I honestly do not know whether I can actually justify calling them scan weeks any more. I mean, the way we have diced up the scans it really isn't an entire week of activities any longer. Let's just hope we keep it that way! Regardless, this morning marks the beginning. Sydney has now filled herself up with enough SSKI to protect her thyriod and is ready for her MIBG injection today. The sequence of events should be something like this. We will arrive at the hospital at about 8:00 AM for registration. By about 8:30 AM she should begin to chug the contrast. She will get to do this for roughly 2 hours. In the meantime, we will also be trying to get an IV placed. She will need that on 3 separate occasions today. Her first letting will be when we drain approximately 20 cc of blood which needs to be sent down to Houston. This is for some additional follow up testing associated with the vaccine trial. The next use will be for the IV contrast that they push during the CT scan. I really have no idea when that is scheduled. However, if we are drinking contrast between 8:30 AM and 10:30 AM, I am guessing that she will be receiving the CT sometime between 11:00 AM and 1:00 PM. All of this fun will be followed by the MIBG injection which will happen sometime after the CT scan. If all goes well, we will pull her IV, make a stop by the gift shop (bribery), grab a bite to eat, and head home. That is a perfect case scenario.
So, what am I worried about today? Does everything count? First, and foremost I am praying that we see no solid tumors. That is a obviously a biggy. Secondly, I am really, really, really hoping not to see any enlarged or questionable lymph nodes. I am praying for a nice clean scan with just the usual comments on her undersized kidney (due to neuroblastoma) and her sinuses. If I may even be so bold, I would also hope to see some improvement in her sinuses as I have spent the last 6 months pumping her full of a 3 drug combination to get them cleared up.
Everyone always asks - when do you expect to get the results? Well, I hope not to get them today. That is too fast. When we get them that quickly it seems that is always a sign of bad news. It would be reasonable to hear something tomorrow after the MIBG scan. However, I am guessing that Friday would probably be the most reasonable time to hear something.
Well, I had best be off. The rugrats are starting to scurry. Graham has already commandeered the remote and turned on SpongeBob. From the sounds of the thumps coming down the stairs I am guessing that Ainsley is only seconds behind. I have a mountain of email (as usual) and am in charge of getting Sydney to the hospital by 8:00 AM. It is time to get moving.
I am worried but we will just keep putting one foot in front of the other.
We are purposefully watching and waiting.
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1 comment:
You're on our minds, Mark and Lynley (and Sydney).
Jake and Lynita
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