At this very moment, my friend, Lori, is in Philadelphia with her nine-year-old son, Justin. They’ve been traveling all over the United States trying to get rid of effing cancer. Justin has been to Denver, New York, Michigan and now, Children’s Hospital of Philadelphia in hopes of eradicating neuroblastoma. Let’s pray this time it works.
Justin and Ben have the exact same disease: Neuroblastoma, Stage IV, high risk for relapse, unfavorable tumor, with the nmyc gene “unamplified.” This means minimal to the average person but to us, it’s terrifying. The one benefit of Ben and Justin’s identical diagnoses is that the nmyc gene is unamplified. This generally means that the neuroblastoma isn’t as aggressive. Most children with advanced NB have an amplification, which makes it tougher to battle because it spreads like freaking wildfire.
So, when Lori and I first met, we took that imaginary breath that stated “it could be worse.” However, where my Ben has relapsed just one time, her Justin has relapsed FIVE times. They get it under control only to have it come right back. Ben and Justin were on the same study in NYC. In fact, while we both live here in Aurora, CO, we happened to see them more in NYC at the Ronald McDonald House. We were traveling that much.
Ben and Justin both love video games and Legos so they would often hang out with each other and play. Justin is a couple of years younger than Ben, but they are both old souls. They get along very well. They don’t talk about their cancer. They just go in with the understanding of “Hey, this crap doesn’t define us. Let’s just be kids and play some Wii.” Lori and I would sit there and do the worrying for them.
My lovely Lori. She has incarnated nearly all her nine lives with so many relapses. She remains positive and keeps up the fight. Like me, her marriage didn’t work out. Having a chronically sick child does that more often than not. But, we have to trudge on. And she does that better than anyone I’ve ever met. She’s definitely on my “most admired” list, because I’m not sure how I’d handle what she’s going through right now.
Justin is in a lead-lined room receiving high doses of MIBG radiation. This means he’s alone. His mother can’t hold him. His mother can’t comfort him. He has to care for himself. Now, I don’t know about my other friends with children, but asking a nine-year-old to care for himself – when he is SICK – is ridiculous. My heart is breaking.
I kinda know what he’s going through. In 1993 I had thyroid cancer. After my surgeries to remove all the tumors, I was given high doses of radiation and stuck in a lead-lined room. No visitors. Everything I took in with me had to be destroyed as contaminated waste. I took in a lot of magazines and watched a lot of television. I was violently ill and in a lot of pain. But I was 25. I could take care of myself. This little boy is alone. His mother can see him but she’s totally helpless when he throws up repeatedly. She can’t wipe him off. She can’t hold him in her arms. She can’t cuddle on the bed with him. She needs that so very much, but he needs it more. To take away his right of having his mommy, well, that’s so very cruel. Unfortunately, their options are so limited at this point because his disease is becoming resistant to every other treatment currently available.
When I was released from my isolation, the hospital staff told my mother not to hug me and to keep her distance for at least a couple of days post-release. There were a lot of crazy rules that had to be followed, but my mom called bullshit. She said, “You’re releasing my daughter after a week of isolation and I’m not supposed to hug her? Are you crazy?” Then she ran to me as I was still in my hospital gown (I had no clothes with me because they would have had to have been destroyed as contaminated waste) and hugged me like never before. Everyone needs their mommy when they’re sick. Even when they’re 25.
So, Lori, only a couple of days to go, my friend. I cannot imagine the torture you’re experiencing and how tight you’re going to hug him when he can finally come into your arms. I mean, what’s a little residual radiation, right? You already glow with love for your sweet Justin, a little radiation will make you glow that much brighter. 🙂
I’m here. We’re here. We all want Justin to be completely healed and for you to get to hold him for the rest of your lives. My heart hurts so much for you both right now. I know you’re tired. I know Justin is tired. But I’m praying this therapy is the answer you so greatly deserve.
Him having to take care of himself while he’s violently ill and her having to helplessly watch has been eating at me all morning 😦
Agreed, Gina. I cannot imagine what they’re both going through.
Tears today for Lori and Justin. Great post, Sarah. I can not wrap my brain around this. Lori Ahern, you and Justin are in our prayers.
All my love and vibes to Justin…. may angels watch over you young one, as this treatment is the answer to the many prayers from your mothers heart. ❤
Rough treatment, but proven benefits for many. Send Lori and Justin some love for me. Hoping this treatment is THE ONE for Justin!
Shelly, he’s done MIBG once before with really good results so hopefully this will work again. Eden went to Vermont for this, didn’t she?
Nope she was at CHOP for MiBG. She didn’t get sick at all from it. She said it was B O R I N G! She went to Vermont to see Dr Scholler before she moved to MI.
Ah. Ben is on Dr Sholler’s study now but he’s doing the satellite study in KC
Eden was in the first phase of nifutimox, back when Dr S was just becoming known to the NB world. Giselle is the next generation of miracle worker!
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