at my husband and said I don’t give a shit, I’m going to spoil that kid, he gets whatever he wants. Well, six months down the road, he’s done and I remember saying to that doctor ‘I know you told me not to do this, but I did it and I created a monster (laughing) and I understand it now. It’s still worth it, but I understand it now (laughing)’.”

October 3rd. 

“October 3rd will be 3 years of being cancer free. Three years for Wilms is the big marker. They don’t worry as much. The chances of relapse after 3 years goes way, way down. Up until now, he was going every 3 months just to ensure it’s gone. We just got this last round of scans, and now they’ve moved us to every 6 months. Which, for me is good and bad. Every step you take away from a part of this, is like taking away a safety net. It’s equal parts happy and terrifying. We were getting MRI’s and CT scans every 6 months, and chest x-rays and ultrasounds the other 6 months (you alternate). You have this sense that someone is keeping an eye on what’s going on inside. But now that they aren’t doing this anymore, it’s great in one sense, but terrifying in another, because I have this feeling of ‘what if it comes back’. We’d have to wait 6 months to know instead of 3 months. We are so thrilled to be here, but it’s scary at the same time.”

How has this affected Aiden?

“He doesn’t remember a whole lot of the hospital part. He remembers the nurses and has his favorites. He remembers the good parts. He developed a reputation for loving bananas. He wasn’t allowed to eat before treatments, and when he’d wake up, he’d always want bananas and maraschino cherries. The chemo and the drugs affect their taste buds, and he started liking very potent things. His last day of radiation, the nurses brought him a bundle of bananas and a jar of maraschino cherries. He loved that.”

The Present. 

“He’s doing amazingly. He’s growing like a weed. He’s 7 now. He was 4 when he finished treatment, and 3 when he was diagnosed. He’s grown 2.5″ in the last 6 months. We hadn’t seen his original oncologist in a while. The last time we saw him he said ‘I wouldn’t recognize this kid if I saw him in the street’ because of how much he’s grown and changed. He said this is one of the best parts of his job, to see these kids grow up and thrive. This is something we certainly don’t take for granted. Every birthday. Every October 3rd is a great day. Every March 3rd I’m a mess (the day he was diagnosed). I can tell you day by day, night by night everything I did that first week. It’s still so fresh. A pediatric ICU is such a horrific place to be. And those nurses are amazing. They’re just…amazing. I about lost my mind a couple nights, and I remember those nurses helping me. One night, I think it was the first night we were back in the regular room after we had been in intensive care and it was kind of all sinking in. I was doing exactly what they tell you not to do. Don’t go on the internet. Don’t Google it. Don’t read x, y, z. And of course at 2am in the morning when you can’t sleep, what do you do? You go on the internet and Google it. I remember reading this story of this man who had it when he was young, and now he had all of these horrible symptoms as an adult from the treatment, etc. and I’m balling my eyes out. This nurse comes in, and just picks me up and hugs me. She puts my computer down and said ‘Aiden is Aiden. He’s not these other people. You can not let this stuff seep into your brain’. As I went through this journey, I started to realize she’s right. He is his own person. He took his own path. He has his own story. And his was thankfully ideal. If there is a ‘perfect’ way to do treatment, he did it. He never really got an infection or a fever where he had to be admitted to the hospital. I remember running into a nurse shopping one day and she said ‘I’m so glad I’m not seeing you’ (laughing). And it’s true. They’re happy you’re not there. They’re truly happy you’re doing well.”

“You don’t know what you’re made of until you get put through something like this. Things become so much clearer and your BS tolerance goes way down. I’m done with the drama. Our kids are doing good, so we’re good. You learn to get joy from the small, regular, everyday things. I’m thankful for that. I wouldn’t have had that were it not for this experience. I would still be trying to keep up with the Jones’ a little bit. Now having been through this I’m like ‘screw the Jones’. We are good’. We’re happy. We are having fun and having a great time. It’s all about authenticity. It’s very important to me now. Just being authentic and true to yourself, your family, your life, and to everyone else.”

What got you through it? What one thing do you look back to and say “I would not have made it without this”? 

