That Time the Doctors Thought My Kid Had Lymphoma

January 15, 2016 — 47 Comments

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It happened the summer of 2013, and I’ve never written about it because I get agita just typing the title.

“Agita” is a New York expression. It comes from the Italian word for “stomach ache,” but New Yorkers use it to mean terrible agitation or anxiety. It’s like me saying “that skeeves me” when something is gross, or immediately using the expression “mothah fuckah” when I drive. New York style, with the “er” dropped.

 

Little Dude was in sleep away camp August of 2013. When the Ex and I went there on visiting day, my kid was in the infirmary. He had some kind of virus that was causing him agonizing stomach pain.

Kids get sick at sleepaway camp. They catch stuff from each other; from the woods, from the lake. He’s come home from there with impetigo, which totally skeeved me. But this was serious – more serious than something to be treated in the camp infirmary. We piled blankets and pillows in the car, and drove my son home.

In rapid succession, we went from the pediatrician’s office to the ER to having him admitted to the hospital.

In between bouts of excruciating stomach pain, my son was completely lethargic. His was drained of all color and had a steady fever. He couldn’t even hold down fluids.

I spent that night with him in the hospital. It was a horrible night for both of us. There’s nothing that makes you feel quite as helpless as watching your child suffer brutal pain.

Early the next morning, the doctor arrived to examine my son. As she was feeling his abdomen, I detected a flicker of something in her expression. She asked my Ex and me if we could speak to her in the hallway.

“I’m going to have him transferred by ambulance to a specialized hospital, where they have a pediatric lymphoma clinic. I want him seen by the pediatric oncologist there.”

THE WORST WORDS A PARENT CAN EVER HEAR.

PEDIATRIC ONCOLOGIST.

My feet gave out from under me. I would have plummeted to the floor, but my Ex was holding onto my arm, so I did a slow slide down, and collapsed there. I began hyperventilating. There wasn’t enough oxygen in the hallway and I was suffocating. Tears streamed down my face.

The doctor knelt down to eye level with me.

“Are you going to ride in the ambulance with him?” she asked.

I nodded.

“Then you need to pull yourself together for him. He cannot see you like this.”

She was not unkind, but she was businesslike. She understood that in that moment, what mattered most was keeping my son from being terrified.

We formulated a plan of what we were going to tell him (“we need to go to a bigger hospital, they want different doctors to check you, you’re going to ride in an ambulance! How cool is that!”)

Shit like that. Shit you say to a 10-year-old kid, instead of “We have to go to a pediatric oncology ward because you might have lymphoma.”

 

I spent the next five days and nights in my son’s hospital room. I never left. My Ex went back and forth, grabbing a shower and some fresh clothes each day, and I probably should have done that. A hot shower might have helped clear my mind. But the drive to my house and back was about 90 minutes, and that was too long to be away from my kid.

One minute was too long to be away from him.

My bestie drove down from upstate New York to sit with me. She got there just in time to see me go all Shirley MacLaine / Terms of Endearment on the nurses when my son was howling and convulsing with pain, and I screamed at them to give him intravenous morphine.

Doctor after doctor examined him. They administered every test imaginable. On two different occasions the doctors brought in groups of interns to speculate as to what he had. I felt like I was in an episode of House, only with way less sexy doctors.

The first two days, Little Dude was so gravely ill he couldn’t watch television or even speak to me. That’s when I was the most terrified. Little Dude never shuts up.

SOMEONE PLEASE PLEASE TELL ME WHAT IS WRONG WITH MY CHILD.

 

I found myself making deals with God. “Please, let me have cancer and not my son. Please.

 

My kid went through hell before they eventually diagnosed him with mesenteric lymphadenitis. It’s an inflammation of the lymph nodes in the intestines. The virus he’d contracted was so severe, his lymph glands had swelled to where the pain was intolerable. They weren’t even sure how he’d contracted it, since not one single other camper had it. After five days, he was released.

