Jul 27, 2010 - 2:20 pm
Looking to hear from others who have been diagnosed with PXA tumors. My son was diagnosed at the age of 15 with a PXA Grade II, but then after a second opinion after his 2nd surgery, there were concerns for a possible higher grade neoplasm (Grade III). He had 6 weeks of radiation (tomotherapy) and chemo (temodar) which ended in August of 2008. He had MRI's every 3 months for a year after his treatment ended and then it went to 6 months (all his MRI's have been clear....yeah!!!) Anyone wishing to tell me of their medical journey would be greatly appreciated of those who are survivors of a PXA and those families who have lost their loved ones to PXA tumors. There is so little information out there on this type of tumor and as a mother of a son who is a survivor, my mission is to stay ahead of the battle and to know as much as I can about PXA tumors. Anyone interested in reading my son's medical journey may do so by entering the website caringbridge.org and enter tylerborchardt. And I have more of his story in detail on CSN. He is now 18 years-old and is looking forward to college.