I don't know how to begin. So I guess I will just jump in.
The thing I dreaded has happened. Nick is NOT in remission. When I met with the oncologist this afternoon, he told me that since our phone conversation on Monday evening things had changed. Sometime since Monday, the pathologist was reviewing all of Nick's previous pathology reports, especially the one from the biopsies used to initially diagnose the PTLD/lymphoma 4 years ago. During the review, the pathologist discovered two very specific tests that had not been run on the biopsy this time that were done in the past.
I am going to try to keep from getting too technical, so bear with me.
One of the tests specifically looks for Reed-Sternberg cells. If these cells are present, then a diagnosis of Hodgkin's lymphoma is usually made. The pathology done four years ago showed that these cells were present. Post Transplant Lymphoproliferative Disease (PTLD) sometimes looks very similar to Hodgkin's lymphoma. Along with these Reed-Sternberg cells being present, the cells also contained the Epstein Barr Virus (EBV). That is where Nick's initial diagnosis of EBV driven "Hodgkin's like" PTLD/lymphoma came from.
When the pathologist ran this test again on the new biopsy, the Reed-Sternberg cells were found once again. These are also the only cells that contained EBV as well. This means that Nick still has EBV driven "Hodgkin's like" PTLD/lymphoma. This is the reason for Nick's immune system dysfunction. The PTLD seems to be attacking Nick's immune system.
The oncologist was very clear that this result does not mean that things are worse. He said this only confirms what he was already thinking. This comes as no surprise to him. The surprise was the absence of the cells in the initial pathology report from Monday.
On my side of things though, it feels like the world has tipped again. The kids and I really enjoyed living in the land of remission, if only for a few days. The three of us are trying to handle this set back. Nick is dealing with some sadness and confusion. Kacie is sad and afraid. I'm feeling deflated.
The treatment plan is undecided at this time. The oncologist wants to take some time to do some research on different treatment plans. From what we discussed today, the chemotherapy treatments range from mild (like what Nick had 4 years ago) to very aggressive (like what Nick had when he was a baby). The benefit will have to out way the risk in whatever treatment the oncologist comes up with. He also said that he may decide not to do anything and keep going the way we have been...watching and waiting.
Nick tolerated the large dose of IVIG very well today. His IGG level was very low once again today, and that's only three weeks after his last dose. Hopefully, today's mega dose will give Nick better coverage. The oncologist will check Nick's IGG level before the next dose is given to see how effective today was.
There is so much more that I could go into, but I'm not right now. My mind is just swimming with information and I am overwhelmed with different emotions.
Thank you for the thoughts and prayers today.
I just don't know what else to say. Please don't be discouraged and lose faith that Nick can be healed. I am trying hard to keep from falling into that same place. I do believe that Nick will be healed and I will keep praying to that end.
Right now, the kids and I are focusing on remaining...
In His Grip!