“You just do what you have to do. It wasn’t about us. We had to get up, we had to do this. You just do it, you don’t have an option. There is no plan B. You do what the doctors say. You make the best of it. You find the strength somehow. Zach and I have been really lucky in our relationship in that it’s made us stronger. That’s not always the case for some marriages. You have to learn how to lean on each other. I remember watching Scott and Leslie going through it and observing that when one of them was down, the other was strong. They never both got down at the same time. I think that was what we did. If I was crying in the shower, he was the one helping me through it. Helping me put one foot in front of the other. And vice versa when he would get down and angry. You also lean on your family. We had so much support from our families. My parents lived here at the time and were here to help. When we told Zach’s parents they were on a plane immediately. Our friend Brian drove up right away. He went to law school with Zach. He stayed in the house and said ‘I’m just here to do what needs to be done. You need me to mow the lawn, go to the grocery store, you just tell me’. He didn’t give us a choice, he was like ‘I’m doing this’ and those are the kind of things that lift you up and carry you through. We live in great neighborhood and are close to our neighbors. They had been through this with The Armstrong’s and Tucker, and they were ready to support us and do this again. We got admitted that night at 9pm. By 11pm, word had spread and there were 5 husbands in our hospital room with bags of snacks, movies, blankets, games, etc. It was incredible. It was a blur, and I remember finally settling in and Aiden was asleep, and here come all these husbands I’ve know for 8 years. It was overwhelming. Those things are really meaningful and important. It was people insisting on helping, because it was really hard to ask for help. My personality is I’m very much an introvert. I like my alone, quiet time. I remember a friend showing up and saying ‘we are going to take Caroline and get our nails done and you stay here and relax’. That was great and so helpful.”

Guilt

“The sibling part was huge for me. It was a big source of gilt, because everything was so focused on Aiden 24/7. But I still had an 8 year old daughter who needed me just as much, but I couldn’t always be there. People understood that she needed attention too, and that was really helpful. Because I couldn’t do it all. I’m still trying to make up for it I think. It was those types of things where you can’t be in two places at once. It was a huge help to have someone step up and say “I will do this other thing for you.”

“It was really hard on Caroline. She was 5 when Tucker (our neighbor) passed away. She remembers all of that. It made a big impression on her. So then to be told your brother has the same thing. She was equally as terrified, but lacking the ability to communicate that. It definitely took a toll on her having to go through this with us needing to focus so much on Aiden. It’s normal to have a little bit of sibling rivalry I think, but she’s told me in the past ‘she felt invisible’ and that has been really tough for me. It breaks my heart. I’m working through that. I still don’t know if I could have done anything differently, but we are working through it. We make sure we have Caroline time. That we have things specifically for her, that she does. She’s an amazing kid. She’s fantastic. She kicked butt in elementary school. She’s going to be in all honors classes in middle school. We are so proud of her. We just continue to try to fill her up and pour love into her. She’s an incredible kid. She’s really involved in cheerleading now and loves it. It’s been really fun to watch her do something that is all about her. To see her have these successes.”

Do you ever feel like people have been placed in your path for a reason? I’m sure you feel this way about your neighbors. 

“Absolutely. We’ve had this conversation with Leslie and Scott. It very much feels divine. The whole thing feels bigger than us. Our stories and our lives – we absolutely feel like we got brought together for a purpose. I’m still working through the fact that we had a different outcome with Aiden than they did with Tucker, but they are the type of people who always say to us don’t ever diminish your joys. She has told me many times that they rejoice in our victories. That they want to hear them. It’s amazing for us to have them say that to us. They could be so angry and so bitter about their situation, but they’re just not. To have those be the kind of people that we’ve been leaning on has been amazing. They’re true examples. Their story is a huge part of our story. Our story would have been so different without their support. When I talk about our story, I can’t not talk about Tucker. They kind of go hand-in-hand, having gone through it with them. They’re intertwined. They’re just amazing. Awe-inspiring people.”

“We were also overwhelmed with messages and notes from people we had never met before, who were praying for our family. It was overwhelming…really powerful and moving. That is the one thing I still have a hard time talking about without getting emotional. You feel it lifting you up and carrying you through. Aiden had packages being delivered to this house daily. And Caroline, too. People would send boxes for both of them, letting them know they’re thinking about them and praying for them. It meant the world, it really did. It made it feel like we were not alone.”

Marriage

“Zach and I were fortunate in that we could lean on each other, and that it brought us together. I had strengths in things that he didn’t and vice versa. You start to look at your husband or wife with a new appreciation. Like when you have kids, and you see your partner in a new light. It’s the same. Here is your husband cleaning up vomit off the floor. No hesitation going into it, you just keep rolling and doing. You sit down and take a deep breath and look at each other and think ‘ok, let’s just keep going, keep pushing through’. You have to figure out how to communicate. I was never very good at that prior. This whole process forced me to say ‘I am feeling X today’ or ‘I need you to do this today’. It really forced the communication between the two of us. We’re definitely stronger on the other side of this. We learned how to communicate better and work as a team.” (Ariane and Zach have been married 14 years this past May, together for 16 years this coming November).

How has this changed you as a Mom?

