Friday, February 22, 2008

5:07 AM 2/22/2008

Good morning. Well, I am ecstatic to say that Sydney's CT scan came back clear. This is a pretty good indication that we don't have any soft tissue tumors floating around her body. The CT showed a little thickening in her sinus cavity but this is consistent with just about every CT scan we have ever had. Sydney continues to be full of snot. Go figure! I could have told you that on many different levels. This is not particularly problematic unless we restart active therapy or have a port placed. Assuming that is that case, we would probably have her ENT do a roto rooter job on her sinuses. This would hopefully reduce her risk of sinus infections, ear infections, and the evil fever. You may remember her days with a port. They were filled with many hospitalizations for fevers. These were usually related to existing ear or sinus infections but the team was never willing to let us risk not hospitalizing her. The risk of a line infection was too great and things could go south very quickly. As we prepare to move forward we would want Sydney to be able to stay out of the hospital as much as possible. So, if we go in that direction, we will try to coordinate our line placement with our ENT to reduce Sydney's anesthesia exposure - no reason to anesthetize her twice if we don't have to. So, anyway, the clear CT is tremendous news. It indicates that if this is indeed disease then it is a very small disease load.

On Monday morning we have scheduled Sydney to have another set of marrow aspirates and biopsies. I think I mentioned this before but we will be sampling 4 sites, 2 in front and 2 in back. The reason we are doing this is because we want to increase our chances of finding disease. We want to give the experts every opportunity to find something wrong. Of course, we still hope that they will not find anything. If they find anything then this, of course, means a pretty definitive relapse. If they don't or if the results are murky then I think we will need another long sit down. Furthermore, we have now shipped her MRI results to 3 other experts around the country to see if others feel that this is as cancer-ish as Dr. Gillespie does. It will be based on all of these results in the week(s) to come that will hopefully help us to come to some clearer conclusions.

Now, let's assume the marrows come back negative from everywhere. That is a best case scenario. Can we believe it? Yes, I think we will have a high lever of confidence that the report from Genzyme is a false positive. This would be great news. However, in and of itself, it would not explain the radius. If anything it would make it murkier. In this case our future would depend on the readings of the MRI. Unless someone can come up with a pretty convincing differential diagnosis (something other than neuroblastoma) then I think we have to push forward. I know that Dr. Eames would probably still be hesitant but, what does she know? She only wears that white coat, went to school for all of those years, and spent the last 20 or so dedicating her life to pediatric cancer. I, on the other hand, am a paranoid schizophrenic dad with almost five years experience of being completely nuts. I think I know what I am doing here. Clearly, I have advantage.

Okay, all joking aside. It would be an interesting conversation. These findings would dictate caution but until someone can give me a good argument of what this can be - other than neuroblastoma - I am going to focus on killing the stuff as fast as I possibly can. I am sorry. The argument that we don't know what it could be because normal kids don't get MRIs has run its gauntlet with me. I need to hear and understand a rational explanation of what this could be (other than neuroblastoma) to slow me down. The supposed disease has not yet gained an upper hand and I do not want to wait to give it the opportunity. I truly believe we can beat it now if we can get on top of it before it spreads. The problem is that I don't know at what point in time the disease will cross that line - a day, a week, a month, a year. Don't know! I do want to get to it first though.

As you can tell, I am in moving forward mode. I have to accept that this is neuroblastoma so that I can get everything into place as quickly as possible. It is nice to be cautious and concerned but when we are ready to pull the trigger, I want the scans in place, the doctors in place, the travel in place, and the drugs in place. I want to be ready to go fast and hard. I don't want to have to wait for days and weeks for committees to debate or for protocols exceptions to be agreed upon. I want to go while we still have the upper hand. It is for these reasons that I have to move forward now. Fine, we can sit and debate degrees of grey in this diagnosis but don't think for one minute that I am not organizing in the background. I am hitting the ground now.

So what happens if we get a good differential diagnosis? What happens if we discover this is something else? Well, I get to call a bunch of people and say "Um, ah well, I am so sorry but it does not look like my daughter has the ol' cancer after all. So sorry for the inconvenience." Something I would gladly do in a heartbeat. Trust me, I am hoping and praying. I just don't know how realistic that level of clarity is.

Hoping and praying for the best but preparing for the worst.

It is my purpose we are talking about!

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