‘He looked at me screaming, helpless because he felt they were torturing him. All mommy could do was hold him tight, but not stop them. The room caved in on me. I wasn’t ready.’

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“I’ve never felt a room so small and caved in on me until the emergency room visit that would change my life forever. The resident working that night came in to tell me that after the x-ray, and the ultrasound, and the labs, that this in fact was cancer. She apologized that this was the news that she had to deliver, and she wished it wasn’t. Just hours prior to that, I had thought it was a swollen spleen because they said there’s a possibility it could be that. I would’ve taken that over the actual diagnosis any day. My heart sank into my stomach and I just wanted to fall to my knees and cry.

After feeling like someone just punched my chest in, and it caused my heart to fall into my stomach, I told myself they were wrong. I was in the most denial I had ever been for awhile. While I’m sitting on the chair next to his bed crying my eyes out, I pick up his little hands and start kissing them. You would think after fighting side by side with my husband 4 years ago when he was battling brain cancer, that I would know how to handle it this time around. I did not. This time it was my own seed, my only son, and I was brought down to my knees asking God, ‘Why Solomon? Why are we going through this again?’

Courtesy of Leni Lutui

He was sound asleep after watching ‘Big Hero 6’ for the fourth time since we got there that evening. He had no idea he would be fighting the biggest fight of his life for the next 8 months. I couldn’t take being in that room alone anymore. I texted my sister right away and told her the news. She was in utter disbelief and told me to shut my mouth, that is a cruel joke to even try and play. I told her I wish I was joking.

Less than half an hour later, she and my then brother-in-law walked in. She just held me and we cried together, didn’t even say one word to each other. We just looked at each other and cried. Now, we were both holding his hands. She was holding his left, and I his right hand. At that moment, I knew we had to gather ourselves and be strong for him. For if he woke up, he would look at both of us and wonder what’s going on and why we were crying like there was a funeral going on.

Courtesy of Leni Lutui

To think that just that afternoon I had taken him to his pediatrician with no knowledge of what was to happen later on that evening. It was a quick visit because right when his doctor walked in and had him lay down on the exam table, she looked at his stomach bulging out on the left side and told me to go straight to Seattle Children’s Hospital. She was going to give them a heads up that we were coming. I hadn’t been to the emergency room at that hospital ever. I’m the type of parent that unless you’re dying, I won’t take you in. I will do all I can at home to prevent a visit to the emergency room. This visit became the first of many that would soon turn this hospital into our second home for the next 8 months. Everything happened so fast after that. We ran a biopsy on him so that we can identify the exact type of cancer he had. We didn’t find that out until a few days later, then we met with our oncology team. They sat down and laid it all out for us. Everything they prepared us for, happened as it would. Solomon didn’t understand why we were there for so long, and when we would tell him he was sick, he didn’t understand what kind of sickness kept him there for so long.

Courtesy of Leni Lutui

One thing after another, we placed a port in his chest so they could continue to draw blood from him every time they needed labs. They also placed a feeding tube inside of him through his nose and then down his throat to his tummy. That was the worst. He looked at me screaming, helpless because he felt they were torturing him and all mommy could do was hold him tight, but not stop them. Chemotherapy treatment started right after the diagnosis came back that he had Demoplastic Small Round Cell Tumor.

Courtesy of Leni Lutui

I remember May 11, 2018, like it was just yesterday. All my siblings were gathered at the hospital that morning with my oldest. We had bought puzzles, coloring books, even brought the portable speaker to play music and jst make him feel like home was brought into his room at the hospital.  Once the nurse came in to hang up his chemotherapy medicine, we all just paused and looked at each other. It felt like we were all about to get chemo injected into our blood stream.

At the time, Solomon wasn’t introduced to Michael Jackson yet. He was into Justin Bieber, and he asked my sister to play his song, ‘Never Say Never.’ Once that came on he just started moving his body to the beat while coloring a picture, so we moved to his tune of forgetting what the nurse came in to do. His chemotherapy ran for about an hour for each medicine and then it was over. The hard part was a few days later, when the side effects of the treatment would hit and we were at home at the time. I started to see my overly active 4-year-old at the time shift into a little boy that I didn’t know. He lost all energy to do anything. He couldn’t even answer me when I would ask simple questions. I would wake up in the middle of the night to him feeling nauseous and vomiting all the food that was going into his tummy from the feeding tube. All these things they told us would happen, was happening, but I wasn’t ready.

Courtesy of Leni Lutui
Courtesy of Leni Lutui

I’ll never forget one night he was laying on the couch, lifeless, and no one in the house could get him to say one word all day. His big sister came and kneeled down by the couch and started talking to him, asking him something so random, but funny just to get a reaction. It was just a simple head nod, but it was the most he’d given us all day. She said, ‘Solomon, do mommy’s feet stink?’ I can’t say why she came up with that, but it seemed to work. He smirked and nodded yes, and she asked him if his feet stinks. He said, ‘No.’ She then grabbed a notepad and asked him to write something. He got up the strength, while still lying down to write his name. They then started talking about ogres and how their breath stinks. What felt like a day of being defeated, actually became a day of thankfulness. Thankfulness for the little triumphs in this fight. The hardest time was at the beginning of all this, it was all so new to us. And we were still learning how to adjust to our new life with Solomon this way. He started to love these long impatient stays, it felt like a staycation, but at the Children’s hospital.

Courtesy of Leni Lutui

Towards the end of treatment, it did get rocky again. He was having more frequent runs to the emergency room and those kept us at the hospital for long stays. And we started to make it a habit where we were there on all the holidays including Halloween, Thanksgiving, and almost Christmas, but they were kind enough to let us go home and spend that with our family and then come back to finish his last chemotherapy treatment the day after Christmas. One thing we did always have when we’d go in for appointments, or these stays, was Solomon’s bright spirit. It’s like once you told him to dance, he would. Like everything else going on in the world just paused while he danced his little life away during the fight of his life. You would’ve never known this kid was sick because he just transformed into a little dancing machine anytime we walked into that hospital.

He became a light of hope for me. I had lost that when his dad passed away 4 years prior to brain cancer. That was a tough battle because with his dad’s diagnosis, they always said it would come back, and when it did it would take his life, and it did. Solomon was only 10 months old when that had happened. I’ve never known a much stronger human in this world, but the one I call my son.

Courtesy of Leni Lutui
Courtesy of Leni Lutui

When I sat in that room back in May and asked why we had to go through this again, I now know. We were assigned that mountain to prove to others that it can be moved, with a light of hope, faith and love. We are on the road to recovery and living life again, but with more strength and thankfulness for all that we have gained in these past 8 months. Never stop dancing, that’s how we kept going.”

Courtesy of Leni Lutui

This story was submitted to Love What Matters by Leni Lutui of Seattle, Washington. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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