Update on Jonas

-------- Original message --------
From: B4eon@aol.com
Date: 11/23/2013 11:35 PM (GMT-06:00)
To: JBllngh@Aol.com,dgwinter@centurylink.net,molly_hendershot@yahoo.com,ragjrg@att.net,jmbiest@gmail.com,wkostman@gmail.com,kozhav@juno.com,lois.boeger@gmail.com,warrlutheran@centurytel.net,2msann@gmail.com,JeaneneMoritz@hotmail.com,Nevinelcj@aol.com,bnolte@att.net,gnjn@hotmail.com,rockntaz37@yahoo.com,revklaus@hotmail.com,Ragoss@SuddenLink.net,gdrapp@att.net,sayreet@sbcglobal.net,snsrobine@centurytel.net,rlgolter@yahoo.com,prkchopcop@aol.com,malveaux28@juno.com,damarwill@frontier.com,Witzl@aol.com
Subject: Fwd: (no subject)

Posted 6 hours ago
This week has been a long wait but the decision-making process isn't really over yet. I always hesitate posting when we are in a holding pattern, but let me take a moment to give you a little insight into the stops and starts on the road of pediatric cancer treatment.
This is a generalization and, of course, there are lots of deviations off this basic path, but it basically looks like this: When a child is diagnosed with cancer they are immediately given the "standard course of care" for that particular cancer. In the case of Ewings sarcoma, the standard is to remove the tumor and or the affected bone/tissue and then to proceed with five specific chemotherapy drugs that have been designed best to work against Ewings. If surgery is not an option, they can choose to radiate, which is what we did for Jonas. Hopefully this does the job. If not, or if a patient relapses, they have are given a control phase, which is what Jonas had in the spring, to try to put the cancer back into remission. When that doesn't work, there are a series of options: Clinical trials and stem cell transplant. Clinical trials are just that: trials. A study of a particular protocal that has shown good results in the lab (possibly in rats, etc) that needs to be tested on a specific group of individuals to see if it does indeed work in humans. Essentially you are a guinea pig, but often times they produce very beneficial outcomes. Not all trials are offered at all hospitals. Some hospitals only offer two or three trials at a time. And not every patient fits the criteria for each study. Once a patient is in the clinical trial phase of their cancer, parents have to become vigilent researchers of the latest and most effective options. It is up to the parent to search for the most promising trials, no matter where in the country they are being offered. We were offered a clinical trial at Children's Mercy in June but after much investigation we determined that the particular drug they were testing was not what we wanted for our son. It's part of the reason that we sent out for second opinions and began searching for a trial like the one that is now being offered.
When last I wrote, we had hoped to be on a flight to North Carolina this weekend to jump right in. When we heard from our team there on Wednesday of this week we found out that we might not need to fly to NC to begin this clinical trial because it is also being offered here in Kansas City at Children's Mercy! This was exciting news! Unfortunately the excitement was short lived as we were informed by Children's Mercy that they would not let us enroll in the study here because we had gone to recieve treatment elsewhere and that they do not take patients back. You can only image our surprise and how that does not sound like it is in the best interest of the patient. And with a basic understanding of how many parents take their cancer kids to other hospitals for procedures and trials that are not offered at their hometown hospital (much like the proton therapy we found at MD Anderson that kept Jonas from being so damaged and disfigured), we are stymied to even think that this might happen to other kids in this situation. It just seems highly unethical. We have had our ups and downs with our hospitals and doctors but I am very careful to always give them the benefit of the doubt... and try to never put in print publically our grievances with them. But this is really rubbing me the wrong way. As you can imagine, we are trying to keep as much of this out of Jonas's head as possible, but he too wants to know what the hold up is and it has him tied up in knots. He knows more than anyone that every day is precious.
We have begun working with a patient advocate to get this resolved at CM and should find out more on Monday. If it does not play out the way we want to, there are other hospitals in the country offering this same trial as near as St. Louis that would surely take him. He is a prime candidate for the criteria they are recruiting. That is why I have had a hard time getting back to our friends who have been offering to help with meals and travel arrangements. Thank you Greg Short and Doug Laird for being patient with us about the flights.
And to Amy Westacott, Megan Web, Stacy James, Kelly Collins, Patty Voss, Becky Morales and all our friends at Woodland Elementary thank you for keeping your eye on little Blaire and your plans to make her feel like family through the upcoming hoiday. She complains of "feeling shaky" more than usual lately and I know that alot of that is her inability to express her emotional stress. We appreciate your kindness.
Last night Jonas and I got the opportunity to go out for some major stress relief, Jim Gaffigan live at the Midland! Sometimes laughter really is the best medicine! Jonas has a delightful sense of humor and I treasure our special date night. Comedy has always been the one thing that has kept us in good spirits. On most of our many, many, many drives to the hospital, when the mood would be grim, Jonas would type his favorite comedians names into Pandora on his iPad and we end up laughing all the way to the chemotherapy infusion bed. Jim Gaffigan is one of his most favorites. Thank you Jackie and Jerry Martin for the show tickets. We had a great time in true Jonas style!
Tomorrow, Sunday, Jonas is going to try to take in a Chiefs game! Thank you Ken, Kim and Josh Hill. He is really jazzed about it and I hope it all goes well. We are planning to bundle that guy up and send him with all sorts of warmers. He has so little body fat right now, I'm curious to see how this works out. Nonetheless, Go Chiefs!
And last but not least, this past week the black and gold choir once again performed Fight the Fight. They did a superb job! Thank you Holly Dahn and PLMS students! Here is the link to see the performance. I love the choral version just as much. Don't you? Watch and see! http://youtu.be/HWgg9dRrh2U

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4 Message(s)

Posted 31 minutes ago
Stay strong and keep fighting. We are praying for you. Josh is excited about tomorrow.
Posted 1 hour ago
I've heard and experienced a lot of bad stories about hospitals, but that takes the cake. You've done an amazing job searching for the best options for Jonas. I continue to keep you in my thoughts.
Posted 4 hours ago
I cannot even fathom all that you are going thru and have gone through...and then for CM to do this...doesn't really surprise me after all of our hospital doings lately and they are just a mere fraction of what you are trying to wade through - my heart goes out to you. Keep after the advocate at CM - they were a BIG help to us with Christina's ordeal there and got things resolved fairly quickly... So happy you two had a good night out and could laugh and enjoy spending time together! Jonas is ALWAYS in my thoughts LOVE YOU ALL!
Posted 6 hours ago
Dearest Kristin: I love you sooooo very much. I pray for you and Jonas all the time. There is just not a day that goes by without taking time to ask God for guidance and support for the both of you. I hope that you will find it in your heart to come be with us on Thanksgiving with Dad. You can always stay here. I would like that very much.
As far as Mercy in KC not allowing you the opportunity to do chemo there I am appauled to say the least. I think you need to seek legal advice. Just my opinion. I hope that you already have.
Will always be here if you need anything. Anything at all you got it..... Baby.
You are my oldest Baby sister. And you are special. Greatest mother I know. give Jonas my love. Hope to see you all soon.
Welcome, angie

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About Jonas

Jonas is 15 years old now and was admitted to the hospital two
years ago to the day....with Ewings...

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