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My last blog post was right before Tori passed away in May. I haven’t been able to write since. No words seem to do her justice. I can’t get it right. But here’s my best attempt because after all, I did make her a promise.
Parker was getting chemo, and I got a text from Tori's mom, Dawn. They were at the hospital. Tori had a fever, and they thought it might be pneumonia. Her platelets have been low for a while, and Dawn was worried about that too. I thought to myself, “Oh, she’ll get transfusions and antibiotics and be fine.”
Tori was only a few treatments away from finishing chemo. She was considered cancer free.
A little later in the day, Dawn sent another text. Lots of doctors were in there. Tori’s WBC was over 230,000. She was very sick.
“I’m scared.” Dawn said in a text message.
“Do you want me to come down to the room?”
I left before getting a response. If it were me, I'd want somebody there for the support. I told Parker that I’d be right back, and marched down the hall towards Tori’s room.
I stood outside of her room watching all of the commotion in absolute confusion. What could have possibly happened in the 2 minutes between text messages? Her room was surrounded by hospital staff, no one else could fit inside. Dawn emerged, looking stunned. She came towards me and all we could do was hug. I don’t even remember if we said anything. Within seconds, they brought Tori out of the room still in the hospital bed, with a nurse on top of her holding a mask. Wide eyed, I just watched. She was still breathing...but what was going on?
“Let me know if I can do anything,” I said, not sure what to say, as they rushed to the PICU.
I was now scared too.
I returned to Parker’s room.
I must have been visibly shaken.
“Is everything okay?” Parker asked holding his puke bucket. He had just gotten sick, and I felt bad that I couldn’t be in two places at once.
“Yes,” I said, “They’re taking Tori to PICU. She’ll get some medicine and be back on this floor by the time we leave.”
After all, Parker was in the PICU after surgery and the next day we were back on our normal floor and things were okay. Surely this was going to be the case with Tori too.
“I’m taking a shower,” I told him.
The shower had become my way of coping and not crying in front of him. Anytime I was scared, I’d take a shower. The hot water calmed me down. Anytime I wanted to cry, I’d take a shower. I didn’t want anybody to see the tears, especially Parker. The shower was my go to.
I think it was the next day…it’s all a blur. Dawn came down to the room. She needed to get away. Tori was really sick, but she was hanging on. She hadn’t been awake since they took her upstairs except for maybe a minute or two. The situation was scary, but I was in still in complete denial. She was going to be fine. I convinced myself of this.
Dawn and I walked around the hospital and talked. We didn’t want to scare Parker. Dawn hadn’t showered or eaten, that’s the last thing you think of when your daughter is that sick. She hadn’t slept either. She updated me on Tori. They were doing lots of tests and had her receiving lots of medicine.
I remembered the day I met Dawn and Tori. It hadn’t been long since that day. We stood outside of Parker’s room in the hallway. Tori walking with her IV Pole and Dawn standing next to her. We talked about the rash on her stomach and her dislike for the lotion they gave her for it. She’d rather itch. She laughed. She was bright and energetic. There was a light around her.
She was known for being feisty and brazen. She was the type of girl I loved. Full of strength and fight. Look at her wrong, I dare you. You’ll get a look back twice as bad. She could throw shade! But when I met her, she was funny and happy.
Of course, I wasn’t waking her up every 2 hours to go to the bathroom or poking her with needles!
As we were standing there, Tori noticed that Dawn had something in her teeth. Dawn brushed her off and ran her tongue over her teeth. We continued to talk. “It’s still there!” Tori said with a laugh. “TORI! STOP!” Dawn chuckled back. Dawn used her finger this time as a make shift toothbrush to try to get rid of whatever was in her teeth. I hadn’t even notice anything in her teeth. We kept talking. “It’s still there!” Dawn was embarrassed. I thought it was funny. This family was great. You could just tell.
Parker came out of his room for just a few minutes to say hi. He is usually quiet but was more so after just getting medication to battle nausea. It made him sleepy.
Tori made a big enough impact on him though. After they met, Parker promised to try to go to an activity, but only if Tori was going too. Before, he would tell the child life volunteers “maybe” when they asked him if he wanted to join them for activity. He was less than convincing though, and he never went. He and Tori never got the chance to go together.
That wasn’t that long ago.
