This is an update on Jonas (Don Nolte's grandson) from Jonas's mom.
UpdatesJonas's Updates
September 20, 2011
Posted 21 hours agoHello from Houston. Jonas is thriving!!
I'm sorry I have not posted in a couple of weeks. Time seems to have just flown by. A combination of computer glitches, family dynamics, and new routines have kept me from posting like I had in the past. All that behind me, I will try to do a better job keeping everyone upt-to-date. We are now settled into a Marriott Property and have a base-camp to call our own. I think there were several people who had offered us Marriott points at one time. The hotel we stayed at originally would not accpet Marriotte points, so I did not record those offer like I should have. But this one does! So if you have any points we can use, that would be greatly appreciated.
Jonas has another round of chemo behind him and gets admitted on Thursday for three days for the next round. He has made it between every round of chemo here without going into the hospital for infection or neutropenia. Today was the first time that he needed a blood transfusion since we have been here, but he took it like a champ in an outpatient setting.
The doctor did explain to me recently that with cancers that are treated over this long a period of time, patients can expect to have many, many transfusions. They really like to keep those to an absolute minimum because the body can start to reject the new blood: something we do not want to happen. So far we have had NO adverse reactions. Smooth sailing.
Along with our chemo schedule, Jonas has had various other appointments with specialists. Most recently he had a five-hour psych test to evaluate his knowledge, logic, recall, etc.. The radiation that he is about to get may have an impact on his brain function and they want to be able to have a baseline to compare it to. His facilitator says that he is operating at high-level of skill which is a great way to start out, if there is any possibility of impairment. I am not terribly worried about this possibility. We have met two patients in the pediatric clinic who have undergone proton therapy in and around the brain. Both of them have had extremely uneventful episodes with the PT. No discomfort. No new side affects. No brain damage. I anticipate that we will find it to be the same.
Jonas has had several packages delivered to him since we arrived, containing dozens and dozens of letter from his classmates at school!!!! Wow. You can't believe what that does for this guys spirit. The first two he opened happened to be from kids he knew: Emily Tilotson and John Hogan. He was so jazzed, he just tore through the next dozen or so saying, "I don't even know most of these kids and they are writing to me anyway. Aw that is so nice!" He was really impressed by some of the artwork the kids drew for him, Shae Buffington and Sheldon, great stuff. Alyssa and Bobbie Nesselroad, Jonas says hello and thanks. He misses you too. Mr. Eaton, Jonas says, Hi.hi.hi.hi.....and then keeps laughing. He thought that card was a hoot!! We have several of them sitting out on the table for decoration and I plan to put some up on the wall. Whenever we have some down time he just rereads them and they really perk him up. I understand that more are coming, and he is really looking forward to that.
This past weekend, Joel came to visit for his birthday. 55! Saturday, the three of us drove down to Galveston (which wasn't even an hour's drive) to see the ocean. It was a lovely day. We walked the Strand, which is the main street of the old downtown, had ice cream at La King (an amazing old-fashioned candy shop), and watched a movie about the hurricane in 1900 that killed over 2500 people in Galeveston. We also went to Stewart Park and walked the beach looking for pebbles and shells. Jonas was a bit disappointed. He wanted so badly to play in the surf but he can't fully submerge because of his G-tube. We did get some fun pictures and I will try to post them tomorrow. It was a wonderful day and a great weekend.
I owe a big thank you to my Uncle Chuck who sent me a Forwarded Email about pharmacies. This article was about how we get scammed not only by insurance companies, but also by pharmacies. Some pharmacies mark up their drug prices (even generic) by as much as 1500% --which is why Walgreens can afford to put up a building every 10 miles. As it turns out, the article said, Costco has remarkable policy compared to all other pharmacies....they just don't do that mark up thing. And it is not just for their "members". ANYONE can get prescriptions filled at Costco. At least that is what the article said. (In our family we do that forwarding thing a lot. So I checked the information validity on Snopes.com which verified this as TRUE. Then I went to the Costco website myself to see if I could get pricing details on Jonas' meds.) As it turns out, this article was right on the money!!! I couldn't get the website to give me prices on ALL his meds, but one of them that I pay $630 for at the hospital pharmacy, I can get for $67! Same strength and same number of pills!!! I tell you this because when I find a money saver this big I think EVERYONE should know about it. I feel bad that I haven't price shopped pharmacies. I simply thought they were all the same. I don't know if there are others somewhere this low, but I don't think I have to look any further. Simply amazing. Thank you again, Uncle Chuck. If all of Jonas' other medications are that low, you litteraly saved us thousands and thousands of dollars. Knowledge is power.
I'm off to bed now, but wanted you all to know....
We feel your love and support across the miles.
Thank you. It sustains us and keeps us going.
I will write again tomorrow.Send a message
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