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Sent: 11/13/2011 5:40:53 P.M. Central Standard Time
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Jonas's Updates
Thursday, November 10
Posted Nov 11, 2011 12:25amToday Jonas spent four hours in the waiting room to get a 10 minute injection of chemo. It was a quick one. Then we went and spent an hour at the proton center. He is starting to show signs of irritation from the radiation that looks like a sunburn across his left cheek and temple, and redenning his left eye somewhat. (Still no vision in that eye, and Dr. Hughes confirmed once more today that it probably will never come back. We have met so many people - with and without cancer- that have only one functioning eye that Jonas is comfortable with the idea now and is adapting quite well.) Our proton specialist says the burn will probably continue to get more uncomfortable and gave him a cream to put on it. She also recommended a special mouthwash as she noticed that his saliva consistency is getting a little thick --something they are watching for. Because of the location of the radiation, they anticipate that he will probably lose some of his salivary gland function and want to keep his mouth from drying out. Saliva is important for digestion, but also for keeping the tongue soft and for protecting the teeth, too. Jonas has already been using a special toothpaste with extra flouride in it to protect his teeth. He has to take super, extra, good care of his teeth because once his mouth and jaw have been treated with proton radiation he will never be able to get braces, root canals, or have any teeth pulled. If he does, it is possible, maybe even likely, that he will lose a portion of his jaw because the radiation is damaging the jawbone's ability to fight future infections or adapt to changes. These things are a small price to pay compared to what regular radiation in Kansas City had to hold for him. Regular radiation would have meant losing his lower left jawbone, all the teeth on his left side, part of his tongue, several saliva glands, part of his left cheek bone, his pituitary gland and most likely brain damage. So this is the comparisson, and why we are here in Texas. Gooooooooooooo Proton!
A big thank you to Amy Alvidrez and Jessica Bobal, two more of Jonas' awesome teachers, for the Crop Against Cancer fundraiser they held at PLMS last weekend. I am told that it was a great success and a good time was had by all! Thanks to the folks at the Scrapbook Boutique in Lee's Summit and the many others who contributed . Making memories. = )
And Jess, thank you for calling up my girls and inviting Blaire to go trick-or-treating with you. That meant a lot to me. And they were such cute princesses, too!
You may remember that last week I mentioned the 'Jack-o-lanterns for Jonas' fundraiser they had at Mason Elementary. Well, the student council put together and sent us a booklet with a picture of each decorated pumkin along with a message from each entrant. So fun! Jonas and I have poured over it and still can't decide which one is our favorite. But he does want to know......which one won??? Thank you Teresa Bryant and Sarah Keller, the StuCo sponsers, for making that happen and for the generous donation. That was all really cool.
Jonas got several care packages this week. Thank you to Mrs. Dahn for his choir shirt, sweatshirt, and bracelet. He is now a full fledged choir Ninja! Thanks to Kelli Jordan, Marta Gillilan, Chris Costman, Susan Murphy. Aunt Lizzie, you rock. And also to all the folks who continue to leave uplifting messages of understanding and encouragement - Mel,Reg, Debi, Wendie, Steve, Donna, Marilyn and all the other message writers-- It makes our life seem less of a trainwreck to be gawked at and more of an interactive communitcation when someone takes the time to acknowledge what was written and blog a bit back at us. Thank you.
Jonas got a special care package this week from none other than Derek Jeter! New York Yankees, baby! He read and reread the letter about 5 times, and still couldn't believe it! Bet you can't guess what was in the bag.......
While out to dinner at a restaurant this week, Jonas also ran into several police officers and Marines who gave him some patches and trading coins like Officer Wiley gave him. After talking for a bit, one of the men was so impressed with him that he GAVE him his Naval and Marine Achievement Medal that he had earned in Iraq. He said that he had signed up for his battle, and Jonas didn't. He commended Jonas for being so brave in the face of something so daunting. He encouraged him to stay strong, keep fighting and beat this thing. Tomorrow is Veteran's Day. Remember those who have served. The selflessness they put out there on the line is unequalled.Send a message
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Jonas has been suffering from intense facial and headache pain
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