7th July 2010
Hi there,
We met with the oncologist on Tuesday and he has recommended Temador at 120mg - Jed was on this protocol in Feb 2009 but we stopped it due to low blood counts (platelets) therefore I will be nagging for platelet donors again soon. This is not an IV chemo but an oral. The side effects are less than the trail chemo and we will try this before going for the Avastin (which has very harsh side effects)
DHL have sent the pathology slides to the US for confirmation that the tumor is Pilomyxoid Astrocytoma - there are two doctors over there looking at Jed's protocol to ensure that we are on the right path with regards to treatment going forward.
Jed is doing amazing, his left side weakness is no longer evident AT ALL (thank you Lord) and he is running around like a normal little boy - the only time you would notice the surgery is if you saw him from the back. He is my miracle boy and I want to say thank you to each of you for the prayers over this difficult time.
We MRI on the 20th of July 2010 and then we will know what we are dealing with...... our prayers are that the surgeon got the whole tumor - cystic cells and all. He explained that he went very deep into normal brain and removed every part that looked like cancer, scare tissue and radiation damage.
Radiation is not an option in this country as we don't have proton (direct at the tumor) - Jed has had maximum dosage of conversational treatment. If there is growth we will take Jeddy out the country if need be but for now we just pray, breathe and hold onto the hope that the surgeon got it all out.....
With love and hugs
Bon
x x x x
We met with the oncologist on Tuesday and he has recommended Temador at 120mg - Jed was on this protocol in Feb 2009 but we stopped it due to low blood counts (platelets) therefore I will be nagging for platelet donors again soon. This is not an IV chemo but an oral. The side effects are less than the trail chemo and we will try this before going for the Avastin (which has very harsh side effects)
DHL have sent the pathology slides to the US for confirmation that the tumor is Pilomyxoid Astrocytoma - there are two doctors over there looking at Jed's protocol to ensure that we are on the right path with regards to treatment going forward.
Jed is doing amazing, his left side weakness is no longer evident AT ALL (thank you Lord) and he is running around like a normal little boy - the only time you would notice the surgery is if you saw him from the back. He is my miracle boy and I want to say thank you to each of you for the prayers over this difficult time.
We MRI on the 20th of July 2010 and then we will know what we are dealing with...... our prayers are that the surgeon got the whole tumor - cystic cells and all. He explained that he went very deep into normal brain and removed every part that looked like cancer, scare tissue and radiation damage.
Radiation is not an option in this country as we don't have proton (direct at the tumor) - Jed has had maximum dosage of conversational treatment. If there is growth we will take Jeddy out the country if need be but for now we just pray, breathe and hold onto the hope that the surgeon got it all out.....
With love and hugs
Bon
x x x x
