As we kick off the new year, my guest Christiana is sharing the story of her son’s osteosarcoma. Nathaniel has passed away, but his family created Nathaniel’s Childhood Cancer Foundation in his name and legacy. Christiana walks us through his experience with osteosarcoma from the beginning, and she shares details about his battles with childhood cancer.

In this episode, we talk about…

[1:27] Introducing Christiana and her family

Christiana has been married to her husband for eight years, and they have been together for fifteen years. They both grew up in Arizona, and they have a daughter together named Destiny. Christiana’s son, Nathaniel, was born on March 17, 2004 – her little leprechaun. 

[3:09] The beginning of Nathaniel’s story with osteosarcoma

In August 2011, Nathaniel was seven and it was the day before he was supposed to start second grade. He came to Christiana that evening complaining that his wrist hurt. It was swollen, but Christiana thought he was trying to get out of going to school the next day. She took him to the ER, and the doctor thought it was probably just a sprain. She advised taking him home and icing it, as it wasn’t hot to the touch. When Christiana pointed out that it was hot to the touch, the doctor did a scan just to make sure. About twenty minutes later, the doctor came back into the room with several other medical professionals. Another doctor told Christiana that it looked like her son had a cancer called osteosarcoma.  

Christiana was only 24 at the time, and she was shocked. She didn’t know what to do.  She realized her phone was dying, so she asked if she could run to the car quickly to get her phone charger. She needed to call her parents and her now husband to let them know what was going on. When she went outside, it all hit her.  She was looking up at the stars on that clear night and begging God for it not to be cancer. 

She composed herself and went back into the room, where her son was screaming because the nurses were trying to draw his blood. Christiana started making calls to her family, and when she walked back into the room the doctor could see she had been crying. When he asked the other doctor what had been said, he made it clear that they couldn’t say it was definitely cancer at that point. They could say that was what it looked like, but without a biopsy they couldn’t say for sure. It ultimately was cancer, but that thought got Christiana through the next couple of weeks while they waited for more answers.

The next day, Christiana called Nathaniel’s pediatrician who got them in right away. He was a huge support for Christiana, and she knew she could count on him.  The plan was for Nathaniel to get the biopsy, and the other needed scans to confirm or rule out cancer. He needed to have those done to get a better look at what they were dealing with because an x-ray doesn’t show a whole lot.

When Christiana first called to make the appointment, they told her that the first opening was a month out. Luckily they had a cancellation, and Nathaniel ended up getting his scan a couple days after that initial ER visit. They also had to wait for an appointment at Phoenix Children’s Hospital. About a week and a half after the ER visit, Christiana’s mother was watching Nathaniel and she called Christiana worried that the swollen area on his arm was getting bigger. She called the pediatrician right away and he sent them back to the ER for another scan. When the scan was done, he said that it looked like it had grown a little and sent them to PCH to be admitted through the ER. 

[11:49] Nathaniel’s osteosarcoma diagnosis

A couple days after they got there, Nathaniel’s biopsy results came back. Christiana waited for the doctor all morning, and she finally saw her walk by. She went up and asked if she had the results, and the doctor said she would be in to talk to them shortly. Christiana could feel that it wasn’t good news, and they ended up calling her and her family out of the room and sending a nurse into the room to play with Nathaniel while they talked. The doctor told them that it was osteosarcoma and that they would be moving him to the cancer floor of the hospital. Christiana would have to meet with an oncologist there to start discussing options and treatment.

They were initially shocked, and Christiana is the kind of person who needs to deal with and process these things alone. She tried not to let her son see her cry because she didn’t want him to be afraid or feel responsible for her emotions. She went down to the lobby and sat by a statue that would hide her away and cried and asked what she could do. In that moment, Christiana heard God tell her in her heart that it wasn’t over. Those words brought so much comfort to her, knowing that Nathaniel had cancer but it didn’t have to mean that he was going to pass away. She had to put her faith in God.  

She was able to pull herself together after that, and when she got back to Nathaniel’s room they had already started to load everything up to move him to the other side of the hospital.