Now I found myself walking Dawn back to the PICU. Her bright, funny, energetic daughter, now too medicated and too sick to stay awake.
The next day, I sat with Dawn and Tori’s dad, Eddie, up in the PICU family lounge. We talked about the first time we met, the lettuce in Dawn’s teeth, and how embarrassed Tori had made her. We laughed a little. We sat a lot in silence, staring into the distance.
“Look. A rainbow.” I said. I smiled.
Dawn and Eddie just stared out the window, holding each other. It was a brief moment of tranquility.
“It’s a sign,” I told myself. Tori is going to make a turn for the better.
The next day, Parker was getting discharged. Dawn came down to the room, and we went on another walk. She told me that her family couldn’t find the movie “Coraline” and that she wanted to play it in Tori’s room because Tori loved that movie and she’d watch it on a loop. It was all the little stuff like that building up and overwhelming her.
“I’ll look for it!” I told her, “I’ll go to Walmart before we head back to the Quad Cities.”
I made it my mission. I wasn’t going to look for it. I was going to find it!
My mom and I went to Walmart. We emptied one of those bins that has one million, three-hundred and seventy-two thousand, five-hundred and sixty-three movies in them. Or so it seemed. The worker in electronics thought it might be in one of those...
It wasn’t.
We got lots of stares as we piled up the movies all around the bin. We must have looked like crazy people. I was going to find that movie. Just not at Walmart. I called Best Buy and Target. No luck.
Then I got another idea. Family Video. I’ll buy it from them.
I had to create an account and "rent" the movie. I asked the cashier how much it was to buy it, and he said I couldn’t buy it. I told him “Okay, but I’m not bringing it back. It’s for a young girl in the hospital.” They’d take care of it he said, and I left with the $1.99 movie.
VICTORY WAS MINE!
I took the movie back to the hospital. Dawn was not there. She made a quick trip back home to grab some things and see her other kids, but I could take it to Eddie. He was in Tori’s room. I walked to the PICU and stopped at the desk.
“This is for Tori,” I said. I was hoping to take the easy way out.
“You can take it back,” she said, “the family is all back there.”
I didn’t want to press the issue, so I reluctantly walked to her room.
I saw her. Laying there. Peaceful. The only noise was the repetitive sounds of the machines around her and sniffling coming from her dad. Eddie was sitting at her side with tears streaming down his face. I handed him the movie. Unable to speak. I felt as if I had a cement block lodged in my throat. I couldn’t swallow.
“Dawn said she likes this movie,” I choked out.
“Thank you,” Eddie whispered, his head hanging down as though he had been defeated. It was obvious he was utterly exhausted.
I looked back at Tori. Tubes, lines, machines, medicine. So much was going on. She looked so small. I wanted to hug her. Instead, I spoke to her in silence. I told her I was so sorry she had to go through this. I told her to get better. And I quickly left.
I cried until I couldn’t breathe in the bathroom and then I brushed it off and joined my mom and Parker who were waiting in the hallway. The drive home was quiet. I no longer felt the joy of my movie victory.
It was the last time I saw her alive. A few days later, she was gone.
AML. Acute Myeloid Leukemia. It had ravished her body. She was so close to the end of treatment. What a cruel, cruel reality. She beat Ewing’s only to get a secondary cancer that she didn’t even get a chance to fight.
This should have never happened. She should be here with Parker. They were going to be childhood cancer advocates. Together. Doing things to raise awareness and funding for a cure. Together. They should be celebrating their end of treatments in 6 months. TOGETHER.
I was angry. And sad.
I tried putting myself in Dawn’s position. I tried to think of something I could do, something I could say, but nothing was enough. Nothing could bring back Tori. I could just be there for her. By her side.
I was also very selfish. I thought about Parker. I thought that Dawn’s reality could, in fact, be my own reality too.
Tori was a fighter. She was strong. And yet cancer still took her life.
The reality is cancer can take anyone. Even Parker.
If the cancer doesn’t, the treatment could. It’s entirely possible, and likely, that the chemo Tori received caused the AML. Chemo that is over 30 years old and should be outdated by now. This is the best we can do for our children? NO. I don’t believe that. But we’ll save that for another post.
