- Nov 4, 2012
- 461
- 104
- First Name
- Jessica
Here is the latest update on Caleb's extra innings with cancer. I'm bumping this thread because the family is likely going to be separated to win these extra innings while Caleb (and likely Beth) head out of town for weeks or months to continue fighting Caleb's cancer. That's expensive. Don't forget to call out members for their donations
Donate what you can, when you can. Send positive thoughts always.
From the family:
It came earlier than we expected, but we've gotten word that Caleb did not get a spot in the trial at St. Louis Children's Hospital. This trial has been opening a limited number of slots periodically, and this time it opened and closed again in 60-90 seconds.
So, where do we go from here? As of right now, there are only two trials left for us to try. One of them he has to be 13 to qualify for (which happens in a little over 7 weeks), and the other one requires that his tumor be GD2 positive. We are in the process of determining if his tumor has that genetic marker. Neither of the trials are offered in town, so they would both require traveling to a different city for treatment for what could be weeks or months.
To bridge the gap, we are starting another more experimental medication that our amazing doctor at Mercy convinced the insurance company to cover called pazopanib. This drug has had some success in adult sarcomas, and while we don't expect it to be something to cause the tumors to disappear or even shrink, we would consider it a win if it held them stable for the next 7 weeks. We may be able to do some more radiation as well, that is still to be determined.
Caleb continues to have the most amazing attitude and positive demeanor. He has been going to school whenever possible and has great energy and appetite. His port stopped working this week, and we are prayerful that it will miraculously start working again so we can avoid another port surgery. The idea of that surgery is causing him great anxiety.
We are so thankful for all the ways you continue to care for us. From meals and gifts to encouraging notes and calls to finding ways to simply make us smile, we are so grateful for you all.
Donate what you can, when you can. Send positive thoughts always.
From the family:
It came earlier than we expected, but we've gotten word that Caleb did not get a spot in the trial at St. Louis Children's Hospital. This trial has been opening a limited number of slots periodically, and this time it opened and closed again in 60-90 seconds.
So, where do we go from here? As of right now, there are only two trials left for us to try. One of them he has to be 13 to qualify for (which happens in a little over 7 weeks), and the other one requires that his tumor be GD2 positive. We are in the process of determining if his tumor has that genetic marker. Neither of the trials are offered in town, so they would both require traveling to a different city for treatment for what could be weeks or months.
To bridge the gap, we are starting another more experimental medication that our amazing doctor at Mercy convinced the insurance company to cover called pazopanib. This drug has had some success in adult sarcomas, and while we don't expect it to be something to cause the tumors to disappear or even shrink, we would consider it a win if it held them stable for the next 7 weeks. We may be able to do some more radiation as well, that is still to be determined.
Caleb continues to have the most amazing attitude and positive demeanor. He has been going to school whenever possible and has great energy and appetite. His port stopped working this week, and we are prayerful that it will miraculously start working again so we can avoid another port surgery. The idea of that surgery is causing him great anxiety.
We are so thankful for all the ways you continue to care for us. From meals and gifts to encouraging notes and calls to finding ways to simply make us smile, we are so grateful for you all.
