I’ve been hiding.

And I haven’t been fair to you.

A few months ago, I stopped updating Cameron’s Caring Bridge blog. I let all the people who have been following him, who care about him, pray for him and love him know that I was taking it down and that if they wanted to follow him, they could check out this very website, Cams High Five. And then I ghosted them.

I haven’t posted in months. I haven’t updated anyone, I’m barely present on Facebook and when people ask me how he’s doing IRL, I tend to say, “fine”.

That’s because most of the time lately, he’s not doing fine. I don’t want to talk about it. I don’t want to face the fact that he’s really, really sick right now. I don’t like to “bring down the room”, as Brady calls it. I don’t like to feel like a whiner, I don’t like to cry when it’s not my turn, I don’t like to try and explain the medical details of how this can be happening to my baby.

So, I avoid. I dodge.

And that’s not fair to you. You who are reading this, who purposely signed on to get these posts because you love my little boy…I did you a disservice. And I’m sorry. Yes, Cam is mine, but he’s yours, too. From the very beginning of this journey (Isn’t that a nice word for it? Like we’re hobbits or something?), from the very first mention of brain tumor, our friends and family, acquaintances, clients and strangers, have been on board. You’ve sent cards, toys and stuffed animals, brought by food, took care of his big brother and sister, hosted fundraisers, donated THOUSANDS of dollars to various pediatric cancer charities and so many more things that I can’t mention or I’d break the internet. He touched your heart. I can see that.

And still, I kept him from you. I sugar-coated and avoided – call it an over-developed sense of optimism and self- preservation – and I’m sorry. Sometimes, his situation is so hard for me that I sit on the bathroom floor and cry. Or I sing stupid songs really loud in the car (You want to know the best/worst one? “Like I’m Gonna Lose You” by Meghan Trainor. Check it out, I just ruined it for you! Now you’ll think of Cam every time you hear it.)

Today I was talking to Cam’s big brother, Carson, who is now fifteen. When the ambulance was at our house Friday night, Carson disappeared downstairs. I was trying to keep my shit together and not tell the firefighters and EMS team stupid things so I barely noticed that Carson had left, but today I was trying to pry from him the reason why. He claimed he was trying to stay out of the way, but I recognized the truth: he was scared. If he ignored Cam’s illness – if he avoided facing it – it wasn’t happening. Like the impressively well-adjusted mother I am (Ha!!!), I explained to him that wasn’t a healthy way to handle the situation. We need to talk about it. We need to confront it. Process it. Take care of each other and let others support us as well. We have to help each other, and that includes not hiding in the basement when firefighters are tromping through your house. For frick’s sake, help me remember to pack underwear!

Carson’s a smart kid. He got it. We’re a family. We have to stick together. Nobody gets through trauma alone.

It’s time for me to take my own advice. Not about underwear (though that’s important, too!) but about opening up to others who care.

You, who have signed on to know about Cam, deserve to know what’s happening with him and I need to stop avoiding. The internet is a public place, and honestly, it scares me a little (a lot!), but you who are reading this only signed up because you love Cameron. So I trust you.

Here’s the short version of where we are now. Cameron has had pneumonia and pancytopenia (when the red blood cells, white blood cells and platelets are too low) off and on for around the last eight months. Since last July, he’s been in the emergency room more times than I can count, has spent maybe twenty (thirty?) days in the pediatric intensive care unit (PICU), about ten of those (so far) intubated on a ventilator, taken three ambulance rides and has been on crap-loads of steroids, antibiotics, inhalers and nebulizing treatments, had dozens of x-rays, MRI’s, blood transfusions and scopes, and been poked with about a bazillion needles. No, he’s never caught COVID (he’s good and vaccinated, thank you very much, and the people around him are very protective), but they did culture pseudomonas in his lungs last month. All of this appears to be a result of his brain tumor, losing tone in his upper airway and aspirating into his lower airway, though we are still trying to rule out very unlikely things like cystic fibrosis and immune system disorders. The last few weeks, it takes just about nothing to send him into an episode where he can’t breathe, he fights and cries, lays on the floor and scares the shit out of everyone in the room.

As I write this, we are in the PICU, intubated and on the ventilator. He is finally comfortable, with a machine helping him breathe, his IV full of sedating drugs. His little pink chubby face is peaceful (he got a blood transfusion last night), his arms splayed out like he’s flying, a pillow under his butt, a catheter in his bladder. I’m very sad (what a stupid, puny word, but I’m too sad to think of a better one), because I don’t know what’s going to happen. I know that Kris and I, and his brother and sister, and the people who do know where he is right now, aren’t going to stop fighting for him. But I also know there is a limit to science and to what the human brain and technology can do.