I thought I felt fear the day Parker was diagnosed, yet I still had a sense of deniability. That was gone. The fear was now palpable.
Every night for months, I opened his bedroom door and watched for his chest to rise and fall before I could fall back asleep. Most nights, it still wasn't enough and I wasn’t able to sleep. That’s what fear of this magnitude does.
A few days later, I sat at a 24 hour diner in the middle of the night planning a 14 year old’s funeral with her mom whose eyes were swollen and black underneath from crying and lack of sleep. We talked about music and readings. She told me stories about the pictures that she would display at the visitation. One was a picture that Tori drew when she was just 3 or 4 years old. It was a drawing of a butt and she had written, "My Ass" on it. We laughed. WE LAUGHED! And we cried. I felt like I was dreaming. I can’t even begin to imagine how Dawn was feeling. I was taken aback at her strength and her drive. She was doing it all for Tori, to make her funeral special and honor her memory. It was the same strength Tori had shown.
Dawn and I met a couple of times before the visitation, and I thought I was prepared. I don’t like crying in front of people. I don’t know why. There’s nothing to be ashamed of. But I still tried to tell myself that I wasn’t going to cry. I was going to be strong.
Well let me tell you something, that’s crap, and I was wrong. There’s nothing strong about not crying. Crying doesn’t show weakness, it shows you’re sad. And what’s so bad about being sad that a 14 year old died? It's completely normal. I wasn’t just sad though, I was devastated.
As I waited in line at the visitation with Parker and my mom, I couldn’t even look towards Dawn and Eddie without tears filling my eyes. So I looked in every other direction. They had a slideshow of pictures playing on a TV. We watched pictures of her with her siblings flash across the screen. We watched picture after picture of Tori during treatment. I watched Parker smile a tiny smile as they showed a picture of him and Tori from Parker’s benefit just the month before. They had come to show their support.
We watched her younger sisters twirl in the curtains and run to greet family members and familiar faces. We watched her brother as he sat on a couch, looking off into the distance. Lost.
We got closer. I wasn’t ready for this. I wasn’t ready to face her parents. I wasn’t ready to see her surrounded by flowers in her casket.
I was next in line to give my condolences to her parents. I quickly realized I had been wrong again. There was no preparing for this. The tears flowed.
I was going to shake her dad’s hand. Instead, Eddie embraced me in a huge hug. Words didn’t need to be spoken, but as two cancer parents, I understood. He was comforting me! He hugged Parker and gave him words of encouragement as I hugged Dawn.
“I’m all cried out,” she said. She looked beaten, exhausted. I don’t know how she was still standing.
“I’m so sorry,” I said, “I’m so so sorry.”
I again silently spoke to Tori as we walked passed her, stopping briefly. I told her I’d watch after her family. I’d do everything I could to make sure they were okay. I’d also be her voice. I’d continue her fight against cancer. Lastly, I asked her for a favor. I asked her to watch over Parker. I told her I knew that it was selfish, but the only angel I wanted for Parker was her. I knew she'd fight for him.
The next day we went to her funeral. As I sat waiting for it to start, I was looking around and saw the picture Tori had drawn of her butt and written "my ass" on. I laughed a little. A laugh that was so out of place, but so welcome. I don’t have words to describe the funeral. I remember not being able to believe I was really there. That it was all a dream. I can’t even begin to imagine how her parents felt. It turns my stomach just thinking about it. Saddened for their loss doesn’t even begin to express it.
We arrived at the cemetery and watched as they unloaded the casket from the hearse. Parker joined her friends to lead the casket as an honorary pallbearer. I watched him hobble on his crutches alongside the casket, and it’s a moment I’ll never, ever forget.
Parker doesn’t talk much about it. The strength he showed was amazing though. 13 and facing the reality of the situation proved to be difficult. Here he was, fighting the same cancer that Tori had.
He never told me entirely what they talked about at his benefit, but I’m glad he got the chance to get to know Tori, even if only a little bit.
The funeral was beautiful. It was a time of mourning, but it was also a time of great love. Dawn and Eddie did a wonderful job honoring Tori’s memory.
Tori, we love and miss you. Thank you for showing Parker what a fighter truly is, and thank you for watching over him. Telling your story is step 1 to my promise. My voice for childhood cancer advocacy is only getting started. I have hope that someday, no child will have to go through what you went through. Their lives will not be cut short. We will not fail them like we failed you.
