Another Step Forward
Our initial consultation with the Burzynski Clinic today went as well as we had hoped. In reviewing Chase’s case, they indicated that he is a very strong candidate for this type of treatment – the types of patients that have responded the most quickly and effectively have had this specific type of condition (brainstem gliomas of some type, and the more aggressive versions – such as Astrocytoma – tend to react well to the antineoplastins). In addition, given the fact that Chase hasn’t lost any weight and seems to have a fairly strong immune system, it should enable them to see his system’s reaction to the treatment fairly quickly. Occasionally, they’ve seen patients like this overcome the “active” part of the tumor within a couple of months and then several more months for the remaining part of the tumor to react and shrink. One key piece of data that we haven’t gotten to date, is the portions of the tumor that are actively / rapidly multiplying – apparently, this will become more evident with a baseline PET scan. We’ll have to wait until we get back home to have one conducted and then begin to monitor the level of activity in these “hot spots” over time.
Once we start the treatments (hopefully tomorrow) we will slowly ramp-up the concentration of the antineoplastins being administered over the course of 2-3 weeks so Chase’s system can adjust, targeting < 25 days to reach max dosage, if we don’t have to interrupt the pace due to adverse reactions. The treatment will be conducted 24 / 7 through a pump that will be carried in a small bag or backpack, which we will be trained on tomorrow. Carol explained to Chase that he’s going to be receiving this type of medicine every day for the next year or so, to which he really seemed puzzled – he said, “Mommy, how am I going to be able to sleep with this backpack”….she explained, “We’ll just set it next to your bed”… he still seemed puzzled, not understanding what other changes he’s about to embark upon but he’s sure been quite adaptive so far and we’re hopeful he’ll just take this in stride as well.
They conducted another full examination of Chase, which seemed to indicate once again that the only symptom he’s exhibiting from the tumor is the immobility of his left eye. This is very encouraging because it seems that the tumor is not progressing very rapidly and they felt confident that he would recover from the eye nerve palsy fairly quickly once the treatment starts becoming effective. We can’t wait for that day – this will likely be the first indication that he’s successfully beating the “bad guys”. The eye exam indicated that he still has pretty good vision, but his brain is compensating for the double vision by shutting off the left eye or favoring the right eye – in reading the eye chart, he showed much stronger vision in the right eye. Although this still doesn’t concern or surprise them (fairly typical for this condition), it certainly isn’t a comfortable feeling for his parents to observe or acknowledge. Nevertheless, we’re keeping the faith and seeing / visualizing him fully healed with perfect vision, etc. and “divine order” coming to pass.
The only “downside” of the initial consultation for Chase was the fact that they had to draw his blood once again, which he was obviously not happy about. But after negotiating for a couple dollars and shedding a few tears, he was on his way out of there and asking about getting some more burritos to eat for dinner (another good sign with his strong appetite again). We didn’t have the heart to explain to him that this is practically going to be a daily occurrence once his treatments start. We are praying that things go smoothly tomorrow with the initial treatment so that we can start making some real progress on his road to full recovery. We have an appointment with MD Anderson in the morning, and unless they come up with some major dissuading information, we’ll keep the “traditional approach” in our back pocket as we head into the Burzynski clinic to get started with the first treatment in the afternoon.
Chase hit the sack early tonight and we’re hoping he gets a lot of rest so he’ll have the energy to get this recovery train out of the station tomorrow afternoon. Once again your prayers and all of the messages of encouragement are making a huge difference – we’re seeing this miracle recovery unfold right before our eyes.
Thanks for keeping the faith!!
With lots of love and gratitude,
John & Carol
Chase & Barbara Ann
Once we start the treatments (hopefully tomorrow) we will slowly ramp-up the concentration of the antineoplastins being administered over the course of 2-3 weeks so Chase’s system can adjust, targeting < 25 days to reach max dosage, if we don’t have to interrupt the pace due to adverse reactions. The treatment will be conducted 24 / 7 through a pump that will be carried in a small bag or backpack, which we will be trained on tomorrow. Carol explained to Chase that he’s going to be receiving this type of medicine every day for the next year or so, to which he really seemed puzzled – he said, “Mommy, how am I going to be able to sleep with this backpack”….she explained, “We’ll just set it next to your bed”… he still seemed puzzled, not understanding what other changes he’s about to embark upon but he’s sure been quite adaptive so far and we’re hopeful he’ll just take this in stride as well.
They conducted another full examination of Chase, which seemed to indicate once again that the only symptom he’s exhibiting from the tumor is the immobility of his left eye. This is very encouraging because it seems that the tumor is not progressing very rapidly and they felt confident that he would recover from the eye nerve palsy fairly quickly once the treatment starts becoming effective. We can’t wait for that day – this will likely be the first indication that he’s successfully beating the “bad guys”. The eye exam indicated that he still has pretty good vision, but his brain is compensating for the double vision by shutting off the left eye or favoring the right eye – in reading the eye chart, he showed much stronger vision in the right eye. Although this still doesn’t concern or surprise them (fairly typical for this condition), it certainly isn’t a comfortable feeling for his parents to observe or acknowledge. Nevertheless, we’re keeping the faith and seeing / visualizing him fully healed with perfect vision, etc. and “divine order” coming to pass.
The only “downside” of the initial consultation for Chase was the fact that they had to draw his blood once again, which he was obviously not happy about. But after negotiating for a couple dollars and shedding a few tears, he was on his way out of there and asking about getting some more burritos to eat for dinner (another good sign with his strong appetite again). We didn’t have the heart to explain to him that this is practically going to be a daily occurrence once his treatments start. We are praying that things go smoothly tomorrow with the initial treatment so that we can start making some real progress on his road to full recovery. We have an appointment with MD Anderson in the morning, and unless they come up with some major dissuading information, we’ll keep the “traditional approach” in our back pocket as we head into the Burzynski clinic to get started with the first treatment in the afternoon.
Chase hit the sack early tonight and we’re hoping he gets a lot of rest so he’ll have the energy to get this recovery train out of the station tomorrow afternoon. Once again your prayers and all of the messages of encouragement are making a huge difference – we’re seeing this miracle recovery unfold right before our eyes.
Thanks for keeping the faith!!
With lots of love and gratitude,
John & Carol
Chase & Barbara Ann
posted by John & Carol Sammut at 11:52 PM
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