Chase's Treatment is Moving Along Smoothly!
Chase started out today right where he left off – the first night with the bag, pump and anti-neoplastins by his side went fine. He seems to be adjusting pretty well to the fact that this is connected to him. He got up and carried it to the bathroom first thing this morning with no hang-ups. We went back to the clinic where they continued the training on how to change the IV bag, re-program the pump, etc. and Carol is doing a great job coming up to speed on the whole system. I’m certain that it won’t be a problem to administer this from home by the time she spends another couple of weeks going over the procedure every day. They also drew blood from the port, which was no problem for Chase (a lot easier than having to use a needle in his arm) – didn’t even cost us anything, although Chase was still trying to negotiate with Carol (despite the fact that there was really nothing to it).
We met with the Nutritionist from the Burzynski Clinic and went over her general recommendations. There doesn’t seem to be a lot of adjustments up front that will be required to Chase’s diet, since his bloodwork looked good and in general he tends to eat fairly balanced meals. We’re just going to have to monitor intake of anything “processed” (try to consume as many organic products as possible) and as they continue to ramp-up the dose of his meds, we’ll have to help him choose the right kinds of things to munch on because he’s going to be compelled to eat and drink a lot throughout the day (based upon the steroids as well as the sodium content in the antineoplastins). We’ll be giving him regular access to lots of fruits and vegetables throughout the day to snack on, which shouldn’t be too difficult because he’s usually happy to eat them.
We also got a return call from the Nutritional Specialist (Jeanne Wallace) who completed her report and is expressing it to us so we can have a consultation and begin the ongoing monitoring process, with her reviewing Chase’s bloodwork a couple times a week. She agreed with our decision to combine the anti-neoplastins with the homeopathic remedy as well as ongoing nutrition monitoring to boost Chase’s immune system. Overall, she’s very comfortable with the plan and doesn’t see any conflicting issues with the treatments. Chase will begin taking the homeopathic remedy, RUTA 6 and Cal Phos, this weekend after a couple more days of the antineoplastins.
We had our initial consultation today from the Chopra Institute (Deepak’s colleague, Dr. Simon), who was very knowledgeable on this type of condition (as well as the treatment options) and was also very supportive of the approach we’re taking by starting with the Burzynski Institute (another affirmation of this direction we’re quickly taking). Although he wasn’t familiar with the RUTA 6 remedy, he agreed with the idea of combining the approaches and added the suggestion of considering some herbal treatments as well, designed to help boost the immune system. The key to this overall strategy will be to conduct regular, close monitoring of the progress (i.e. consistent MRIs and probably PET scans) to compare to our baseline levels. Rather than work with Chase on meditation or “programming skills”, he recommended keeping things light-hearted, playful, and “normal” as much as possible, including adding some new bedtime stories that have a “sweet” way of dealing with his challenges.
We also got confirmation from MD Anderson that they received the biopsy sample to be able to conduct a pathology report. They will provide us with a complete assessment tomorrow along with their recommendations on a treatment plan. In addition, we got a return call from Cedars Sinai to provide info on some advanced trials that they are just beginning related to immunotherapy – they develop vaccines to treat the specific type of tumor (as opposed to chemo or other intoxicants designed to kill just about everything). It sounds interesting as an alternative; however, we’re continuing to pray and believe that the anti-neoplastins are doing the job, which we hope to confirm soon enough.
After the appointments today, Chase had fun playing at Chucke Cheeze’s and then had one of his favorite home-cooked meals, spaghetti, with lots of organic veggies in the sauce. He’s continuing to eat well and, as they predicted, the meds are causing him to be thirsty more throughout the day. All in all, it’s going as well as we could hope…
Thanks again for all the thoughts and prayers! They’re really working. This miracle is unfolding before our eyes – Chase is such a good sport with this, it’s been a real uplifting experience for our whole family. Other than carrying around the IV bag and having a hose connected to him, it’s hard to notice any impediments (despite the ongoing physical challenge to recover from the brain surgery). Everything is working out perfectly and your support means the world to us!!
With lots of love and gratitude,John & Carol Sammut
Chase & Barbara Ann
We met with the Nutritionist from the Burzynski Clinic and went over her general recommendations. There doesn’t seem to be a lot of adjustments up front that will be required to Chase’s diet, since his bloodwork looked good and in general he tends to eat fairly balanced meals. We’re just going to have to monitor intake of anything “processed” (try to consume as many organic products as possible) and as they continue to ramp-up the dose of his meds, we’ll have to help him choose the right kinds of things to munch on because he’s going to be compelled to eat and drink a lot throughout the day (based upon the steroids as well as the sodium content in the antineoplastins). We’ll be giving him regular access to lots of fruits and vegetables throughout the day to snack on, which shouldn’t be too difficult because he’s usually happy to eat them.
We also got a return call from the Nutritional Specialist (Jeanne Wallace) who completed her report and is expressing it to us so we can have a consultation and begin the ongoing monitoring process, with her reviewing Chase’s bloodwork a couple times a week. She agreed with our decision to combine the anti-neoplastins with the homeopathic remedy as well as ongoing nutrition monitoring to boost Chase’s immune system. Overall, she’s very comfortable with the plan and doesn’t see any conflicting issues with the treatments. Chase will begin taking the homeopathic remedy, RUTA 6 and Cal Phos, this weekend after a couple more days of the antineoplastins.
We had our initial consultation today from the Chopra Institute (Deepak’s colleague, Dr. Simon), who was very knowledgeable on this type of condition (as well as the treatment options) and was also very supportive of the approach we’re taking by starting with the Burzynski Institute (another affirmation of this direction we’re quickly taking). Although he wasn’t familiar with the RUTA 6 remedy, he agreed with the idea of combining the approaches and added the suggestion of considering some herbal treatments as well, designed to help boost the immune system. The key to this overall strategy will be to conduct regular, close monitoring of the progress (i.e. consistent MRIs and probably PET scans) to compare to our baseline levels. Rather than work with Chase on meditation or “programming skills”, he recommended keeping things light-hearted, playful, and “normal” as much as possible, including adding some new bedtime stories that have a “sweet” way of dealing with his challenges.
We also got confirmation from MD Anderson that they received the biopsy sample to be able to conduct a pathology report. They will provide us with a complete assessment tomorrow along with their recommendations on a treatment plan. In addition, we got a return call from Cedars Sinai to provide info on some advanced trials that they are just beginning related to immunotherapy – they develop vaccines to treat the specific type of tumor (as opposed to chemo or other intoxicants designed to kill just about everything). It sounds interesting as an alternative; however, we’re continuing to pray and believe that the anti-neoplastins are doing the job, which we hope to confirm soon enough.
After the appointments today, Chase had fun playing at Chucke Cheeze’s and then had one of his favorite home-cooked meals, spaghetti, with lots of organic veggies in the sauce. He’s continuing to eat well and, as they predicted, the meds are causing him to be thirsty more throughout the day. All in all, it’s going as well as we could hope…
Thanks again for all the thoughts and prayers! They’re really working. This miracle is unfolding before our eyes – Chase is such a good sport with this, it’s been a real uplifting experience for our whole family. Other than carrying around the IV bag and having a hose connected to him, it’s hard to notice any impediments (despite the ongoing physical challenge to recover from the brain surgery). Everything is working out perfectly and your support means the world to us!!
With lots of love and gratitude,John & Carol Sammut
Chase & Barbara Ann
posted by John & Carol Sammut at 8:28 PM
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