In March, we did cancer scans and found that the lesions on Clayton's liver that we had been watching had grown slightly and he also had a spot on one of his lungs. The good news is that while these results showed in the CT, they did not show in the MIBG which is the test that looks for neuroblastoma specifically. The doctor felt the spot on his lung was likely just from him having been sick in the previous month. So we had started spreading our scans out to every 6 months, but now we are moving them back up to every 3 months per the doctors orders. Yuck. Most people's question here is when are we checking the lesions on his liver again? June. Why so long? If we checked it again to soon and it was growing slowly, we might not be able to see that on the scan; giving us a false outlook. By waiting three months to scan we are giving the lesions time to see growth...if they are growing slowly or at all. If they are growing quickly, we would likely see symptoms quickly at which point we would know to scan. So our wait is almost up. So far, we have not noticed any symptoms that might be indicative of the lesions growing rapidly.
His kidney is another complicated issue. During the second half of March we went in to have the stent in his ureter replaced. We came out with the same stent we went in with. Unfortunately, the doctor was unable to replace the stent as he had hoped. He was concerned if he was any more forceful he would potentially perforate the ureter causing bigger problems. So the doctor opted to wait until he could have an extra set of expert hands to help him. Those would be the hands of the same doctor that came to assist a little over a year ago from Orlando. Originally, that doctor would be coming here by the end of May and we would attempt everything all over again. Then we were told that had been delayed due to a conference and it would now be sometime over the summer. I have been waiting to hear from them on scheduling that. To complicated things further, when we attempt to replace the stent again, if they cannot get it, then Clayton will have to get a nephrostomy tube until we can schedule a larger more complicated kidney surgery to try and correct the ongoing obstruction issue (which would need to be done in Orlando). Wait for it...And I just found out this morning the other doctor is leaving July 1st to go to another hospital. I don't fully know what this will mean for everything yet. I do know that if that doctor is going to try and replace the stent before he leaves then he would do so in Orlando. Meaning we could be headed to Orlando in June for either a minor outpatient procedure or a massive operation...no way to know until they get in there.
SO, that's what's up with us. How about you?
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