Tumor Board

Dr. Louie called us this afternoon to tell us the results of the tumor board. Sounds like we still have a ways to go. At the tumor board they got a chance to review all the scans from the beginning and this time. There were Pediatric Oncologists and Surgeons and Radiologists and Pathologists in on the meeting. They were even satellite connected to doctors in Spokane and Anchorage. The good news is that the primary tumor in Kelby's adrenal gland has shrunk way more than the our doctor had thought originally. The first CT scan at Children's hospital showed that the adrenal gland tumor was about 5 cm in diameter and now it is only 2 cm. This means that she is responding very well. The problem with proceeding to surgery or the stem cell transplant right now is that she isn't in "complete" remission yet. They are concerned about the cancer in her boney areas, especially her jaw. It sounds like the other doctors (especially the doctor in charge of the stem cell transplant) want Kelby to get a couple more rounds of chemotherapy before the surgery and transplant to see if they can get better remission. The bone scan that she had done this month still showed active spots on her femur, hip, and jaw. Since the bone scan shows actively growing spots in the bones, this activity could either be cancer or it could be healing. They will be doing another test soon on Kelby called an MIBG test. This test is like a bone scan except the radioactive substance they give her will go especially to Neuroblastoma in her body. This may help to determine if the activity in her jaw is still cancer or not. There is a balance that must be figured out here. This cancer tends to stop responding to treatment after a period of time. They must do all they can to get her into "complete" remission before the transplant. But, the danger lies in waiting too long. If she stops responding to treatment, continuing may be pointless. We must walk on this fine line. It seems like this is more of a worrisome issue with Kelby because she has the N-myc amplified gene that makes the cancer grow faster. So the only thing that we know now for sure is that we are in for another round (#5) of chemo later this week. She will also be having the MIBG test done soon. Hopefully that will show that the active spots are just healing, but if not, we'll be doing another round(#6) of chemo later. After that the doctor will have the the scans done again and decide if she is ready for the surgery and transplant. The additional chemotherapy rounds stress me out, but mostly because that pushes the transplant back closer to when the next baby is due. I know that everything will work out okay though. I just need to give it over to God and not let it worry me. Worrying won't change a thing! I know we have lots of people to support us when the times comes. I hope this all makes sense. If it doesn't, please feel free to write questions in the guestbook. I am sure that I have left something out. It is a lot to take in all at once.