Monday, March 24, 2014
Thursday, March 20, 2014
Deja Vous All Over Again
Vince is recovering wonderfully! He amazes me. God amazes me in His healing abilities.
We had the stomach virus pass through our house this week. This is not fun, especially if you can imagine that we have five children five and under.
Benny, Vince's baby brother who is currently five months old, seemed to have it the worst. Like totally the worst. He just would not. hold. anything. down...
To cut a long story short, we are now in the PICU at Children's Hospital with Benny. We are just two rooms down from the room Vince was in.
It's like Deja Vous all over again, and it was just when I thought things were returning to normal...
Please continue to pray for Vince and pray for Benny, too.
We had the stomach virus pass through our house this week. This is not fun, especially if you can imagine that we have five children five and under.
Benny, Vince's baby brother who is currently five months old, seemed to have it the worst. Like totally the worst. He just would not. hold. anything. down...
To cut a long story short, we are now in the PICU at Children's Hospital with Benny. We are just two rooms down from the room Vince was in.
It's like Deja Vous all over again, and it was just when I thought things were returning to normal...
Please continue to pray for Vince and pray for Benny, too.
Tuesday, March 18, 2014
Pilomyxoid Astrocytoma
Today Dr.NeurOncologist called with the final pathology results.
Vince's tumor is a Grade II Pilomyxoid Astrocytoma. Dr.NeurOncologist puts it at a 5% chance of recurrence. Pilomyxoid Astrocytomas are a relatively "new" discovery. Most occur in other areas of the brain. Dr.NeurOncologist said that because it was completely resected (doctor speak for removed), Vince has a lot better prognosis than other patients who have the same type of tumor in the usual areas since the tumor usually cannot be completely removed in these other brain areas.
It is an extremely unusual type of tumor for Vince's genetic disease, but Dr.NeurOncologist still thinks it is from it. I found two academic peer reviewed papers online that said there were only two cases of this type of tumor in patients with Vince's genetic disease. Ain't we special...
So we'll be followed by Dr.NeurOncologist... Vince will have scans every so often to make sure it doesn't come back... It ain't over... Monitoring for recurrence will be a way of life for us...
Vince's tumor is a Grade II Pilomyxoid Astrocytoma. Dr.NeurOncologist puts it at a 5% chance of recurrence. Pilomyxoid Astrocytomas are a relatively "new" discovery. Most occur in other areas of the brain. Dr.NeurOncologist said that because it was completely resected (doctor speak for removed), Vince has a lot better prognosis than other patients who have the same type of tumor in the usual areas since the tumor usually cannot be completely removed in these other brain areas.
It is an extremely unusual type of tumor for Vince's genetic disease, but Dr.NeurOncologist still thinks it is from it. I found two academic peer reviewed papers online that said there were only two cases of this type of tumor in patients with Vince's genetic disease. Ain't we special...
So we'll be followed by Dr.NeurOncologist... Vince will have scans every so often to make sure it doesn't come back... It ain't over... Monitoring for recurrence will be a way of life for us...
Saturday, March 15, 2014
Pathology
So what is the pathology? many people have asked.
On Thursday, we went back up to Children's Hospital to see the neuro-oncologist (and also went to a follow-up appointment with the neurosurgeon's PA). We had originally seen Dr.NeuroOncologist when we had first received Vince's diagnosis. Thursday, Dr.NeuroOncologist had printed out scans from the MRI from before and after the surgery. Vince's surgery was a success! Dr.Neurosurgeon had gotten all of the tumor out! The area that the tumor used to be in was now filled with fluid, Dr.NeuroOncologist said, and showed us on the scan.
Dr.NeuroOncologist was unsure of the tumor was Grade I or Grade II. He'll know in another ten days when they are finished with the pathology. If it is Grade I, Dr.NeuroOncologist gave the tumor a 2% chance of growing back. If it is a Grade II, Dr.NeuroOncologist gave the tumor a 5% chance of growing back. (I don't have much confidence in statistics, because even with Vince's genetic disease, his chance of a brain tumor to start with was only less than 1%.)
Vince will get a follow-up MRI in three months, another one six months after that and then yearly from then on. They will just be following him and monitoring him to make sure he is OK.
Dr.NeuroOncologist then gave Vince a neurological examination which Vince passed with flying colors. He also checked Vince's incision and asked us some questions regarding his demeanor, appetite and such.
Later that day we saw the NeurosurgeryPhysicianAssistantLady. That was a waste of time, really. She looked briefly at his incision. She asked us the same questions about Vince's appetite and such. She did not do any neurological testing. Her appointment was 4 hours after the first. We had to actually go back to the hospital for it. It was a waste of time, really.
Both the NeurosurgeryPhysicianAssistantLady and Dr.NeuroOncologist agree that Vince is doing fantastic. I agree, too, and I know it is all of your prayers.
I made a follow-up appointment with Dr.Neurosurgeon for April. If Vince continues to do well, he'll be released from Dr.Neurosurgeon's care then.
Amazing.
Neurosurgery is truly a miracle.
On Thursday, we went back up to Children's Hospital to see the neuro-oncologist (and also went to a follow-up appointment with the neurosurgeon's PA). We had originally seen Dr.NeuroOncologist when we had first received Vince's diagnosis. Thursday, Dr.NeuroOncologist had printed out scans from the MRI from before and after the surgery. Vince's surgery was a success! Dr.Neurosurgeon had gotten all of the tumor out! The area that the tumor used to be in was now filled with fluid, Dr.NeuroOncologist said, and showed us on the scan.
Dr.NeuroOncologist was unsure of the tumor was Grade I or Grade II. He'll know in another ten days when they are finished with the pathology. If it is Grade I, Dr.NeuroOncologist gave the tumor a 2% chance of growing back. If it is a Grade II, Dr.NeuroOncologist gave the tumor a 5% chance of growing back. (I don't have much confidence in statistics, because even with Vince's genetic disease, his chance of a brain tumor to start with was only less than 1%.)
Vince will get a follow-up MRI in three months, another one six months after that and then yearly from then on. They will just be following him and monitoring him to make sure he is OK.
Dr.NeuroOncologist then gave Vince a neurological examination which Vince passed with flying colors. He also checked Vince's incision and asked us some questions regarding his demeanor, appetite and such.
Later that day we saw the NeurosurgeryPhysicianAssistantLady. That was a waste of time, really. She looked briefly at his incision. She asked us the same questions about Vince's appetite and such. She did not do any neurological testing. Her appointment was 4 hours after the first. We had to actually go back to the hospital for it. It was a waste of time, really.
Both the NeurosurgeryPhysicianAssistantLady and Dr.NeuroOncologist agree that Vince is doing fantastic. I agree, too, and I know it is all of your prayers.
I made a follow-up appointment with Dr.Neurosurgeon for April. If Vince continues to do well, he'll be released from Dr.Neurosurgeon's care then.
Amazing.
Neurosurgery is truly a miracle.
Monday, March 10, 2014
VINCE IS HOME!!!!!
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