Here is the list of things we were worried about yesterday:
1) Possible GVHD of the gut and or sinuses 2) Possible infection by something in the herpes virus family (EBV, CMV, etc) 3) Ann running a low grade fever 4) Ann losing weight because of lack of appetite and diarrhea
After a visit with the attending transplant physician and the head and neck specialist this is what our current list looks like:
1) Possible GVHD of the gut and or sinuses 2) Swollen tonsil 3) Secondary Lymphoma caused by a virus like EBV 4) Recurrent but isolated ALL 5) A 5mm nodule found in one of Ann's lungs which could be anything from lung cancer to a fungal infection 6) Possible infection by something in the herpes virus family (EBV, CMV, etc) 7) Ann running a low grade fever 8) Ann losing weight because of lack of appetite and diarrhea
I'll try to cover these point by point, but honestly I am pretty tired and a bit despondent. MDA is on a "fishing expedition". Which means that they understand that why Ann came back (fever, diarrhea, etc) is normally caused by GVHD. However, as of yesterday evening they have not been able to visually identify anything that looks like GVHD after an endoscope. So they have cast the net very wide to see what, if anything turns up. This morning the attending physician delivered the above laundry list of things that they have discovered or are checking on. I'll cover the scariest first.
Secondary Lymphoma is something that can happen to patients who have had their immune system suppressed or compromised (e.g. a bone marrow transplant). A virus like Epstein Barr (EBV) or Mono can enter the body of such a person and attack a type of white cell called a B-Cell in the lymph glands. The goal of the virus is to make more copies of itself, but occasionally this goes haywire and the result is a mutation that gives rise to a clone. Which we call Lymphoma. If left to its own devices this clone will begin to proliferate in much the same way as any other blood cancer would until it eventually infiltrates the bone marrow and displaces all the healthy cells there.
Why are they worried about it? Before we came to MDA, Ann came down with a virus which presented with a sore throat, ulcer in her throat, and a raised lymph node on the side of her neck. All of these cleared up, but on returning to MDA one of the first things they did was a CT scan of her chest, head and neck. From that they learned that one of Ann's tonsils is still swollen and the tonsil is part of the lymphatic system. I was surprised to find out that Ann still had her tonsils. I thought that everyone had them removed at childhood as a routine procedure, but I guess not. What MDA plans to do about it at this point is less clear.
A head and neck specialist who paid us a visit today scoped Ann and discovered a large plug of thick yellow mucus and tissue in her sinus cavity on the left side above her swollen tonsil. When he told us about it Ann asked if he could just blow it out or extract it, because it's doing nothing but contributing to her misery.
He said no because it is possible that the leukemia that Ann went through the CBT to get rid of was in fact forced out of her bones and blood, but didn't get completely evicted. This yellow crap could in fact be leukemic cells on the lamb from the baby stem cells. Sucking, blowing or manipulating them could spread them to a spot that Ann's new immune system isn't prepared to contain them. Thus allowing them to spread. MDA plans to do a biopsy of the "snot" Monday or Tuesday. Results should take another day or two, then maybe they can extract it.
Next is my favorite so far, the Single Pulmonary Nodule (SPN). This one hit us completely out of left field and put both of us at DEFCON 2. Turns out that back in August MDA did a CT scan of Ann's chest when she was readmitted to the hospital for a little fever. At that time they found a 3mm nodule and didn't mention it to us. Now it turns out that the 3mm diameter nodule has grown 2mm or at least is being imaged from a slightly different position.
Assuming it is approximately spherical (V = 4/3 *pi * (d/2)^3) in shape it would represent about a 5 fold increase in volume in roughly 60 days! So what is it? It could be fungal, bacterial, GVHD, viral, or lung cancer.
Wow! Imagine that: leukemia, transplant and then lung cancer. If you want to know what contemplating that scenario is like go into your back yard and dig a 30 foot wide by 20 foot deep hole in the ground. Fill the hole with water and drop a 15 foot very hungry tiger shark into it. Next put a metal extension ladder in across the hole and walk out onto it holding a lamp from your living room. As the shark swims below you, have a friend or neighbor grab your garden hose and randomly spray water at you...make sure he aims for the plugged in lamp you're holding. That just about approximates the overall if not specific effect.
The attending doctor this morning seemed to think it was probably fungal, but they don't have a decided course of action yet. I'm planning to speak to Dr. Kebrieai extensively about this Monday. I have seen too many people on the net and a few here at MDA succumb to lung complications to even risk the life of my best friend in the world and soul mate on it!
So finally we come to the end of the list which seems kinda mundane now. The fever and diarrhea were the reason we came into MDA in the first place. Ann is still having diarrhea and is still periodically running a low grade fever. Some bacterial cultures have come back negative, some are still pending. The viral cultures are all still pending as far as I know (they take longer to run). The biopsy's from yesterday's endoscope will be ready sometime early next week.
I just want MDA to identify the problem so they can treat it and Ann can go back to eating. She has lost 14 lbs in the last two weeks or so and is miserable. Maybe it was wrong for us to expect a quick resolution based on the relatively smooth sailing we have had up till now, but we are getting sick of the fishing expedition.