We are glad to say that the CT scan is behind us and we don't have that to look forward to anymore! It was a long day, first getting Cole's port flushed and then going to the hospital to have his scan, only to be delayed almost 2 hours b/c the anesthesiologists were behind schedule. He was certainly a trooper, not being able to eat since midnight the night before, finally being able to eat at 4pm. He hardly fussed the entire day and even napped twice.
The hardest part of the day was Joe trying to get him to drink the Gastrografin (the contrast). It tasted awful and made Cole throw up and be miserable. The Radiology department told us we could bypass the rest of that and they could just give him the contrast through his port when it was time for his scan. This was so much better!
Dr. Goodman called today with the results and they were for the most part- good. He still has the lesions on his lungs and liver but the she doesn't know if they're active lesions, scars, scabs or what unless a biopsy is done. All we know is his counts are good and the lesions on his organs are looking progressively better (less noticeable) with each scan. So he gets to stay off treatment. They will continue to look at his organs through CT only since x-ray and ultrasound are not showing the condition of the lesions clear enough. The question is how often; every 3 months? every 6 months? She has a call into LCH leading doctor, Ken McLane out of Houston, who we met at the Hike in September, to get his advice.
So all this treatment is behind us and let's just hope and pray for the best!! Please pray for continued healing and strength for Cole and for our trust in God- to know that He has a plan for our family and we will be able to get through anything with Him!
About Cole Kambeitz
- Holly Kambeitz
- Cole Jonathan Kambeitz was born October 5th, 2008. He was born with chicken pox-like lesions on his skin. After a CT scan, MRI, x-ray, ultrasound, and a biopsy, he was diagnosed with Langerhans Cell Hystiocytosis (LCH) at 3 days old. It affects his skin, liver and lungs. He completed treatment of 1 year of chemo and steroids and after a liver biopsy in late November '09 confirming no active disease, he is officially in remission. Today he is a very happy boy, excited to explore the world.
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2 comments:
This is great news, guys! Cole looks so good- you would never know he was sick. I'm really glad that things are looking good. We think about you always! It was great seeing you last weekend. Give Ruby a hug for me!
I am so thankful to hear this news. We continue to pray for Cole's healing and trust his amazing life into the hands of our Lord. For a little one who has undergone so much physically, he is the happiest of babies! Cole's smile brightens up everyone around him!
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