2 years ago, I planned to make a visit to the pediatric floor of the hospital where my dog Jake and I volunteered. This time, though, we didn’t plan to visit the kids. Jake had a torn ACL and needed surgery so I wanted to let the child life office know that we wouldn’t be able to volunteer for at least 4 months. I hadn’t planned on taking Jake in with me, but because he was clean and seemed to be getting around ok, I decided last minute to take him. When we arrived, we headed straight to the child life office to explain our situation only to be stopped by the hospital’s social worker, who was in the process of trying to find a therapy dog to visit a special patient who was in desperate need of a 4-legged friend. We were happy to help out and Jake seemed up for it. The visit went well and reminded me of how much I was going to miss coming in to visit the kids with Jake. Afterwards, we met with the child life therapists and explained Jake’s situation. On our way out, we walked past the nurse’s station and I noticed that the room across from it that usually had a caution/ no visitors sign didn’t have one posted that day. I thought that this might be one of the few times the child in this room would be able to receive a visit from a therapy dog. So I knocked on the door. When no one answered I peeked my head in. Jake did too.
There were two beds in the room, one was empty except for a pile of beading supplies and machines set up all around it. The other was a low bed with a little boy sitting on it. He had big round eyes, a perfectly smooth, round head, and the sweetest little smile with a hint of mischievousness behind it. I was about to ask if he would like a visit when Jake took charge and unexpectedly pulled me through the door. He took both of us by surprise when he proceeded to climb into the bed and lay his huge head in the boys lap. I apologized, explaining that Jake has NEVER done anything like that before. I’ll never forget the look on the boy’s face, the sweet little smile getting bigger, the twinkle in his big round eyes and in his sweet southern accent replying “it’s OK, dogs like me.” That was the day I met the seed for Never Give Up, Ever, Inc. His name was Dustin Cobb.
That day, Jake and I spent an hour getting to know Dustin while Jake lay in bed with him getting his ears rubbed the whole time. We talked about the box of supplies and endless containers filled with beads on the empty bed and a zip lock bag full of beautiful beaded bracelets. We found out that Dustin Cobb was making and selling bracelets for $5/pc to raise money for neuroblastoma research, a deadly form of childhood cancer; his cancer. I was amazed that a 9-year old boy would be so motivated to make all these bracelets and sell each one of them only to give every cent away. Today I still own the first bracelet I ever bought from Dustin. It is more valuable to me than a diamond bracelet.
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Only 3% of the National Cancer Research budget goes to childhood cancer research. Of that 3%, none goes to neuroblastoma research. The number of deaths caused by neuroblastoma now rivals that of childhood leukemia. Government funding doesn’t take the number of years lost by a child with cancer, only the number of kids who get cancer.
Dustin Cobb was raising money for his research because he had to. Many of the families who have children with neuroblastoma are not only faced with a grim diagnosis but the reality that there is little to no funding from outside sources for their child’s cancer. It is a diagnosis of hopelessness.
Dustin very quickly became a beloved member of our family. After Jake’s surgery, he called every day for a week to check on him. About a month after we met, I had picked Dustin up at the Ronald McDonald house to get some ice cream. While we were driving, there was a lull in the conversation and Dustin surprised me by telling me that he had a good friend who “passed” from the same cancer he had. He said this with his head pointed straight ahead, but I could see that he was looking at me from the corner of his eye. I told him I was sorry and asked if he missed him. He said he did. After another pause, I got nervous and asked him what his favorite ice cream flavor was. He said “chocolate”. About two weeks later, on our weekly trip for ice cream, Dustin told me again about his friend who had passed from neuroblastoma. Again, his head was straight forward but I knew he was waiting to see my reaction. This time, I was a little more brave and said “that must have been really sad for you, where do you suppose he is now?” Dustin replied “ Heaven”. I said “ me too”.
I was never sure why Dustin told me about his friend. He never brought him up again. Sometimes I think that he was telling me this because he was trying to warn me that some day this might happen to him. Maybe he wanted to know if that would change my wanting to spend time with him.
I was never sure why Dustin told me about his friend. He never brought him up again. Sometimes I think that he was telling me this because he was trying to warn me that some day this might happen to him. Maybe he wanted to know if that would change my wanting to spend time with him.
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In the months that followed, we have incredible memories of our time with Dustin. Happy times filled with laughter, ice cream, soccer games, movies, bracelets; always more bracelets. There were also some not so incredible memories like when we watched him suffer through neuropathy pain in his legs and back. I’m not talking about aches and pains that are soothed with advil, I’m talking excruciating pain that would leave him begging for us to make it stop. Only once did I hear him cry “its not fair”. That time I cried too. He was right. It’s not fair.
In June, my family left for a month long trip that would take us up the east coast by boat. Being away from Dustin was harder than I ever imagined it would be. We spoke every day to let him know where we were and what we were doing, and to tell him that we loved and missed him. We counted the days when we would see him again. One day Dustin called me crying. He had never done that before so I was really worried. He was having his tubie (central line) put in. And he hated that. I told him he was the strongest guy I knew, that I was sorry he had to keep having this done, and that I wanted him to call me when it was over to tell me how it went. When he called back it was a phone call I will cherish the rest of my life, because it was the first time he told me he loved me.
In early July, Dustin’s mom called to tell me that he was having trouble with his kidneys and that the Doctors had started to talk to her about making plans. She was angry. She told me she had been living on hope for 7 years with this disease and they couldn’t take that away from her now. As long as he was here with us, she would continue to hope.
1 week later, Dustin’s mother called again, this time to tell me that Dustin’s kidneys had started to fail. She knew I needed to see him. I caught a flight from New York to go home, and that same evening, Dustin boarded a helicopter for a flight over beautiful Lake Champlain at sunset with his mother and doctor at his side. He was given a heroes send off from the hospital staff and the many friends he had made during his stay here. They all proudly wore their sparkling bracelets. I made it home and went directly to the hospital in time to say good-bye. Dustin slipped away at 9am the following morning.
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Dustin raised $3000 for neuroblastoma research selling $5 bracelets that he made himself. 600 bracelets. He never stopped beading even during his sickest moments, even when he started to lose vision in one of his eyes. He only stopped when he lost the use of one of his hands and could no longer hold the beading wire in one hand and string the beads with the other.
Meeting Dustin with Jake that day in the hospital room across from the nurse’s station turned the course of my life. He is the seed that blossomed into Never Give Up, Ever, Inc.
While what Dustin did with his bracelets was therapeutic for him in many ways, no child should feel that their money is what is needed to keep them alive. I think Dustin believed that as long as he could keep making and selling bracelets for research money, he would keep living.
In his spirit, Never Give Up, Ever, will continue Dustin’s fight to end childhood cancer by raising the money needed to keep this research moving forward until a cure is found.
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