OK--we are on the road towards home. Today was quite a surprise. We were fully expecting that the oncologist was going to want to start a round of chemo. We have been told for years that the tumor in Conors cavernous sinus is essentially inoperable because it would be too dangerous and that any growth at all in the cavernous sinus would put him back on chemo. However, now they are talking surgery. The neurooncologist sat down with the chief of neurosurgery at CHOP, and he believes he can safely debulk the tumor in the cavernous sinus (good news!). The thing is, there is no effective chemotherapy for the types of tumors Conor has. The best any of the options can do is slow growth, so if the goal were to just try to reduce the number of surgeries by slowing growth, then that may be the avenue to take. However, because the cavernous sinus is more complicated, they feel that the results would be much better by dealing with it surgically than just continuing to try and slow growth, and they feel that because the tumor has been there so long (it showed up when he was 8 months old), it will be easier for them to work with. There are a few chemo options (clinical trials) out there that should have data coming in this year that could be options for later. But they do not have information back on the effect of the chemo on the retina, which is pretty important info for a child with one eye. So, for now, the plan is to hold the line and get prepared to move forward with surgery. We will come back to Philadelphia in 3 months for another MRI and also an MRA, which will show if the tumor is restricting blood flow to the brain. We do not want to rush in to this surgery. Further growth or restriction of blood flow will make it a necessity though, so they need to be ready with a plan. So, that is where we are. They are discussing his case in the neuro conference tomorrow to get input from the whole team. Thanks so much everyone for your support and prayers! The news that this particular tumor had grown was tough to hear. It is not fun to see that concerned look on your oncologists face again. I so wish that there were better options for treatment for kids like Conor. For now, we are thankful that he doesnt have to go through chemo! And thankful that some of the best doctors in the country are coordinating his care! They all let him know how much they care about him too, and tell him every time they see him how amazing he is. We are truly blessed!
Posted on: Mon, 05 Jan 2015 22:16:22 +0000
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