Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

March 6, 2015

Surgery Today

Filed under: Neurosurgery — Mom @ 8:07 am

Last night’s intention to post an update on Colin evaporated when I snuggled with him in his hospital bed as he watched a movie. I was out like a light and he wouldn’t go to sleep. At some point, I managed to sweep food crumbs off the sheets and he did eventually fall asleep; with four straight nights where he can’t eat anything the next morning because of one procedure or another, who am I to begrudge him an evening of partying?

Off to the Races

We arrived in Memphis late Monday night after some traveling missteps, but Colin was ready for his port placement in the morning. Despite a visit from child life with a medical doll, he still doesn’t seem to understand the idea of leaving a device in his body to make venous access easier; later, it was clear that he expected to go through the entire process every time they need to get blood.

Oh, well. There are other things that he does seem to grasp with increasing clarity. Yesterday morning, on our way to Le BonHeur for his planning MRI, he said he was a warrior but that he was also a scaredy cat. I explained that you can’t be brave if you’re not scared first and we talked about not worrying about things that may happen tomorrow.

We have never explained the uncertain nature of this disease to the boys because it wasn’t necessary and there was no use in getting them worried about something that the worry wouldn’t help at all. At this point, however, Colin has done the math and realizes that the cancer could kill him. We are navigating the tricky waters of being reassuring while also being truthfully. We can’t just make things better, nor can we assure him that the next thing is the last thing.

Is today’s procedure Colin’s last tumor resection? I hope so but I can’t make it so. We need Colin to trust us to make good decisions and to take care of him the best we can. A few hours after absorbing his dad’s advice to not worry about things tomorrow, he declared that he was going to do that, and his mood seemed much brighter. He is processing so many things simultaneously yet makes continual progress and better than most adults.

Scan Results

On Wednesday, Colin put his new port through the paces with an MRI of the brain and spine plus a lumbar puncture. As we had hoped, the spine remains clear. However, the brain tumor has doubled in diameter and there are some new small suspicious spots nearby (none far away).

Most immediately, this changes the character of the surgery from an endoscopic procedure to an open one. Dr. Boop said he can’t clean up the smaller spots without it being open, but he can get everything he can see. Our desire for a minimally invasive procedure was based on the size a month before or the available of other procedures where that would be possible.

On a side note, I did have a phone consultation with Dr. Danish, a neurosurgeon working out of Rutgers who is a pioneer in laser ablation, a minimally invasive procedure that is able to target larger tumors. However, the minimum size tumor he can remove is around 10 mm, so we would have to wait for the lesion to grow. Even now, this lesion at 8 mm is too big to wait on, and I doubt that they could target the smaller areas.

Minimally invasive is nice, and there may be somebody who could endoscopically do this procedure, but we have Dr. Boop in front of us whom we trust and who can do it today. There was no question that we were in the right place and that the surgery couldn’t possibly come any sooner.

The other piece of information that we get from the growth in the last month is the fact that this lesion is much more aggressive than everybody had assumed/hoped. This is no “indolent disease,” as Dr. Gajjar had described it initially, despite the fact that it’s been 5.5 years since Colin’s original diagnosis. The next steps are more important than they’ve ever been.

Surgery Today

Colin should be going down for surgery momentarily.  He is the first case and Dr. Boop said to expect he will come out around noon or so; we just now received an update that it will probably be quicker because the tumor looks less invasive on the planning MRI, so he’s taking a different approach. We’ll be in the neuro ICU for one night, probably, and then back on the floor, for 3-5 days of recovery in the hospital. Of course, all of that has everything to do with how he does in all this.

One additional complication is the fact that this open procedure is right in the area where he previously had a huge blood clot (with the new surgical approach, he’s able to avoid that as well as some of the more serious potential side effects that come with that). He has the recessive gene for a clotting factor disorder (Factor V Leiden) that increases his risk of developing blood clots. Normally it’s not a big deal, but it does matter if he’s hospitalized and immobile for long periods or has major surgery. Of course, bleeding in the brain post-surgically is also bad, so we’re having to dance a fine line of risks in starting an anti-coagulant.

We plan on starting shots of Lovenox, our old friend from five years ago, about 24 hours after surgery. Unfortunately, it’s an injection in the belly twice a day. Using it prophylactically, we will presumably be on a much shorter course of it (it was seven long months the last time).

We will provide an update on Colin’s condition within the next day. If you use Facebook, I post more timely notes there.

8 Comments »

  1. Hugs and warmest feelings to you and Colin. What a trooper he is! Will be sending all the good karma I can muster your way. Stay strong.
    Love, Nancy

    Comment by Nancy — March 6, 2015 @ 8:32 am

  2. Hi there. I wrote to you several years ago. I met your husband when he came to the farmers market we attended at the Danbury Fair Mall. He told me about your son and how important good nutrition was to you all and about your blog. It pains me to see poor Colin still dealing with this. He will remain in our prayers. He is blessed that he has such a wonderful family to support him. Somehow, the good Lord has a lesson in all this. I lost my mom to NH Lymphoma almost 2 years ago. She was 85. During her last week with us, she had visions in the hospital of a little boy from India in the room with her. She told us he was there to show her that God wanted her to know she was sick so that the little boy wouldn’t get what she had. She was old and fragile and just couldn’t fight anymore. Colin is young and strong and you will all get through this. I truly believe that. St. Jude’s is amazing.
    God Bless you all, especially little Colin. We will keep praying for you.

    Comment by Nancy Colaruotolo — March 6, 2015 @ 8:40 am

  3. Praying for Colin!!!

    Comment by Rachel Hartstein — March 6, 2015 @ 8:45 am

  4. Love to Colin and your entire family. May God watch over him and the entire surgical team this morning. He’s such a wonderful, funny, intelligent, adorable, loving boy who will change the world. Actually, he’s changing the world right now by bringing people together. We love your family and think of you as a part of our family. You know I’m here for you 24/7 just reach out. Looking forward to seeing you all again after the rough winter weather. Prayers will continue. XO Val, John, Joe & Matt R.

    Comment by Valerie Raymonds — March 6, 2015 @ 9:16 am

  5. Colin’s at the top of the list of my prayer group.

    Comment by Christina Gutt — March 6, 2015 @ 9:37 am

  6. Thank you for the update on Colin’s care. I am continually amazed by your strength, both you and Ian. Your love, discernment and careful approach to his care is a driving force to his resilience. Colin is such a blessing to everyone. He causes moments of big smiles and laughter with his quippy jokes and timely antics. I look forward to spending more time with him in the future, but as for today carry on doing what you are doing. Praying for a smooth surgery and a speedy recovery so your family can be reunited. Hugs, kisses and lots of prayers

    Comment by Jessica Feliciano — March 6, 2015 @ 9:53 am

  7. Stay strong Colin!!! You will be in my thoughts all day!! Best wishes for a speedy recovery!!

    Comment by Dyan Chisum — March 6, 2015 @ 9:57 am

  8. Colin and your family are in our thoughts. We so hope that everything turns out well with this latest surgery. John Steven remembers fondly his friendship with Aidan and Colin during your stay here in 2010. We wish the very best for you all!

    Comment by Bob Sepanski — March 6, 2015 @ 11:58 am

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