Parker was getting chemo, and I got a text from Tori's mom, Dawn. They were at the hospital. Tori had a fever, and they thought it might be pneumonia. Her platelets have been low for a while, and Dawn was worried about that too. I thought to myself, “Oh, she’ll get transfusions and antibiotics and be fine.”
Tori was only a few treatments away from finishing chemo. She was considered cancer free.
A little later in the day, Dawn sent another text. Lots of doctors were in there. Tori’s WBC was over 230,000. She was very sick.
“I’m scared.” Dawn said in a text message.
“Do you want me to come down to the room?”
I left before getting a response. If it were me, I'd want somebody there for the support. I told Parker that I’d be right back, and marched down the hall towards Tori’s room.
I stood outside of her room watching all of the commotion in absolute confusion. What could have possibly happened in the 2 minutes between text messages? Her room was surrounded by hospital staff, no one else could fit inside. Dawn emerged, looking stunned. She came towards me and all we could do was hug. I don’t even remember if we said anything. Within seconds, they brought Tori out of the room still in the hospital bed, with a nurse on top of her holding a mask. Wide eyed, I just watched. She was still breathing...but what was going on?
“Let me know if I can do anything,” I said, not sure what to say, as they rushed to the PICU.
I was now scared too.
I returned to Parker’s room.
I must have been visibly shaken.
“Is everything okay?” Parker asked holding his puke bucket. He had just gotten sick, and I felt bad that I couldn’t be in two places at once.
“Yes,” I said, “They’re taking Tori to PICU. She’ll get some medicine and be back on this floor by the time we leave.”
After all, Parker was in the PICU after surgery and the next day we were back on our normal floor and things were okay. Surely this was going to be the case with Tori too.
“I’m taking a shower,” I told him.
The shower had become my way of coping and not crying in front of him. Anytime I was scared, I’d take a shower. The hot water calmed me down. Anytime I wanted to cry, I’d take a shower. I didn’t want anybody to see the tears, especially Parker. The shower was my go to.
I think it was the next day…it’s all a blur. Dawn came down to the room. She needed to get away. Tori was really sick, but she was hanging on. She hadn’t been awake since they took her upstairs except for maybe a minute or two. The situation was scary, but I was in still in complete denial. She was going to be fine. I convinced myself of this.
Dawn and I walked around the hospital and talked. We didn’t want to scare Parker. Dawn hadn’t showered or eaten, that’s the last thing you think of when your daughter is that sick. She hadn’t slept either. She updated me on Tori. They were doing lots of tests and had her receiving lots of medicine.
I remembered the day I met Dawn and Tori. It hadn’t been long since that day. We stood outside of Parker’s room in the hallway. Tori walking with her IV Pole and Dawn standing next to her. We talked about the rash on her stomach and her dislike for the lotion they gave her for it. She’d rather itch. She laughed. She was bright and energetic. There was a light around her.
She was known for being feisty and brazen. She was the type of girl I loved. Full of strength and fight. Look at her wrong, I dare you. You’ll get a look back twice as bad. She could throw shade! But when I met her, she was funny and happy.
Of course, I wasn’t waking her up every 2 hours to go to the bathroom or poking her with needles!
As we were standing there, Tori noticed that Dawn had something in her teeth. Dawn brushed her off and ran her tongue over her teeth. We continued to talk. “It’s still there!” Tori said with a laugh. “TORI! STOP!” Dawn chuckled back. Dawn used her finger this time as a make shift toothbrush to try to get rid of whatever was in her teeth. I hadn’t even notice anything in her teeth. We kept talking. “It’s still there!” Dawn was embarrassed. I thought it was funny. This family was great. You could just tell.
Parker came out of his room for just a few minutes to say hi. He is usually quiet but was more so after just getting medication to battle nausea. It made him sleepy.
Tori made a big enough impact on him though. After they met, Parker promised to try to go to an activity, but only if Tori was going too. Before, he would tell the child life volunteers “maybe” when they asked him if he wanted to join them for activity. He was less than convincing though, and he never went. He and Tori never got the chance to go together.
That wasn’t that long ago.
Now I found myself walking Dawn back to the PICU. Her bright, funny, energetic daughter, now too medicated and too sick to stay awake.
