We Wait and We Play

Today is the day Cameron was supposed to have his next brain surgery. Instead, I get to be home with him, to laugh and worry and stare at the snow coming down in May.

Cam has a specific, rare type of epilepsy characterized by subtle seizures that, if left untreated, will likely cause his development to slow or even stop entirely. Cancer caused this. His brain tumor- or the stroke he had during brain tumor surgery- caused this.

The original surgical plan was a hemispherectomy, to remove and/or disconnect the entire left half of his brain, the part causing the seizures. This aspect of the surgical plan is not really in question, though the thought of it keeps Kris and I up at night.

The reason the surgery was postponed is because because his surgeons are now planning to try and resect more of the tumor while they are in there mucking around. It sounds like a great idea, except that we know the tumor was irradiated last year, and so in theory should be dead AND we know there are a lot of important blood vessels right there and if Cam has another stroke, the show may be over.

So we must wait. I find myself wanting time to pass faster but at the same time hoping it never does. Cam is doing so good, he’s laughing and scooting around getting into cupboards. He points at everything, babbles and asks to read his favorite book, I Love You, Stinky Face. The thought of handing him over to have his brain cut into again is nearly unbearable. The reasoning, of course, is that the surgery will stop the seizures and therefore increase his development and quality of life. But what if it doesn’t work? What if he loses function and doesn’t get it back? What if there’s another stroke, this time to the only part of his brain he has left? What if he doesn’t wake up at all?

I can’t help but feeling like this surgery is elective. My brain knows its not, but he’s a happy, beautiful, vibrant two year old and this surgery could potentially take that away from us. Feeling insecure, today I email Cam’s neurosurgeon here in Aurora and his radiation oncologist in Boston to ask them once more how smart it is to risk damaging the blood vessels in order to get the tumor out.

Apparently, the long term chance of Cam’s tumor starting to grow again is about 50%. Ouch. I have to confess, I didn’t remember (or had blocked out) that horrible little statistic. Cam still has a lifetime of fighting ahead of him. I just conveniently forgot that fact, focusing instead on my sweet, happy boy in front of me.

There’s a fine line between hope and foolishness.

What a sad sack I am, crying in my cheerios. Must be the barometric pressure.

We decide we are going ahead with the surgery, both the removal of the left half of our baby’s brain AND the attempted removal of what’s left of his tumor. If all goes well, he’ll be walking and talking by the end of the year. And if it doesn’t go well…well, at least we know we tried and it wasn’t for nothing.

So now, we have three weeks to wait until he goes in for surgery. Three more weeks to roll the ball to him, feed him cheese quesadillas and sing him stupid songs.

And then…everything will be okay.

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19 thoughts on “We Wait and We Play

  1. Prayers are with you & Cameron every day. I know he will get better & eventually enjoy that Christmas stocking.

  2. Oh Lauren, my heart breaks for you and for Kris. I can’t imagine the immensity of this decision. Of course the outcome is unknown. You want to trust the guidance of your surgeons and doctors, but also must trust your instincts. No one knows your child like you do.
    Right now just enjoy every minute with our sweet Cam. And we are all choosing to believe that everything is going to be ok! I love you all! ❤️

  3. I don’t know you, but as a mom, my heart goes out to you and your precious son. Please know,a mother in Michigan, is lifting your son, you, and your entire family, up in prayer! Prayers for strength, courage, healing, comfort…to guide the hands of the entire medical staff… For you all to feel God’s love for each of you… For your son to get stronger, healthier… You are a strong, wonderful mommy. Cherish every single second you have with your son. Try to let God handle everything else.

  4. Our prayers continue for a supernatural healing-thank you for sharing your heart in this blog. We think of you every day- We pray every day for all of you. We love you

  5. Ugh. I love you guys and know you’re doing right! I’m sending so much love and light and everything your way! ❤❤❤❤❤❤❤❤❤

  6. Goodness me. This is some heavy stuff and very big decisions are weighing on you guys. We cannot wait to get there in two weeks to snuggle that precious little boy and give him our best wishes and prayers for a successful surgery. You all are so brave. We love you.

  7. You and Kris are without question warriors for victory…. and for Cam. What a special person Cam is – there is nothing that can change that…not even cancer, not even surgery.

    Wishing these three weeks to be over the top FANTASTIC – and even better than that following surgery 🙏🏻😌⭐️💪🏻

  8. Lauren, I can just imagine how agonizing that decision has been for you and Kris. Cam is such a joy and such a beautiful little boy. Please know that Our family will place Cam in our prayers every night. You are more than welcome to call us if you need to talk. Emily still talks about “Super Cam” and you are all never far from our hearts. Much love and prayers to you all. ❤️

  9. Oh, Lauren, what a difficult time. Our hearts ache for you guys. It’s just so unfair. Know we are holding you close and praying.

  10. Lauren, all you can do is respond to the light you have now. And it’s what you’re doing. You and Kris are making the best decisions right now with the best information possible. I’m praying that God will wrap you in his love and comfort as you face these tough decisions for the best outcome for your sweet boy.

  11. Lauren, you and Chris and Cam are in my prayers. I have been thinking about your family lately and appreciated your email updating us on what is going on. I pray that all will be well for Cam and that your faith will support you and Chris in making your decision.

  12. My great solace is “adult coloring” and I just finished a picture that has colorful, exuberant stylized blossoms, hearts and sun rays. Wafting among them are the words, “ANYTHING IS POSSIBLE.” I gaze at it every day thinking of Cameron and, what has become my mantra, ANYTHING IS POSSIBLE! All my love to the beautiful Barrow family, G-Gma, Marilyn Russell

  13. All of my love goes to you and your family! Carol is my sweet friend, I love her so much! She fills me in with Cam every time I see her. Just stay positive, it’ll all be OK! ❤️ Prayers to you and your family 💕

  14. Dearest Lauren.
    I read your entry and feel your heart in each word. I want to reach out and wrap you in a hug. People that love you hurt with you although we can’t possibly really understand the weight of the decisions, uncertainty, Second guessing you go through and enormity of the whole emotional monsoon. You have made the truly best decision you felt best for Cam based on the facts you have. Nobody is gaurenteed tomorrow. Love for today and we’ll pray for tomorrow.
    In HIS hands…
    Much love and prayers., Barb

  15. Lauren and Kris, your family and Cam’s tumor have been added to multiple prayer lists. Even people around the world, who don’t know you are praying for complete healing. Support comes from many directions and in many forms. Holding you all in my heart, and enjoy your little guy.

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