Hello again. : )Thank you to everyone who came out to help fund raise for Jonas at Culver's Night. The restaurant was packed! Thank you to Shelli Cornell and Amy Westacott! You girls are-- The Bomb! (do people still say that?) You are goodness and joy wrapped in enthusiasm. And a Big thank you to Melissa Gouldsmith, Kathy Ryan, Donna Everett, Vicki White, Patty Voss, Debbie Cooper, Becky Morales, Dr. Pragman, and all the many other friends and teachers (I'm sorry to leave out so many names) who helped make this an incredibly successful fundraiser! Between the Culver's Night and the penny drive at school, they made an unbelievably large donation to our family. We thank you for that! We are overflowing with gratitude. Our savings was depleted long ago, and being a self-employed family makes for a greater challenge at times like these. I also cannot leave out the owners of Culvers and Chick-fil-a! Both owners, along with Shelli, Amy and Kathy, all took a PIE IN THE FACE for Jonas in front of the entire Elementary School. It was a wonderful event! Thank you to all the kids who made that possible by bringing in your pennies. And thank you all for your love and generosity. Looks like we have two new favorite restaurants, too!Jonas has been feeling well enough these past few weeks to get out and mow the lawn, help with his baseball team's practices, and to go to a Royal's baseball game. Thank you to our friend and neighbor, Ryan Snyder, who landed Jonas the opportunity to meet Mariano Rivera before the Royals/Yankees game a few weeks ago. (Jonas's two favorite baseball teams!) Rivera is the #1 relief pitcher in baseball history and is retiring after this year. Last year he was pretty badly injured during a game right here in Kansas City. He could have retired THEN, but he wanted to play one more year and go out on his own terms, not stopped by his condition. Mariano was sharing his story of inspiration and love of baseball with people from the community and listening to folks share their own. Jonas told him about how he loves baseball and that he admires Mariano for his commitment to the sport, such a long career. Joel then told the group about how Jonas was in such pain in the beginning but showed up to his baseball games and just wanted to pitch, begged his coach to let him get just one more batter out. Anyway, several articles hit the newspapers around here and on MLB.com – here is a link to one of them. http://www.kansascity.com/2013/05/11/4230988/never-been-a-pitcher-quite-like.html Mariano gave Jonas several autographed baseballs and took his picture with him. (I will put it up in the photos.) Jonas was on cloud nine! Thank you so much Ryan. You have always been such a good friend to our son. Thank you for this, too.Another thank you to our Timberlake Homeowners Book Club friends! They meet once a month and always share a big spread of food. We were so delighted when they shared casseroles and salads, cheeses and desserts with us a few weeks ago. Delicious! And you wouldn't believe how handy!!! It made that last week of chemotherapy so much easier for me. Marylin, Leita, Charlotte, and all my other book buddies – Thank you so much.Jonas has now completed the control phase of his treatment. The initial chemo/radiation are behind us and he has had approximately two weeks off of treatment while his body tries to bounce back. Now we move on to stem cell harvesting. The first part of the harvesting involves getting the stem cells to mobilize from the bones to the periphery so that they can flood the bloodstream with stem cells when the time comes. Unfortunately, that means getting daily shots in the thigh between now and the harvest date next week. (One of the more stressful events in our household-- It is painful for Jonas and we have to give it to him ourselves here at home. Ouch!) It causes bone aches and flu-like symptoms. Not a good feeling in general. But on the flip-side he will harvest two to five million healthy stem cells that can be frozen for up to ten years, should he ever need a stem cell transplant.
Next week he will be hospitalized for the better part of the week. The following week he will have all his scans run again to see how much we have beaten back so far. Then, we march on toward the Clinical Trials. I will post more about that next week.Hey!! I also hear that there is now an open gym night for Jonas at Dave's Gymnastics! So cool!Does anyone have the picture of Jonas with Shelli and Amy after their pie in the face? Can you share it with me on FB or something? I want to share it, too.
Send a messageCheck this to post a private message - only you and the CarePages website manager will be able to view it.
About JonasJonas has been suffering from intense facial and headache pain
for approximately two months. His...
7 years ago