I don’t know who’s reading this, but I know if you are, you know Cameron and care about him. Thank you for that. It just may save all of us.

And thanks for reading. It feels good to be back.

The heart-melter!

30 thoughts on “An Update LONG Overdue”

  1. Dear Lauren and Your Beautiful Family,
    I have thought of you often over the past few months and the strength and fortitude you have simply takes my breath away. My love goes out to you constantly and my wish for, just maybe, a tiny little miracle–it could happen! Forever love, Marilyn

    1. Hi, Grandma! Being strong isn’t really being strong when you don’t have a choice, but thanks for thinking it anyway!
      Love and miss!!

      1. Such powerful and true words that touch my heart… “Being strong isn’t really being strong when you don’t have a choice.” Please feel the cocoon of love wrapped all around you and rest in it when you can let yourself. My heart continues to hold you close, always will.

  2. Words feel so meaningless now but words are important.
    What you and your family and especially Cam have been called upon to do is so unfair. The strength required of you is immense. It’s more than any family should have to show up for.
    And yet ~ here you are. And you show up day after day after week after month after year. For each other, for your extended family and friends, but most of all for Cam. The Universe knew what it was doing when it chose you for his parents, for his brother and sister. What a blessing you are for each other.
    Thank you for opening your world to us. Please know you are in our hearts, in our minds, in our prayers. Sending love and hope~ Cindi and Charlie

  3. We appreciate the update Lauren and will continue to lift you all up with the One who can heal little Cam. None of us can know what you and your family have been through with all this. I do know that we continue to care and wonder and pray.
    Hugs from Ed & Tory

  4. Lynne and Wayne

    Oh Lauren, we love you all so very much. Absolutely, we are stronger together, but no one could fault you for compartmentalizing. Your aunt and uncle remember when we used to take you, as a toddler, to watch the movies of your choice on the big screen at the little air base in LJ. You’re the one who made us think, maybe we should have kids. ( When we were first married we didn’t see children in our future.) We love you deeply and will always be here for you whether you’re putting everything on the radar or not. You’re on ours. We think and speak about Cam constantly. He’s part of us. You all are. Thank you for the update. We’ve got you, always. LOVE YOU CAM MAN!❤️ Aunt Lynne and Uncle Wayne.

    1. Really? I didn’t know that! Sure am glad you had kids 🙂
      Miss you guys. Love you guys. See you soon.

      1. Oh man. I’m so so sorry! I pray for Cam often, and while I’m happy to hear an update, I’m sorry things have been so hard. These words sound pretty lame and crappy, and what you are all going through is even crappier.
        Shittier.

        You don’t have to respond. I know how it can feel to think you need to help regulate everyone else’s emotions every time you share something vulnerable. I know this isn’t about me. I am perfectly competent to make up an awesome response *for you, so you don’t have to. 😆

        I love you, Lauren. I love your sweet family from afar, and I love Cam.

        Mary Cummings W.

  5. Me too! So grateful for you and all your sweetness! I didn’t think this went through because the WiFi was wonky when I was writing it. I tried to reproduce it on FB so excuse the double do… Love you Lauren!

    1. It’s cool. I’m trying to relearn how to do this blog and website, it’s been so long. And, as you know, I SUCK at facebook!

  6. Barbara Teicher

    For the first time in my life I am at a loss for words. I don’t know whether to say thank you for writing or I’m sorry or what. It’s like when you said your words I’m sad sounded so inadequate. No matter what I say it would feel inadequate. Know that there is so much love coming your way. It’s hard to fathom the pain and heartache that you and your family are going through. At the same time, the love and joy little Cam has brought all these years that maybe he wasn’t expected to. I am just sure in the dictionary next to the word fighter is a picture of his sweet face. You are all loved. Thank you for sharing.

  7. Lauren, thank you for your Cam update. I wish there was something I could do or say to make this better. Praying for Cam and your family. Hugs and love to you all. ❤️

  8. Kelly Jo Smith

    Lauren,

    I think you and your family are brave. I imagine you all are weary, and heart broken. Thank you so much for sharing this very difficult journey. Take care of each other. No words can be said to ease this difficult time, but your words capture the love you have for Cam and your entire family.

