-------- Original message --------
Date: 11/15/2013 10:54 PM (GMT-06:00)
Subject: Fwd: (no subject)
Posted 9 hours ago
In June, our doctors at Children's Mercy told us that Jonas was chemo-resistant that his prognosis was fairly grim. That is when we put himon the Ketogenic Diet.
During the two months Jonas spent on the diet we sent his information to two other doctors to get a second opinion on how we should proceed. One of the oncologists is a pediatric Ewings specialist, who agreed to see Jonas in North Carolina and we had his next scans there in September. As it turns out, after those three months off of any medical treatment and two months on the ketogenic diet, his scans revealed that there was no cancer in his head or neck - which is a huge development since his scans in June! Nothing lit up in his head. Not his primary tumor. Not the secondary tumor. Not the tonsils, or any of the lymph nodes. Nothing. The only cancer they could identify was in his lungs. And we were elated! None of our doctors could say why that would happen. Cancer doesn't stop in one place and just start up somewhere else. It grows and spreads. So with no other explanation as to why the cancer would be gone from his head and neck, we can only discern that it was indeed because of the diet. While that is fantastic news we still had reason to be worried. The cancer in his lungs (also Ewings Sarcoma, not a different kind of lung cancer) had grown pretty substantially. Where there had been four spots, there were now six. And while they were just measurable in June, several of the spots had become the size of large strawberries.
The game plan we worked out in September was to continue on with the ketogenic diet, but also to make another attempt at chemotherapy in hopes that the tumors in the lungs would be more vulnerable at this point. There are so many different kinds of chemotherapy and what works for one patient doesn't necessarily work for another, so it might just be a matter of finding the right one before it's too late. Jonas had his first round of chemotherapy in North Carolina and we came back to Missouri. Our oncologists here would administer the chemo once every other week and after four rounds, we would retest with a chest CT. If there were any growth we would know that this was not the one.
Jonas was able to go to school intermittently these past few months. In the most recent weeks, he has developed a dry cough and has been complaining of stabbing pains in his ribcage. There were several very acute attacks where it hurt him to breathe, yawn or move, and once he even stood watching tv for about an hour and half because he it hurt him too much to sit or lay down. He was able to pinpoint exactly where he felt the pain, and that would turn out to be a forewarning of things to come.
On Monday, Jonas had his chest CT and on Wednesday we found out that there is "progressive thoracic and metastatic growth", pretty much in the exact places that he had felt the stabbing pains. The cancer in his lungs has grown and spread. That tells us that this is not the right chemotherapy for him and we need to try something else quickly. Initially, it has been like grasping at straws, just floundering, as we are counseled to balance aggressive treatment with quality of life issues, and/or choose between the two. Big sigh. Those issues are difficult enough to wrestle in your own head, but to have those conversations with your spouse are very close to relationship-ending conversations. You are dissecting something no one even wants to acknowledge and it is dangerous territory.
Yesterday we were greatly encouraged by exciting news from our doctor in North Carolina. They have begun a new program in Personalized Medicine, something completely new in cancer treatment. They would like Jonas to fly to NC next week for a biopsy of the tumors in his lungs. They will then send the sample away to have it analyzed to find out exactly which kind of chemotherapy would work for his type of cancer and dna. How great is that?! It is virtually unheard of in cancer treatment, but our nurse practitioner tells us that within the next two years this will be the way they treat cancer exclusively. Our dear friend, Mark Hoffman, just recently took a position with Children's Mercy to incorporate something very similar and assures us that this is utterly fantastic news! So we are waiting for them to get all of their ducks in a row and Jonas and I will be headed there within the next two weeks for approximately ten days. While we are there we will look at the possibility of participating in other proactive measures including something called SBRT, a form of radiation.
We will probably be staying once again at the Ronald McDonald house in Charlotte and once again this will be a financial stretch for us. We could really use some help with flights. If anyone has frequent flyer trips they can part with, we would be so grateful.
Thank you to everyone who has downloaded the Fight The Fight song. All the proceeds go to help care for Jonas. Thank you, Hoffman family. And thank you to Holly Dahn and the Pleasant Lea Middle School Black and Gold choir! You guys are awesome. I have several pictures to share in the gallery, here.I have been fairly silent with my CarePages posts, partly because continuing to put one foot in front of the other for us has been a bit of a struggle. There are so many people behind the scenes continuing to keep us from going under and I have neglected to thank them in the past few months. I just want to tell you all how much we love you and are grateful for your support. Jane and Kurt Cavanaugh, Doug and Christine Laird, Paul and Becky Morales, Shawn and Lynda James and our entire baseball team, Amber Dahm, my sister Elizabeth and her family, my dad Don Nolte, Shelli Cornell and Vicki White, Vera and Zach Dowdle, Jessica Bobal, Annette Honey, Nicole Breshears and Heather Lanigan, and Reg in Ireland. And a shout out to all my St. Louis friends sending us bits of goodwill through the mail - Linda Graybel, Bob Fellner, John Moody! And all the emotional support from so many others! (Andrea, Janann, Jef, Jerry, Trina Mackey and all my cousins just to name a few.) Thank you for keeping our spirits up! Sometimes it is the only thing keeping us going.You know, when Jonas was a small child, he had an issue with being restrained. From the day we brought him home he hated being tightly swaddled. It took him ages to get used to being buckled into his car seat without lots of tears. And as he got older, he absolutely hated being held down or trapped by his older sister when they played together, almost to a point of panic. It actually kind of paid off when he reached the upper years in elementary school and started wrestling. Boy. He did NOT want to be pinned down. He was long and lanky and initially had trouble muscling the other boys into a pin, but they just could not keep that kid pinned down. He was a fighter. And that seems to be just where we are today. He may be down, but he's not out. And if anyone can squirm his way out of this, it's Jonas.
Fight The Fight, babe!
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About JonasJonas is 15 years old now and was admitted to the hospital two
years ago to the day....with Ewings...ADVERTISEMENT