[14:32] How Nathaniel reacted to these sudden life changes

At first, Nathaniel didn’t know much about what was going on. Christiana’s father didn’t want to tell him, because he wanted to protect him. Christiana felt like they had to tell him, because he was going to start to feel sick and he was going to lose his hair. A child life specialist helped Christiana tell Nathaniel about his cancer and what treatment would look like going forward. He was seven years old at the time, so he didn’t know what everything meant but he accepted it as others told him about it.

Christiana described him as “a little adult in a tiny body”.  He was wise beyond his years, hilarious, and he could make light of any situation. Nathaniel never felt too sick, and he spent a lot of his time laughing and playing video games. In November, they had to re-evaluate his wrist to see if they could save it or if they were going to have to amputate it. Nathaniel never complained about his circumstances, but it did get harder for him after they amputated in November of 2011.  

Christiana and the oncologist had to explain to Nathaniel that the cancer was only in his wrist at that point, and the chemo they were using hadn’t been effective.  They needed to amputate below his elbow. When the doctor gave them some time by themselves, Nathaniel processed with Christiana that he was going to lose his arm. She told him that it would be better for him, and that they would get rid of the cancer and be able to keep him here. Nathaniel shed two tears, wiped them away, and said that they could do it. He said, “It doesn’t matter. My hand hurts anyways and I don’t need it.”  He was always so strong, and Christiana knew God was helping him. He handled the difficult news with such grace.

[18:52] What was helping Christiana through her son’s cancer battle

Christiana shares that her family and God helped her tremendously during this time. She was only 24 when Nathaniel was diagnosed with cancer – she was a baby herself. There were times that she felt terrified, and when she did she would pray for God to give her peace and to help her and Nathaniel through it.  

[21:02] Health insurance and hospitals

A couple days after they moved Nathaniel to the cancer floor at PCH, Christiana’s insurance called and told her that the hospital was not in network and she would have to take him to Tucson. Christiana had already fallen in love with the doctors, the nurses, and the resources available to him at PCH. She didn’t want to move.

Soon after they got that news, however, Christiana received a phone call from someone at the insurance company who told her that, although PCH was out of network, she could take her son to whatever hospital she wanted and the insurance company would pay for it. Christiana was so thankful.

[23:01] Nathaniel’s experience after amputation

After the amputation, Nathaniel went through a different type of chemo. He did that treatment for a few months, and in March of 2012 a scan found a small tumor on one of his lungs. They went in and removed that, and he continued treatment until July 2012. At that point, they considered Nathaniel to be in remission. He was supposed to get scans every three months or so. Around January 2013, a scan showed another tumor on his lung so they removed it. His next scan was right before Christiana and her husband got married, and it was clean. At the end of June into early July, Nathaniel went to Camp No Limits, for children who were missing limbs. They get to play with other children in similar circumstances, and they learned things like how to tie their shoes.

When they left the camp, they were already in California so they made plans to go to LegoLand and SeaWorld. On July 2, 2013, they went to LegoLand and had a great time. On July 3, 2013, they were getting ready to go to SeaWorld. Christiana was in the shower and her mother came in saying that Nathaniel wasn’t responding. It turns out he was having a seizure, and they called an ambulance.   

While they were in the ambulance, they were trying to decide which hospital to go to. Finally, they landed on Rady Children’s Hospital. They did a scan when he arrived, and when the results were ready the doctors called them out of Nathaniel’s room. He had a brain tumor.

Christiana called Nathaniel’s oncologist to let him know what was going on, and at that point they were admitting him because he needed to have surgery. The oncologist offered to fly Nathaniel back to PCH for them to do the surgery, but Christiana felt like they were supposed to be at Rady. They traveled eight hours to another state and it could have happened anywhere, but it happened there. The surgeon at Rady was the surgeon who trained the one at PCH, and Christiana wanted to stay there.  

[28:06] Finding out that Nathaniel’s cancer had spread

The doctors at Rady decided to do a full body scan, and they found tumors in his hip, his foot, and his lung. The oncologist told them that the cancer had spread and there was no point in doing the surgery. She wanted to send them home.  Christiana lost it at that point, because she felt like God was telling her to be at that hospital and they wanted to check Nathaniel out. She went into another room and cried. This was another time when God told Christiana that it wasn’t over.  