I’m not being dramatic when I tell you that I would not want to live in a world without my son.

 

Not every parent is this lucky.

 

Dorian Murray is an 8-year-old boy who has spent half his life bravely battling rhabdomyosarcoma. It’s a rare pediatric cancer, and his treatments are no longer working. Shortly after New Year’s, he decided to spend his remaining time with his family

His dying wish is to be famous, even in China. And thus the #DStrong movement began.

All over the world, people are taking pictures holding up signs to show Dorian that he has found his way into our hearts.

DStrong

Me and Little Dude

 

Rachel of www.misfitsmountainmama.com reached out to some of her writing friends and asked us to flood the internet with Dorian love and BLOW THIS HASHTAG UP!

Tweet to #DStrong that you’re rooting for him! Take a picture if you’re so inclined. Share his story. Read about him on Facebook. 

If you’d like, please write something inspired by this badass little warrior.

Whatever you do, you can join up us with the #DStrong linkey thing on Darla’s blog. 

 

Tonight, hug your children so, so tight. And never let go.

xoxoxo

 

Talk to me. I’m listening. 

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47 responses to That Time the Doctors Thought My Kid Had Lymphoma

  1. 

    The only thing that kept me from ugly crying is that I’m at work. I am so thankful that little dude keeps on keeping on. I am glad you are here too.

    Thank you for passing this along..I hope Dorian is comforted by this. So very fucking sad.

  2. 

    I wish you and your family the best of luck

  3. 

    What a nightmare you all had to live through. How grateful you must be for your happy ending. Thank you for passing Dorian’s story on.

  4. 
    Faith, trust, and pixie dust January 15, 2016 at 1:19 pm

    I just read this and I started crying. This is exactly why I want to be a pediatric nurse in oncology. Both of my grandpas had lymphoma. But I love children. I’m so glad little dude was okay and didn’t have cancer 🙌🏻 I’m also glad that you had the incredible strength you have for your kid! I can’t wait to have kids and see that ever flowing love between a child and their mom. I look up to your relationship with little dude. I wuv you thing 2!!!

    • 

      A pediatric nurse in oncology is a REALLY tough job. My brother was one. He got so burnt out after awhile. I give you lots of credit.

      I love you too! Glad we had a chance to catch up last night. xoxox

  5. 

    Simply too sad for words. Tweeted love from an Ohio mom to #DStrong.

  6. 

    What an ordeal you went through with Little Dude. How scary, Samara! I’m so glad he recovered. This is a cool thing you’re doing for Dorian.

  7. 

    I can only hug you. (( ❤ ))

  8. 

    *shudders* I remember this, Precious. I remember how completely helpless I felt. I can’t believe it was so long ago! I’m SO SO GLAD he’s alright and that he’s a strong, healthy young man. And I’m so glad you shared this story in solidarity with Dorian, whose family won’t get to keep him, but who I hope are buoyed by just how much the world has taken him to heart.

    • 

      I hope the #DStrong movement gives them some kind of tiny comfort. It’s the worst thing imaginable.

      Yes, this was the worst of times. Helpful in giving me perspective, though. xoxoxo

      • 

        Yes, very, but still something I wish you could have not gone through. That said, it’s given you empathy in ways you wouldn’t have had otherwise, so there’s that… *HUGS*

      • 

        thank you, dear Lizzi. Of all my online friends, you know Little dude the best, and truly understand the depth of my love for him. You always make me feel so appreciated, as a mom. So thank you.

      • 

        You only have to meet him or talk to him or hear about him to know how well you’re doing at raising him into a kind, thoughtful, compassionate, caring young man, who LOVES BOOKS, and is just…amazing in so many ways. I’m so glad of both of your presences in my life. Truly ❤

      • 

        We had a conversation just yesterday about books. I was explaining to him that some of my students never read, because they just don’t enjoy it.