  9. Your first job is to you and your mental health and your children. Yes, many other people love Cam and are praying for him and eager to hear updates. You still need to be able to function in your day without worrying if the everyone else wants to hear updates. Sometimes “fine” simply means you’re surviving. No one is owed anything information wise. I hope that updating the blog is a place where you can feel support, let other people help you carry the load emotionally and in prayer. I hope that it doesn’t feel like an obligation because people expect it of you or you feel they somehow deserve it. Sometimes keeping your head above water and continuing to breathe in spite of all the crap you’re swimming through is all that can reasonably be expected. So, from one well meaning mother, who’s never had to handle anywhere near the amount of emotional trauma that you have, give yourself grace and keep your expectations of what you can manage realistic. We expect so much more of ourselves than other people do. Your best gift to both of your children is helping them survive and helping them know how very much they are loved.

  10. Sending big hugs to you and all of team SuperCam, especially your little mighty hero himself. My favorite days were always when I knew I would get to see Cam…wish I was still there to be able to visit while you’re in the hospital. I know you are incredibly strong (and humorous), but as you said, sometimes being strong all the time has its drawbacks. We’re all here for you and your whole family as you continue this fight. PS remember how Cam would always get so distracted by his handsome self in the mirror he didn’t have time for therapy? 😉 Hope he gets to grin in the mirror at himself soon. Sending love your way!

  11. Oh Lauren, I am so sad to hear that Cam and all of you have been through so much! Please know I will be praying for all of you and sharing your story with Cam’s KS Support Team. We all love him and I know positive energy will flow from us to Cam!💕

  12. Thank you for this update – I’m sure it was difficult to write. We’re sending love and strength to you and your wonderful family. Our hearts are with you all. 💜

  13. Amy Black-Ryel

    I hope I don’t have to say it here, in the phone, or in person- I love Cam and you guys and you are always in my thoughts and prayers.

  14. No apologies are necessary. We know you’ve been busy. All of you, busy living this life you’ve all been given. Overwhelmed and I’m sure your heart is maybe anguished, as opposed to sad, (or in addition)scared about what May come. However, we don’t get to know about that yet. So, you go ahead and sit on the floor and cry, and scream, and stomp your feet, because cancer sucks, and it’s not freaking fair!! Love and hold on to each other, and support each other and We, in the collective, will hold you all in our hearts, our prayers and our hopes, for you all, and especially your little Super Cam! As Parents of a kid with special needs, you and Kris are stronger and wiser than you think, even is you weren’t given a choice, and you’re all courageous!! Sending Love, Peace, and healing energy in so many forms.

  15. We’re all here pulling for SuperCam. If anybody can do something incredible, it sure is him. I wish I was still there so I could visit you while he was in the hospital. Sending big hugs and lots of love your way. I know you are incredibly strong (not to mention very humorous), but as you said, sometimes being strong all the time isn’t the best thing. We’re all here for you and the whole Barrow crew! PS remember how Cam would always be too distracted by his handsome self in the mirror to do any therapy?? Ha! Hope he gets to grin at himself in the mirror again real soon. Thinking of you all often.

  16. Mary Beth Eversole

    Brett and I love you all so much. We are always keeping you and Cam in our thoughts. I’m sorry. I’m sorry you all are having to go through this. And please don’t apologize for wanting to keep Cam for yourself. He is your beautiful baby boy. Yours. We love him and we love you and we will be here for you with or without updates, my friend.

    1. Thanks, Mary Beth! Cam’s been sick for so long, it’s easier sometimes to pretend like it’s just not happening, and to avoid talking about it, but maybe that’s not always healthy? I don’t know, I’m just trying to remember to take a shower! Thank you for the support! We miss you guys!

  17. Lauren, Chris, Carson and Brady,
    You all are on our radar always despite not letting you know that. We are praying for you all while you journey on. Your willingness to share your experience has been a testimony for all of us, and we are amazed and thankful that You have each other. Sending love and hugs!
    Forrest and Beth

  18. Lauren, I have so little words to fill a heart as you just did with this update. With tears and smiles, I absolutely admire and adore your strength in sharing … now and always. Not only the special and intimate details of Cam’s health, but of the humor, heartache, fear, and love saturating you and your family everyday. I so often joke text with Kris, feeling now very naive to the days of your lives (and no, not the show ;)). I love that you have created and invited us into this space with you, Cam, and the fam. It’s an honor to know all of you, there is something so special about The Barrows … it’s beauty beyond any words I can arrange. Love and hugs all the time – from the PICU to the ambulance to your home and every step in between ❤️

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