“Ha, a lotta, lotta ways. You learn what you are made of. Being a mom, you’re used to putting yourself last. Get everyone else taken care of first is kind of how you think. That is the general kind of ‘mom thing’, you know? Having been through this and having experienced such love and support being sent my way, it has really made me want to be the kind of person who reciprocates and gives that love and support back. Maybe a little self-centered was how it was before, whereas now, when I tell people ‘please, tell me how I can help and what I can do’, I wholeheartedly mean it. I really want this to be easy for them. I find myself wanting to help people and give back. Whereas, I will be honest, it was not my inclination before. (Editors note: Ariane is one of the nicest people, so for her to say this, you have to know her bar was already set really high). To be on the receiving end of that love and support, I really want to help. As I mentioned before, I would so much rather the spotlight of this interview not be on me, but if this helps one person or they can take something away from this to help their journey, then that’s amazing. What we do as mom’s on a regular basis is incredible, because we are building people. I tell my kids, ‘my job is to raise you to not be an a-hole. You need to be functioning, purposeful, good people’. Having been through something like this, all of that other kind of stuff and noise in the background falls away. Your goal becomes clearer. I tell my kids I love them every single day. And that they are important and I’m proud of them. I try to do that with my friends and my family. Letting someone know I’m thinking about them. Just to shoot someone a text and say ‘I’m thinking about you’ or ‘I hope you’re having a good day’. Just those kinds of things, to be uplifting and positive, is something that I’ve kind of walked away with from this.”

At the start of our conversation you said that in a way this has been a blessing. You clearly see a silver lining. Would you say this puts things into perspective for you? 

“Oh absolutely. And it’s a kind of perspective that I want everyone to have. Like, if there was a way to get to this point without ever having to go through something like this, everyone would be better for it. But I don’t think you can get to a point like this, without having gone through something like we did. Whatever it is. Doesn’t have to be to this extent. And we know we are lucky. We watched kids battle 2, 3, 4 years. And some of them loose. We are SO lucky. His treatment was textbook. He is doing amazingly well. We are SO blessed, and so lucky. And we know that, and we appreciate it. We don’t ever take it for granted.”

What were your lowest and highest points? I ask so that if someone else is going through this, that person can connect with your experience and get an ‘I’m not alone’ feeling from this. 

“That night sitting in the hospital, reading all of that stuff about Wilms Tumors survivors. You just want to know what’s it going to be like and what to expect. You want all the answers. They say that the radiation can affect their growth. That they may be shorter by a couple of inches. They may be sterile. He may never be able to have children. It was doing all the things they tell me not to do, and that was my lowest point. Sitting there and wallowing in the ‘he may never do this or he may never do that’ thoughts. Instead of saying, ‘we have to do what we have to do to keep him here in the present’. And now, I tell people we fought our asses off to keep him here. I don’t care if he’s gay, straight, never has kids, whatever. At the time it was ‘why is this happening’ and being sad over the thought of he’s never going to do x, y, and z instead of thinking he’s going to be on the other side of this and he’s going to be alive. And it took months just to say ‘I would just be happy if he’s here’. You get out of that wallowing and the ‘why me’ and the ‘why him’. No one deserves this and you get past that and you just have to roll with it and be positive. It’s one day at a time and that’s what we would do. We’d get up, say this is today. You get up, you take a shower, you get dressed, you put on make-up if it makes you feel better, and you have a day. My mother gave me great advice. She said ‘do not let him see you having a bad day’, and that was good for us. I remember one of the nurses saying to us ‘you always look so put together when you come here’ and I laughed and said it was because my mom told me to put make-up on and get dressed everyday. Because if it were up to me, I would kind of be here in a hot mess, with glasses and a bun. The nurse agreed though. She was like ‘you’re right. You need to just pull yourself together and do what you need to do’.”

“The high is just seeing him as a kid now. If you didn’t know his story, you’d never know what this kid has been through. And I love that. I love seeing him just being a regular kid, and being happy. He does have times when he gets what happened to him. He still has his port. He took it to school for show and tell. He was so excited to show people. It’s made him stronger. It’s the kind of strength he will grow into. As he gets older and really realizes what he’s been through, he will ultimately be a better person for it. That’s my hope at least.”

What would you tell yourself six months into this journey and others going through it now? 

“Just…take it one day at a time. You can do it. You DO have the strength to do it. People say ‘I can’t do this’. There is no ‘I can’t’. You can. For sure. You will get through it one day at a time no matter what happens. You will get through it.”

Was there a moment where you felt like you’ve ‘won’? Where you made it to the other side? 

“In the last 18 months I feel like I can take a deep breath and start to put this behind me. Being able to get through this conversation without balling is a big victory (laughs). There are lots of little ‘big’ victories for sure. I don’t think it has to be one big one, or if there is just one. I think there are lots of little ones. I’m definitely more confident and comfortable in my own skin, as a human being, now. It’s super important to be a whole, complete human being first, so that I can be a good mom and a good wife, and a good daughter and friend, and all those things. I’m getting there.”

Thank you to Ariane, Zach, Caroline, and Aiden for letting me tell your story.
All images shot on a Contax 645 or Canon EOS 3 35mm camera with Fuji 400h, Portra 400, and Portra 800. Film scanning by Richard Photo Lab.