Yesterday the surgical team visited Marks room and discussed taking out the feed tube in favor of a J-Tube in an attempt to nourish the upper colon which has become dormant. This is certainly a necessity to insure that the colon survives.
Tuesday, December 29, 2009
It is felt that a surgical solution to the Spindle Cell involvement is not realistic. A bowel transplant requires "clear margins" in order to insure that the transplanted tissue bonds and survives. Evidently there is no clear margin.
The oncology team still awaits the analysis of the pathology slides sent for comment. Still there is definitive diagnosis and therefore no protocol for treatment.
After much research it is evident that a disease of this nature is very rare in children and the cases reported are few and far between. One thing that did come out was that there have been some anti-retro viral drugs combined with chemotherapy that have yielded good results. This might be a possibility pending the actual definitive diagnosis.
For all who have rallied to help this family.....God Bless You. As you can imagine, the expenses associated with this case are going to be extreme and the effects on the Jeanes family will be felt for a long time to come.
If you can help financially, a charitable donations account is set up at America First Credit Union for Mark. The account is listed as the, "Mark Jeanes Charitable Donations Account" and is accessible at all AFCU branches.
On Christmas Day a miracle birth happened at PMC both mother and child were for all intents considered clinically dead but both were saved. Maybe there can be another miracle called the "Marky Miracle?"
Love to All
Ken and Vickie Crocheron
Posted by kennethcrocheron at 9:07 AM