St. John's Group Email update on Jona



Jonas's Updates

Thursday, September 29

Posted 20 hours ago
Wow! Thank you, Lee's Summit! What at great turn-out at the movie night. Brette said that the theatre was almost full: so many 7th and 8th graders there! Jonas was checking out of the hospital right at 7 so we did not really get a chance to rent it and watch it with you. He was really happy to know that you were all there!!! Thank you to Donna Bullimore and Jessica Bobal for making it happen and all our friends who were on hand to help. Such a simple movie about tolerance, understanding and overcoming prejudice. Jonas loves that movie. He got a t-shirt from Children's Mercy that he wears all the time that says, "I am.... just like you." I hope that when you think about that movie, you will think about Jonas. Thank you all for coming out to the movies and supporting him. Joel, Brette and Blaire were overwhelmed with your enthusiasm and we feel your love all the way down here in Texas.
His hospital visit this go round was pretty standard: several days of vomitting and lethargy, sleepless nights with nurses coming in and out, taking vitals, changing IV fluids, requesting specimens and administering medications. Mostly, he lay in bed not wanting to talk or venture out of his room. We did have a wonderful surprise on Wednesday. My dear friend and Amber's mother, Kathy Kueker, along with her husband Roy, drove two hours to Houston and came to visit Jonas for an hour. It livened him up for while and brightened his spirits. They are planning to come back next week and we look forward to that.
For the first time I went to a parent-support-meeting. They shared with me information about The Sunshine Kids and Candlelighters that do special events for kids and other support services for families. They help to discount your parking(which $12 a day that we usually incur 3 days a week) and have special events-- like tickets for cancer kids to MLB ballgames, art museums and such. They will be a good resource for us while we are here. Additionally, there were women there who have been dealing with cancer-related issues for 10-15 years who had answers for other incedental conundrums that come up, practical as well as emotional.
It was especially useful since my only real difficulties since coming to Houston are family-related stress from back at home and I was able to vent for the first time since being here. I found the meeting to be quite cathartic.
When we got back from the hospital we opened our hotel room door to find several cards and care packages from friends and family! Coach Shawn and Lynda, Amy and Amber had sent several boxes of snacks, ducktape and lots of other goodies to make us feel at home. Jonas also got cards from lots of his friends, and Kate Bussen sent a really lovely book-mark handmade of beads that says, "Fight Jonas". My dear friend from California, and best bud since elementary school Linda Graybel Melas = ) sent a box full of Harry Potter videos and a HP poster from Warner Brothers, where she works. Can you say marathon weekend?!! Mr and Mrs Morales sent an official black and gold Orchestra wristband that he says he will never take off. But the big Kahuna that came in the mail had an address from The Kansas City Royals from #1 Royals Way, KCMO. It was a big 3x4 foot box. Inside was a painting of the two Royals players who had come to visit Jonas in his hospital room: Hosmer and Mousakas. Such a beautiful painting, with a green band like Jonas' bracelet painted right down the middle and autographed! An artist named David Medin in California painted it for Jonas and when the Royals were in California, he approached the two rookies about signing it and sending on to us here in Houston... which they did! Jonas was beside himself. He said it is going over his bed at home and we are looking for a way to hang it here at the hotel without damaging the walls. LOL. What a great momento. Thank you to all who were involved in making that a reality. Shelli Cornell. Amazing. Jessica Bobal. Thanks ,kiddo. David Medin, Your thoughtfulness and talent leave me speechless. Hosmer and Mousakas. You guys keep surprising us and all we can say is Go Royals!!! Thank you to everyone for welcoming him home from the hospital. It is heart-warming.
Today has been a totally lazy day. We slept in, hung out and watched tv, did laundry, went to the grocery and made a frozen bag of pasta for dinner. Tomorrow we go into get an MRI of his brain and spine. I hope to report an amazing shrinkage of that tumor. Every day I witness his improvement and am led to believe nothing but! His weight is up to 98 lbs - the highest it has been since this ordeal started. His pain is totally managed and we are tapering off his pain meds little by little. He is able to open his mouth further and further, indicating that whatever was blocking the movement has diminished. I KNOW that it is shrinking but I am looking forward to finding out what the clinical measurments have to tell me and will share that all with you tomorrow.
Michele -- I'm so glad we got to talk! I miss you.
Alex -- Hope you are having fun in Germany.
Reg-- So glad to hear from you again, my friend. Science rocks, does it not?
Susan, Christine, Amber, Jessica - Thank you for looking out for our girls. You chicks are serogate moms for them right now. I don't know what I'd do without you.
Just Remember -- Life is all about how you handle Plan B!

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6 Message(s)

Posted 4 hours ago
Exciting update. That painting sounds awesome!!! Sooooo glad that you got to have a relaxing day.
Posted 9 hours ago
WOW!!! That is such GREAT News. I am so proud of everyone of you for the support you have been giving JONAS. He is a WINNER and my HERO. Love you all ....... Aunt Stephanie
Posted 10 hours ago
What an uplifting update!
Hugs to you all. You inspire us, Jonas and family!
-Mitch, Cindy, Vance and Phillip
Posted 12 hours ago
Great news about all the wonderful support making its way down to Houston.That was the first time I saw the movie and I loved it too.It almost made me cry! Well, yes it did make me cry, haha.Keep fighting Jonas. We miss you.
Mrs. Fuchs
Posted 18 hours ago
We have access to some Marriott points for you guys. We sent the info to Joel. Have him contact me...or email me, so I can get the info to you!
We think of you often with love.
Mrilyn & Koshie
Posted 20 hours ago
"Life is all about how you handle Plan B."
You are amazing. You and your family continue to be in our thoughts.
Mel, Sage and Greg.
Welcome, angie

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