        He could NOT wrap his brain around that. He kept debating and discussing this, telling me it makes no sense because there are so many kinds of books.
        It was adorable.

      • 

        Oh bless his boots. He’s right though! I have a hard time understanding that some people don’t enjoy reading.

  9. 
    elainemansfield January 15, 2016 at 9:16 pm

    Scary, scary, scary. I’m so grateful it wasn’t cancer. I can almost imagine how scared you were because your writing takes me there. Sometimes we get to dodge the bullet. With a kid, it’s so horrible when the dx goes the other way. Whew! Makes me appreciate my sons.

  10. 

    All is well that ends well. Though those five days must have been so terrible for you , you got a closure. God bless your son and you.

    Yeah many people are not lucky. God bless Dorian.

    Kids are dying from cancer. An alarm from nature that how we are disturbing her. May we check ourselves.

    But kids dying of hunger is the worst………

  11. 

    Ahhhh shit that tore me up……thank you geezus for keeping little dude here. So sorry and my eyes are leaking and I am grateful for my boy sleeping upstairs and now I want to rush out the door to get my girls who had a sleepover last night. They make us so vulnerable……..

  12. 

    Having a child in the hospital is so horrible. Sorry you had to go through this

  13. 

    WTG Little dude … when you can walk away from something like that, it’s a good day.

    Not on Twitter so I’ll just send good thoughts (and my GPS location) through the ethers.

  14. 

    How petrifying, Samara! Thank God he recuperated and all was okay. When I was 25, doctors thought I had leukemia and after the results of my bone marrow biopsy came out negative, my tough and strong father broke down in front of all of us and almost fell to the floor from relief. I’ll never forget that day and can appreciate it more now that I’m a mom. I can’t imagine what Dorian’s family is going through. Sigh. #DStrong

    • 

      OMG, that is a horrible story! You must have been terrified, too, since you were too old to hide this from.
      What stories you have! I guess this is why we write. xoxo

  15. 

    That is fucking terrifying. Holy shit. So glad everything ended up on the better side.

  16. 

    I so get you! When my daughter was 18-months old, she got a boil on her butt – when the doctor tested it, it came back with some weird bug that only kids with cystic fibrosis or leukemia get. Since it presents in the lungs of cystic fibrosis patients, he told me he thought she had leukemia and sent me to a specialist at the university hospital. One of the worst things I had to live through was watching my baby get a bone marrow test. They put her under and still she moaned with pain when they stuck that needle in her hip. We were lucky – she didn’t have leukemia – instead it was something called neutropenia, which was a lack of the primary white blood cell, neutrophils. It was still potentially serious, as her body didn’t have white blood cells needed to fight off bacterial infections. But again, we were lucky – she never had a hospitalization and when she reached her teens, the condition resolved on its own. But yeah – I remember that feeling of thinking my kid might die – it’s horrible.

    • 

      Watching your kid be subjected to painful tests – the WORST. You feel so helpless!

      I’m sorry you went through this. Maybe, this is why we write? Writing through trauma.
      Thanks, Jana. I was just on your blog. I need to go back and leave a comment. xoxo

  17. 

    Been there, done that. I get it. Won’t bore you with the details. Kids are kids, love is love, fear is fear. This is a great post….#DStrong!!!

  18. 

    Wow. There is no worse hell than having a sick child. I’m sorry for what you went through. Thank God this story had a happy ending. It really puts everything else in perspective.

  19. 

    Powerful post. Thank you for sharing. When my Husband had terminal cancer he said I can stand it better that I have it rather than one of our sons. Losing a child or watching your child suffer with a serious disease or disability is horrible. So glad that your story had a happy ending!

  20. 

    I can’t imagine what it must have been like, emotionally, as a parent— you want to do everything you possibly can, but can’t help much but just be there, which can make the experience more painful having to watch him suffer.

    SO glad he was— all of you— were able to walk out days later with a virtual clean bill of health… extreme pain, but… over.

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