The next day, I sat with Dawn and Tori’s dad, Eddie, up in the PICU family lounge. We talked about the first time we met, the lettuce in Dawn’s teeth, and how embarrassed Tori had made her. We laughed a little. We sat a lot in silence, staring into the distance.
“Look. A rainbow.” I said. I smiled.
Dawn and Eddie just stared out the window, holding each other. It was a brief moment of tranquility.
“It’s a sign,” I told myself. Tori is going to make a turn for the better.
The next day, Parker was getting discharged. Dawn came down to the room, and we went on another walk. She told me that her family couldn’t find the movie “Coraline” and that she wanted to play it in Tori’s room because Tori loved that movie and she’d watch it on a loop. It was all the little stuff like that building up and overwhelming her.
“I’ll look for it!” I told her, “I’ll go to Walmart before we head back to the Quad Cities.”
I made it my mission. I wasn’t going to look for it. I was going to find it!
My mom and I went to Walmart. We emptied one of those bins that has one million, three-hundred and seventy-two thousand, five-hundred and sixty-three movies in them. Or so it seemed. The worker in electronics thought it might be in one of those...
It wasn’t.
We got lots of stares as we piled up the movies all around the bin. We must have looked like crazy people. I was going to find that movie. Just not at Walmart. I called Best Buy and Target. No luck.
Then I got another idea. Family Video. I’ll buy it from them.
I had to create an account and "rent" the movie. I asked the cashier how much it was to buy it, and he said I couldn’t buy it. I told him “Okay, but I’m not bringing it back. It’s for a young girl in the hospital.” They’d take care of it he said, and I left with the $1.99 movie.
VICTORY WAS MINE!
I took the movie back to the hospital. Dawn was not there. She made a quick trip back home to grab some things and see her other kids, but I could take it to Eddie. He was in Tori’s room. I walked to the PICU and stopped at the desk.
“This is for Tori,” I said. I was hoping to take the easy way out.
“You can take it back,” she said, “the family is all back there.”
I didn’t want to press the issue, so I reluctantly walked to her room.
I saw her. Laying there. Peaceful. The only noise was the repetitive sounds of the machines around her and sniffling coming from her dad. Eddie was sitting at her side with tears streaming down his face. I handed him the movie. Unable to speak. I felt as if I had a cement block lodged in my throat. I couldn’t swallow.
“Dawn said she likes this movie,” I choked out.
“Thank you,” Eddie whispered, his head hanging down as though he had been defeated. It was obvious he was utterly exhausted.
I looked back at Tori. Tubes, lines, machines, medicine. So much was going on. She looked so small. I wanted to hug her. Instead, I spoke to her in silence. I told her I was so sorry she had to go through this. I told her to get better. And I quickly left.
I cried until I couldn’t breathe in the bathroom and then I brushed it off and joined my mom and Parker who were waiting in the hallway. The drive home was quiet. I no longer felt the joy of my movie victory.
It was the last time I saw her alive. A few days later, she was gone.
AML. Acute Myeloid Leukemia. It had ravished her body. She was so close to the end of treatment. What a cruel, cruel reality. She beat Ewing’s only to get a secondary cancer that she didn’t even get a chance to fight.
This should have never happened. She should be here with Parker. They were going to be childhood cancer advocates. Together. Doing things to raise awareness and funding for a cure. Together. They should be celebrating their end of treatments in 6 months. TOGETHER.
I was angry. And sad.
I tried putting myself in Dawn’s position. I tried to think of something I could do, something I could say, but nothing was enough. Nothing could bring back Tori. I could just be there for her. By her side.
I was also very selfish. I thought about Parker. I thought that Dawn’s reality could, in fact, be my own reality too.
Tori was a fighter. She was strong. And yet cancer still took her life.
The reality is cancer can take anyone. Even Parker.
If the cancer doesn’t, the treatment could. It’s entirely possible, and likely, that the chemo Tori received caused the AML. Chemo that is over 30 years old and should be outdated by now. This is the best we can do for our children? NO. I don’t believe that. But we’ll save that for another post.
I thought I felt fear the day Parker was diagnosed, yet I still had a sense of deniability. That was gone. The fear was now palpable.
