Chase
Chase cooperated really well for his MRI on Friday – this was a real concern because it had to be done without anesthesia, since the lead-time was a couple of months due to one of the MRI machines being down. We decided to do whatever we could to get earlier feedback, since we’ve been seeing significant neurological symptoms lately (paralysis, nausea, etc.). Normally, the hospital’s policy is that children under 10 years old aren’t allowed to do this kind of scan w/o anesthesia, since any movement would negate the results and this is a costly procedure; however, we were pretty confident that Chase could pull this off and, once again, he made us proud. He was extremely cooperative, even though their headphones were broken and the system was extremely loud for about 30 minutes of scanning.
We were fortunate to be able to meet with the Radiologist right away and get his impressions. Unfortunately, the tumor was somewhat larger, which is quite concerning and obviously the reason for the increased neurological symptoms; however, there was a very significant change in its characteristics. We had been told after the previous scans that there seemed to be some necrosis (accumulation of dead tissue) but this time it was extremely obvious – there were two quite large “blisters” or pockets of fluid inside the tumor. The Radiologist described these as pretty clearly necrosis, but wasn’t sure this would be good news, since he’s not familiar with the results to expect from anti-neoplastons and the other treatments that we’re doing.
We got the feedback from the Burzynski Clinic today, after they reviewed the CD of the MRI as well. Dr. Burzynski was gracious enough to give us a direct consultation to discuss his impressions. He seems to think this is very likely good news – indicating that the tumor is starting to break down and typically the next step would be that the liquid in the blisters would dry up and eventually collapse or shrink. However, there were some areas of enhancement in the scans around these blisters which could also be an indication of higher grade activity (i.e. malignancy). If this is the case, we would need to stop antineoplastons right away and quickly develop an alternative plan (such as radiation or immunotherapy targeting this cell type). Alternatively, this enhancement could just be confirmation of the blood supply being cut off to these areas of the tumor which would be great news.
The only way for us to distinguish this critical crossroad is to conduct another PET scan. Since we have a negative baseline, if there is any change in metabolic activity, it would be an indication of aggressive activity in the tumor. If we don’t see any activity again, then we’re pretty confident that Chase’s tumor is on the way to breaking down soon. In the meantime, his physical activity lately seems to be pointing in the right direction – he lifted his right arm yesterday for the first time in quite a while and he’s been able to continue to do this (whether just strong will or the nerves having less pressure). He also lifted his right leg a few times and is now starting to do pedaling exercises recommended by our physical therapist, who is also seeing signs of encouragement. This could also mean that the tumor is getting soft and alleviating some of the pressure.
We’re hoping to get another PET scan in the next few days which should really be a major fork in our road to Chase’s recovery. We’re continuing to visualize and pray for the best possible outcome and we truly appreciate everyone’s support at this critical juncture!
God Bless!
John & Carol Sammut
Chase & Barbara Ann
We were fortunate to be able to meet with the Radiologist right away and get his impressions. Unfortunately, the tumor was somewhat larger, which is quite concerning and obviously the reason for the increased neurological symptoms; however, there was a very significant change in its characteristics. We had been told after the previous scans that there seemed to be some necrosis (accumulation of dead tissue) but this time it was extremely obvious – there were two quite large “blisters” or pockets of fluid inside the tumor. The Radiologist described these as pretty clearly necrosis, but wasn’t sure this would be good news, since he’s not familiar with the results to expect from anti-neoplastons and the other treatments that we’re doing.
We got the feedback from the Burzynski Clinic today, after they reviewed the CD of the MRI as well. Dr. Burzynski was gracious enough to give us a direct consultation to discuss his impressions. He seems to think this is very likely good news – indicating that the tumor is starting to break down and typically the next step would be that the liquid in the blisters would dry up and eventually collapse or shrink. However, there were some areas of enhancement in the scans around these blisters which could also be an indication of higher grade activity (i.e. malignancy). If this is the case, we would need to stop antineoplastons right away and quickly develop an alternative plan (such as radiation or immunotherapy targeting this cell type). Alternatively, this enhancement could just be confirmation of the blood supply being cut off to these areas of the tumor which would be great news.
The only way for us to distinguish this critical crossroad is to conduct another PET scan. Since we have a negative baseline, if there is any change in metabolic activity, it would be an indication of aggressive activity in the tumor. If we don’t see any activity again, then we’re pretty confident that Chase’s tumor is on the way to breaking down soon. In the meantime, his physical activity lately seems to be pointing in the right direction – he lifted his right arm yesterday for the first time in quite a while and he’s been able to continue to do this (whether just strong will or the nerves having less pressure). He also lifted his right leg a few times and is now starting to do pedaling exercises recommended by our physical therapist, who is also seeing signs of encouragement. This could also mean that the tumor is getting soft and alleviating some of the pressure.
We’re hoping to get another PET scan in the next few days which should really be a major fork in our road to Chase’s recovery. We’re continuing to visualize and pray for the best possible outcome and we truly appreciate everyone’s support at this critical juncture!
God Bless!
John & Carol Sammut
Chase & Barbara Ann
posted by John & Carol Sammut at 2:07 PM
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