I probably should have written a bit before today. Quite frankly, I just did not know what to say. In the meantime we have completed Sydney's MIBG, taken a mini-vacation to Great Wolf Lodge, and received most of our results. It has been a roller coaster of emotions.
I guess we should start back on Friday afternoon. I should tell you that as a result of last week's ridiculous scheduling of Sydney's scans which subjected her to multiple pokes unnecessarily, I have lost all modesty when it comes to advocating for Sydney. I have always been the polite one and even when I know things are not going correctly (as long as it does not hurt Sydney) I am always willing to follow directions and be relatively accepting of the bureaucracy. I would go along with things even when I knew them to be completely wrong. I always thought that the process was the way it was for a reason or because things had to be done a certain way. After watching this go on for almost 5 years both with by child and others the switch finally flipped. I am still polite by I am firm and resolute. I will no longer just follow. I have found that it does no one any good. Sometime when I have more time I will tell you some stories.
The new me came out of the box on Friday while we were waiting for Sydney's MRI. As I was checking her in they said "anesthesia" as though she was scheduled to get some. I said 'no.' She looked at me quizzically and then closed the window and talked to someone back in the room. You see, the funny thing is that they had called two days prior to talk to us about anesthesia. At this time I told them Sydney did not need it. After a thorough discussion I reluctantly agreed to NPO her (just in case), however, we were fundamentally in agreement that she would not need anesthesia but that we would prepare her just in case. We had devised a plan.
A few minutes later, a nurse came out to meet with us in the waiting room. She asked me if Sydney would be needing anesthesia. I said, "No." She then proceeded to tell me that unless Sydney had anesthesia that we would need to reschedule. Knowing how difficult it was to get a slot at the MRI and knowing that it could be weeks, I said, "No." The issue was that the radiologist was not there and without him there was no one to oversee the contrast that she would receive. Had the anesthesiologist been caring for Sydney he would have done the job. I said that is fine. Have the anesthesiologist do it. He was still there. He was planning on anesthetizing Sydney anyway. She became difficult. I did not. She tried to explain the process again. I explained that I had NPOed my daughter all day. I followed every direction and we weren't going to reschedule due to the back office miscommunication. The next thing I knew she was being called over to the window. They mumbled for a bit. She walked over and apologized and explained that they had not received the information. Sydney would be scanned as planned - without anesthesia.
The point here is that if I did not stand up and say something Sydney would still not be scanned today. We would have left and she would have been the one that lost - all because of some back office miscommunication that had nothing to do with her. I have put my foot down, politely, but firmly.
Okay, so we proceeded with the scan. Amazingly Sydney stayed still through the entire MRI with her arm straight over her head. I could not have done it, but she sure did. We were enormously proud and a little gratified after all of the discussion about anesthesia. To be honest, there was little doubt in my mind that she would do it perfectly but, after watching all of the radiology personnel giving us that look that said there was no way she could do it, I was just that much more proud.
Ordinarily, I would go onto tell you about our incredible time at Great Wolf Lodge but I can see that there is still too much to cover so that will have to wait for another day. I have to get to the results. Up front, I will tell you that they are mixed and we, once again, find ourselves in a very strange place. It turns out that Sydney's bone marrow aspirates and biopsies were absolutely clean. There was no evidence of disease. This is great news. Today we should be receiving the results on some more sensitive tests of her marrows which everybody is preparing us to be positive for neuroblastoma. I have not done the research on the lab that they are getting these results from but, from what we understand, nearly everybody receives a positive result from whether they have neuroblastoma or not. So, yep, we have that to look forward to. But still, we have the existing report to be happy about.
The MRI was a different story and although it did not come out and scream neuroblastoma it did not do the opposite either. It is a mixed result and although there is clear evidence of abnormality its meaning is questionable. You see, part of the report is very "cancer-like" and part of the report is not. Here, I will show you the report so we can discuss it. Enjoy.
CLINICAL HISTORY: NEUROBLASTOMA, QUESTION OF ABNORMAL BONE SCAN INVOLVING THE MID RADIUS TECHNIQUE: Extended MRI of the right forearm was performed in the coronal, sagittal, and axial planes using spin echo technique. Sequences included TI weighted STIR, T2 weighted, T I weighted fat sat with 3 ml of IV Magnevist. A total of 223 images were obtained in the evaluation.FINDINGS: The area in question demonstrates abnormal increased marrow signal on the STIR sequences involving the entire proximal third of the radius. Furthermore, there is a small focal area off the medial aspect of the cortex at the junction of the middle and proximal third of the radius that demonstrates a small area of protrusion, with central high signal and seems to be related with the inner osseous membrane. No edema is noted in the adjacent soft tissues and no abnormal enhancement with contrast administration is identified. The overall appearance is not normal but is not particularly good for involvement with metastatic neuroblastoma in that the cortex in general of the proximal third of the radius is intact. Furthermore, no adjacent edema is noted. This latter finding would also go against trauma and infection. The significance of the findings are uncertain, but does not appear to be aggressive. A follow-up exam in 6-8 weeks to determine if there has been a progression would be worthwhile.OPINION: ABNORMAL AREA INVOLVING THE MEDIAL ASPECT OF THE JUNCTION OF THE MIDDLE AND PROXIMAL THIRD OF THE RADIUS WlTH ABNORMAL MARROW SIGNAL BUT WlTH NO ADJACENT SOFT TISSUE EDEMA AND NO DESTRUCTION. THE FINDINGS ARE OF QUESTIONABLE SIGNIFICANCE BUT A FOLLOW-UP STUDY WOULD BE WORTHWHILE.
As you might expect, I have spent most of the weekend studying this report and doing research. The crux of the report comes to some contradictory findings. First, the abnormal marrow signal is cancer-ish. However, it is also infection-ish and trauma-ish. There are all kinds of studies on this but the fact that it is a large area of abnormal signal actually points to a higher probability that it is injury or infection related. However, you will also note that there is no indication of injury. The really confusing part of all of this is the boney protrusion. This is strange in that cortex is intact. Furthermore it is a protrusion and neuroblastoma is a predominantly osteolytic (bone destructing) process and I am confused by that as well. Finally, there is no edema in the soft tissues next to this protrusion which is normally seen with cancer, infection, or trauma. It is a very strange result and not one that I am particularly comfortable with.
I happen to know a little bit about how cancer (neuroblastoma in particular) metastasizes to bones. In fact, I would even go as far as to say that I know about all that has been printed. I know exactly what is known about how neuroblastoma seeks out bones and how it infiltrates them. What I know less about is how neuroblastoma leaves the bones. For me this is the big unknown. Without this picture clear in my head it is hard to truly make an informed decision. I need to figure out what is going on in that bone. Regardless, we are in a holding pattern until we find out more. I have emails out to just about everyone I can think of to come up with a plan. Unfortunately, I just don't know that they will have an answer either. We are all in a quandary.
Today, I am confused by my purpose.
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