Every night for months, I opened his bedroom door and watched for his chest to rise and fall before I could fall back asleep. Most nights, it still wasn't enough and I wasn’t able to sleep. That’s what fear of this magnitude does.
A few days later, I sat at a 24 hour diner in the middle of the night planning a 14 year old’s funeral with her mom whose eyes were swollen and black underneath from crying and lack of sleep. We talked about music and readings. She told me stories about the pictures that she would display at the visitation. One was a picture that Tori drew when she was just 3 or 4 years old. It was a drawing of a butt and she had written, "My Ass" on it. We laughed. WE LAUGHED! And we cried. I felt like I was dreaming. I can’t even begin to imagine how Dawn was feeling. I was taken aback at her strength and her drive. She was doing it all for Tori, to make her funeral special and honor her memory. It was the same strength Tori had shown.
Dawn and I met a couple of times before the visitation, and I thought I was prepared. I don’t like crying in front of people. I don’t know why. There’s nothing to be ashamed of. But I still tried to tell myself that I wasn’t going to cry. I was going to be strong.
Well let me tell you something, that’s crap, and I was wrong. There’s nothing strong about not crying. Crying doesn’t show weakness, it shows you’re sad. And what’s so bad about being sad that a 14 year old died? It's completely normal. I wasn’t just sad though, I was devastated.
As I waited in line at the visitation with Parker and my mom, I couldn’t even look towards Dawn and Eddie without tears filling my eyes. So I looked in every other direction. They had a slideshow of pictures playing on a TV. We watched pictures of her with her siblings flash across the screen. We watched picture after picture of Tori during treatment. I watched Parker smile a tiny smile as they showed a picture of him and Tori from Parker’s benefit just the month before. They had come to show their support.
We watched her younger sisters twirl in the curtains and run to greet family members and familiar faces. We watched her brother as he sat on a couch, looking off into the distance. Lost.
We got closer. I wasn’t ready for this. I wasn’t ready to face her parents. I wasn’t ready to see her surrounded by flowers in her casket.
I was next in line to give my condolences to her parents. I quickly realized I had been wrong again. There was no preparing for this. The tears flowed.
I was going to shake her dad’s hand. Instead, Eddie embraced me in a huge hug. Words didn’t need to be spoken, but as two cancer parents, I understood. He was comforting me! He hugged Parker and gave him words of encouragement as I hugged Dawn.
“I’m all cried out,” she said. She looked beaten, exhausted. I don’t know how she was still standing.
“I’m so sorry,” I said, “I’m so so sorry.”
I again silently spoke to Tori as we walked passed her, stopping briefly. I told her I’d watch after her family. I’d do everything I could to make sure they were okay. I’d also be her voice. I’d continue her fight against cancer. Lastly, I asked her for a favor. I asked her to watch over Parker. I told her I knew that it was selfish, but the only angel I wanted for Parker was her. I knew she'd fight for him.
The next day we went to her funeral. As I sat waiting for it to start, I was looking around and saw the picture Tori had drawn of her butt and written "my ass" on. I laughed a little. A laugh that was so out of place, but so welcome. I don’t have words to describe the funeral. I remember not being able to believe I was really there. That it was all a dream. I can’t even begin to imagine how her parents felt. It turns my stomach just thinking about it. Saddened for their loss doesn’t even begin to express it.
We arrived at the cemetery and watched as they unloaded the casket from the hearse. Parker joined her friends to lead the casket as an honorary pallbearer. I watched him hobble on his crutches alongside the casket, and it’s a moment I’ll never, ever forget.
Parker doesn’t talk much about it. The strength he showed was amazing though. 13 and facing the reality of the situation proved to be difficult. Here he was, fighting the same cancer that Tori had.
He never told me entirely what they talked about at his benefit, but I’m glad he got the chance to get to know Tori, even if only a little bit.
The funeral was beautiful. It was a time of mourning, but it was also a time of great love. Dawn and Eddie did a wonderful job honoring Tori’s memory.
Tori, we love and miss you. Thank you for showing Parker what a fighter truly is, and thank you for watching over him. Telling your story is step 1 to my promise. My voice for childhood cancer advocacy is only getting started. I have hope that someday, no child will have to go through what you went through. Their lives will not be cut short. We will not fail them like we failed you.
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