About an hour later, another doctor came in and told Christiana that they respect the oncologist’s opinion but the team felt that Nathaniel still needed surgery. They weren’t going to send them home until they got the brain tumor out.

They stayed at Rady another couple of days after Nathaniel’s surgery, and then they went back and he was admitted to PCH so they could address the next steps.  Nathaniel had another surgery on his lung, and he had radiation on his hip as well as on his head to make sure the brain tumor wouldn’t grow back. His oncologist told Christiana that the chances of osteosarcoma going to your brain was less than 1%, so they never scanned his brain. They don’t know exactly when he got it, and they weren’t sure if it was osteosarcoma or something else. 

[32:13] Getting fitted for a prosthetic and accessing video games post-amputation

Nathaniel loved video games, and after his amputation he started to seem more depressed. He would watch YouTube videos of other kids playing video games instead. He did get excited when Christiana suggested getting fitted for an arm, but when he got there he realized that it wouldn’t be just like his real hand. The hand just opens and closes, and Christiana could see the defeat in his face.

Christiana also looked to see if anywhere in Phoenix could make Nathaniel a custom controller so he could play video games. The place she found usually made custom controllers in the sense that they would change out the plates and make them pretty, but they talked to him and told him that it was going to be okay. They gave him a bag and a beanie, and the whole way home Nathaniel talked about how nice they were and how they would help him and everything would be okay.  

When they got home that night, Nathaniel picked up his regular controller and started playing one-handed. He ultimately never had to order a custom controller, because he taught himself to play with one hand.

[35:11] Treatment after radiation

Nathaniel had radiation on his head and his hip for a couple months, and then they found another tumor in his lung. When they went in to get this one, unfortunately they cut too close to the tumor and it burst in his chest. They tried to get all the cancer cells out, but that is difficult to do. They cleaned it out as best they could, but after that it spread like wildfire.

By the time November 2013 came around, Christiana felt like maybe they needed to call off the treatment and try to get him some pain medicine to make him comfortable. She also continued to pray for a miracle.  

[36:19] Nathaniel’s last days

On December 7, Christiana noticed a bunch of popped blood vessels in Nathaniel’s leg, and his hospice nurse told them that his organs were starting to shut down. She thought he had maybe a couple of days left. Nathaniel was sleeping all day long at that point, and Christiana told God that she would live with whatever happened. If God wanted to take Nathaniel, though, she asked for him to wake up so she could see him and hear his voice again.

A couple days later, Nathaniel woke up and the first words out of his mouth were “root beer”. He wanted root beer. He had some really good days, and even up until the day he passed away, Christmas Eve 2013, he was awake most of the day. He wasn’t in a lot of pain.

That evening, Nathaniel started having trouble breathing. Christiana knew in her heart that this was it, and she called his nurse. It started around 8:15, and by 8:47 Nathaniel passed away. She remembers putting his oxygen on, and she refused to cry at that moment. She did not want him to be scared. Christiana talked him through it as they waited for the nurse, and she just knew when Nathaniel left.

When she knew he was gone, Christiana cried. She begged God to send him back healed, and she prayed for around 30 minutes before coming to the understanding that it was not going to happen. She remembers telling God she was never going to hear Nathaniel say “Mom” again, and at that moment she had a very clear vision of Nathaniel. She couldn’t hear anything going on around her, and she saw him standing on a cloud with someone who she knew was Jesus. Nathaniel was yelling, “Mom! Mom!” and when he saw her looking at him he waved. He had both hands, and he was happy.  

[40:28] Nathaniel’s Childhood Cancer Foundation

Nathaniel’s story is not over. Christiana started Nathaniel’s Childhood Cancer Foundation, and he loved orca whales so the logo sports one. They are focused on raising awareness for childhood cancer, and they hope that one day September is as big for childhood cancer as October is for breast cancer. The foundation also provides bags of fun things for children battling cancer so they can stay occupied in their hospital rooms. There are the standard Warrior Packs and the custom Warrior Packs.  For children in isolation who can’t have therapy dogs come in or go out into the playroom, they want to provide something like an iPad or Nintendo Switch so they can use them in their rooms. They also provide Protector Packs to recognize the siblings of children with cancer.

Connect with Christiana:

Website

Instagram

Facebook

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