St. John's Group Email update on Jonas (grandson of Don Nolte) 


Jonas's Updates

Halloween 2011

Posted 9 hours ago
It has been a busy couple of weeks here in Houston. Jonas continues to improve. His proton therapy radiation is underway, 20 minutes a day, five days a week. He reports no ill-effect or discomfort of any kind as of yet. I hope that is the case for the duration.
The proton center is at its own location and has only 3 proton machines. The building itself is like an iceberg. It is just one story tall but is sunk three stories underground, with only one floor for usage. It is a massive accelerator, needing two other large buildings behind it, each of them three times its size, from which it draws its power. Jonas took a picture of the model and I will post it here so you can get an idea of what the layout looks like. In the model, there are a series of running lights so you can see how the power flows when the machine is turned on, but unfortunately you can't see that in a picture. It is pretty cool. The lights run allong the path and circle around at the end faster and faster and faster until they shoot out of the PT machine. Jonas is asigned his own Gantry, which is what they call each unit, and has his own team of technitians he works with each visit. He has a special hard plastic mask that he wears over his face and head that is bolted down to the table to keep his head from moving. Pretty scary to look at. He also has a special bite plate to keep his teeth and tongue in postition. ( I thought that today of all days, I could post that picture. Seems pretty fitting for Halloween. We will see.) The room is like a giant MRI or CAT scan machine. The technicians help Jonas get positioned correctly on the bed, bolt him down, and leave the room to operate it from a control booth. The whole machine rotates around him into postition. Large portions of the unit are recessed in the walls and are ejected at certain times throughout the process. Poton beams are focused on the tumor and are emitted in sequences. No one can be in the room with him while the machine operates, so I wait in the waiting room.
Jonas' proton doctor is reported to be the number one pediatric proton specialist in the world. She only sees 12 pediatric patients at a time, partly because that is all that can physically be scheduled into three machines that operate 12 hours a day five days a week. Proton therapy- and these machines included- is currently only used for head and neck pediatric cases and for adult prostate patients, and a few scant others. These are cancer patients with tumors in the most intricate of places that are inoperable or would otherwise be disfigured with regular radiation. Most of the people we see at the PT center are older men. We were assigned our doctor through the hospital, but have met people from around the world who came here because they sought her out.
Speaking of a world view, there are so many people here- from patients to employees- that are from other countries. I can confidently say that I have never been in a more culturally rich place in my life. Not in LA, not in Europe, and definately nowhere in Missouri. As a patient, Jonas is a minority, and I would say that somewhere around 50% of the kids do not speak English. Jonas is one of the only caucasian American kids here . A very large percentage of the children are from the middle east, lots from Mexico and a few from Europe as well. The hospital staff is so very diverse, too. We have worked with doctors, nurses, technician and pharmacists from dozen and dozens of countries: India, Korea, China, Indonesia, Mexico, Brazil, and Poland, just to name a few from memory. Houston, the city itself itself, kind of reflects that. There are very few zoning restrictions and I find that the community is laid out in a fairly jumbled fashion. It is both refreshing and frustrating. Industrial areas mixed in with residential areas. Commercial properties that don't face the same directions or flow easily from one lot to the next. One building 6 feet from the curb and the next is deeply inset. It is a fanscinating hodge-podge. And let me say, it all makes for some crazy driving as well.
Jonas has spent lots of his free time in the past few weeks making Duck Tape wallets. He has so many people selflessly working to help fundraise for his medical treatment and he wants to thank everyone personally. He just doesn't want to spend time working on his handwriting, card after card. No. Lol. He would rather make everyone a Duck Tape wallet as a token of his gratitude. So he makes a few every day and we are sending them home little by litte. Please don't be offended if you don't get one right away. They take a couple of hours to make and his list keeps growing. He got a letter from the hospital last week that they would like to buy some from him! How cool is that? So now he is thinking he might try sell them online, too. = )
Speaking of Thank You's..... A big thank you to Wendie Trent, Uncle Scott, Susan Murphy, Nick Wickline, Marilyn Koshland, Aunt Stephanie, Kelly Wells, Joanna Fuches, Kathy Keuker, Christine Laird, Rebecca Doss, Everett, Melvina Young and all the kids at PLMS. We appreciate your thoughtfulness and every kindness. I could type endlessly about each of your generosities.
I do need to tell you about a package we recieved from a dear friend and all the kind folks at the Corpus Christy Aquarium in Texas. Chelsea Watson is a friend of ours who moved away from Kansas City last year to take a position with Corpus Aquarium. The crew at the aquarium have such big hearts and work with some super-amazing animals. They sent Jonas three framed paintings, painted by none other than the animals themselves! One painted by a stingray, one by a Macaw, and one by a dolphin! In the matting around the paintings the trainers all signed their names with words of encouragement for Jonas. Right now they sit on our kitchen counter where we can see them every day, but Jonas looks forward to going to see them just as soon as he is well enough. Thank you, Chelsea! And give all our love to the staff and animals! I will post a picture of them here as well.
I also have side by side MRI images that I can share with you. Good luck reading them. Ha! Note that the one on the right side is the old MRI and the one on the left is the new one. They are somewhat more difficult than they should be to read, because they are two different techniques (I think one has contrast dye and the other doesn't, I think. So they are almost reverse far as shading.) But you can sort of see a difference.
Well. This is what happens when I haven't journaled in such a long time. I barely remember everything I wanted to record, and I could just ramble on and on and on as it comes to me. There is so much.
Jonas' one real wish is go back to being a normal kid. He misses all of his friends terribly. He and I get along fabulously, but I can't match the fun he would have with his peers. This was supposed to be the year he went to the Worlds of Fun Haunt for the first time unchaperoned with his friends and almost a day doesn't go by when he grumbles about that. I hope you all have a happy and safe Halloween. Write and tell us about your costumes. = 0

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3 Message(s)

Posted 32 minutes ago
Unbelievable to read this!!!! Lance was a fire man for halloween! My mom made him a yellow coat with a black collar and black waist that had a place to hold his "axe". He had a yellow hat, black pants, yellow boots, and my husband insisted on making him an air tank! He spray painted PVC piping, added some cool reflective stickers, added a breathing tube and mask that was an expired one he brought home from the hospital, and added straps... pretty fancy! He was so funny at the church costume contest yesterday when they announced the winner of the baby-24 month category and it wasn't him (because he is 3) he said "Man, I didn't win" complete with a pouty face. Then they announced that "Fireman Lance" won the 2-5 age category and he started jumping up and down screaming "I won, I won!" So funny!!!! I finally got the final thing I needed to send to you, everything is in a box with the hotel address and I will mail it after school tomorrow so some fun stuff is heading your way! :) Miss you guys! Hang in there CAPTAIN PROTON!!!!! Sing-cerely, Mrs. Dahn
Posted 5 hours ago
So happy to hear that Jonas is doing well!
The treatment sounds effective and the medical team capable and compassionate. That's a very good mix.
Your descriptions of the "little world village" at the treatment center is vibrant and fascinating. We're inspired by how your family struggles to find moments of joy and pieces of beauty even as you go through something this grueling.
Thinking of you all every day -
Melvina, Greg and Sage
p.s. Great message from Brette! :-)
Posted 9 hours ago
Kristin Borchert:: oh, I forgot to mention that my children came to see me. It was lovely. I miss Brette most of all.
Just helping you out, mom.
Welcome, angie

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