St. John's Group Email Jonas update

Jonas's Updates

Thursday, January 12

Posted Jan 12, 2012 8:40pm
In between chemo treatments, Jonas goes to Children's Mercy about twice a week to get blood drawn so that lab testing can be done on it. He does not go to 4/Henson, the oncology floor of the hospital. There is a special hemotology/oncology (hem/onc) clinic that is in a seperate tower of the hospital, accessed by a different set of elevators. Just before the first of the year the Hem/Onc Clinic was moved to a new location down the hall. Let me tell you it is Fan-Tastic! There was nothing really "wrong", per se, with the old clinic. It was adequate. Okay, just barely. The number of kids being diagnosed with cancer and the number of kids who are saved/surviving with cancer is growing and growing and that old clinic was just bursting at the gills with patients. It was old and cramped. The new clinic is ab-so-lute-ly wonderful. First off, there is just no beating new and clean. Mwah! Additionaly, the new space is huge in comparisson. It is clean and quiet and spacious. The layout is so well thought out for privacy and ease of use that I could bore you with details. I can't go on enough about how happy we are with the change. I would say it is easily superior to the MD Anderson pediatric clinic and we are so happy to be in Kansas City at Children's Mercy.
Speaking of other cancer facilities ....throughout the month of December, Jonas heard a local radio station fundraising all season for St. Jude's. While he understood -- and was grateful to them for seeing -- the need to raise money for pediatric cancer, Jonas was wondering why our own radio station doesn't do that for Children's Mercy. Children's Mercy is one of the top (US News and World Report's #32) pediatric cancer hospitals in the nation, and they are the number one pediatric hospital in the tri-state area. If any of you have ever had a child with a critical medical issue -- you know. Your pediatrician will send you immediately to Children's Mercy. We are so very fortunate to have this hospital in our own back yard.
Jonas was there just yesterday. He had to go in to get his labs done and to get an injection of chemotherapy. This round always confuses me because after last week's chemo.... his counts drop and he should be on his way back up, but then he gets this single dose a week later (yesterday) and it seems like he plummets again. The report on his blood was good. No tranfusion needed this week. No platelets. No blood. Not yet. Hopefully we will make it through the weekend.
I wanted to say thank you to Mrs. Gouldsmith and Mrs.Cornell and all who participated in the fundraiser at Woodland Elementary before the break. Jonas is still planning to come see you all soon. He is starting school himself this next week ( his homebound teacher will start making regular visits to our home).... unless the snow makes that impossible. He says that he has his fingers crossed for another snow day for you all tomorrow. = )

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8 Message(s)

Posted Jan 13, 2012 9:49am
Good morning! So good to hear from you and see that things are going well. I remember one of the last times Alex was in clinic, there were so many people in the waiting room that they were spilling out into the hallway. And then another time, she had to receive her pre-chemo IV meds sitting in the waiting room because there was no place to be in the actual clinic. Whew. Long overdue for the expansion! But, you are right, with that brings the harsh reality of how many kids are being diagnosed. Very sad. But, on a more upbeat note, we are glad you are home and can get into a more "normal" routine (is that really possible?). Please let us know if there is anything we can do. And, to the say the least, Austin was very upset that Alex and I came to see Jonas at the hospital and he did not get to go! :) Please let us know when Jonas is feeling up to company as I know Austin would love to see him. Take care and talk to you soon.
Posted Jan 12, 2012 11:05pm
Tomorrow is an in service day for the teachers so at least the kids get their 5 day weekend like Jonas wanted. :)
Posted Jan 12, 2012 10:14pm
So glad that things are going well. I agree with Jonas about raising money for Children's Mercy. They were incredible when my daughter was diagnosed with diabetes. We are very fortunate to have this hospital in our area. Please tell Jonas hi for me.
Posted Jan 12, 2012 9:59pm
Sounds like the CMH is looking good:-)! Would love to drop by sometime and say hi or take Brooke for the day to help out. Just call 816-509-3972 whenever it works for you. I know that things are crazy so just let me know! Take care!
Posted Jan 12, 2012 9:21pm
Sounds like some positive things going on! Think of you daily!!!
Posted Jan 12, 2012 9:04pm
Glad to know that you guys are in a bigger more spacious HEM/ONC. Hope to see you back in school with us soon Jonas!!!!!
Posted Jan 12, 2012 9:01pm
Thanks for the update Kristen...happy the Hem/Onc clinic finally got moved in to its new space and you guys can spread out a little and have more privacy. Glad Jonas' counts were good too and he was able to get his chemo! Hope he's feeling ok after this round!
Posted Jan 12, 2012 8:50pm
You are an amazing family. Mrs. Cornell simply asked our students to give to you rather than bring us gifts. We are both very blessed and knew that the money spent on us would be better spent on Jonas. Praying for all of you daily.
Welcome, angie

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