Clippin Along
We had a great reunion weekend together and we’re happy to report that Chase’s treatments are clippin along – he’s now up to 120 ml per dose of ANP X 6 per day, with no side effects (other than the continued urge to go to the bathroom – now up to 5 times per night). This is a minor issue and thus far hasn’t really bothered Chase – it’s quite ironic as long as it took Carol to get him to not wet the bed at night and now, we’d probably prefer him to do just that while getting a good nights sleep instead of waking us up. Oh well, a minor sacrifice, particularly if / when we get the desired effect of the ANP treatments.
The only issue so far that was identified in his routine blood tests was somewhat low potassium – fairly common when you’re running that much fluid through your system, it’s hard to keep it in balance. Until now, we’ve managed to maintain the balance through high potassium foods (potatoes, tomatoes, yogurt, etc.). Today, for the first time Chase’s potassium level fell below the threshold and they recommended a concentrated supplement – we’re trying to minimize these so there’s that many fewer things to convince him to take (and for us to pay him for) – we just don’t want to fluster him as the financial incentive is becoming less enticing (we recently resorted to Chuckee Cheeze tokens and that seemed to perk his interest again).
We’re also having to get more creative in finding ways to increase his intake of fruits and veggies even more (targeting ~ 10 servings per day, if we can). This means using a juicer (lots of concoctions that we’re experimenting with and adding things like flax oil and liquid potassium concentrate), a blender for smoothies which we’re passing off as treats and “special deserts”, fresh soups that we can use to disguise an assortment of veggies he doesn’t know about, etc. It really means having to plan out the day because if we’re out and about without enough snacks that we want him to eat, we could have a “set-back”. Today we discovered a smoothie chain (“Thirsties”) that uses only soy based products instead of dairy and fresh fruits – Chase loved what we passed off as vanilla ice cream with some toppings. We wish they had places like this back home – they’re only in Texas and one in Tennessee. We’re going to have to learn how to make things that he likes as much as this – it takes a lot of pressure off having to coerce him all the time.
The most important thing is that Chase continues to be in great spirits and is cooperating fully. The doctors at the Burzynski are quite impressed with his progress and quite optimistic about the results that we’ll be able to achieve. We’re also making great progress with the homeopathic remedy that we received from India (Ruta 6 and Cal Phos). Chase has been following it as prescribed for nearly a week and he finally gets the fact that it’s not that hard to let things dissolve under your tongue if you just put them there and forget about em for a few minutes. This simple remedy has reportedly achieved 8 out of 9 complete remissions at the clinic in Calcutta that we corresponded with. We also spoke directly with Deepak Chopra (world renowned leader in holistic medicine) on Friday evening and he was quite supportive of our approach – he really wouldn’t change anything with what we’re doing, other than to recommend a couple of specific approaches to meditation / prayer, which we’re anxious to use.
All in all, a pretty good weekend and we’re plugging along on the trail to Chase’s recovery, although we still have a lot to learn and incorporate (particularly with the nutrition side of the therapy which can be overwhelming at times). We had a nice evening out on Saturday visiting a former neighbor from Dearborn Heights, MI (Theresa St. Pierre Dial) – thanks for the hospitality and good conversation as well as the organic cooking for Chase! It was a great “escape” from the routine we’re settling into, but at least we see the light at the end of the tunnel – the doctors felt that we should be able to get Chase home by early next week (targeting Mon) if he continues to do this well. The multitude of prayer is definitely working – not only is Chase feeling well, but we’re as optimistic as ever about his prospects for a complete and rapid recovery!
With lots of love and gratitude,
John & Carol
Chase & Barbara Ann
The only issue so far that was identified in his routine blood tests was somewhat low potassium – fairly common when you’re running that much fluid through your system, it’s hard to keep it in balance. Until now, we’ve managed to maintain the balance through high potassium foods (potatoes, tomatoes, yogurt, etc.). Today, for the first time Chase’s potassium level fell below the threshold and they recommended a concentrated supplement – we’re trying to minimize these so there’s that many fewer things to convince him to take (and for us to pay him for) – we just don’t want to fluster him as the financial incentive is becoming less enticing (we recently resorted to Chuckee Cheeze tokens and that seemed to perk his interest again).
We’re also having to get more creative in finding ways to increase his intake of fruits and veggies even more (targeting ~ 10 servings per day, if we can). This means using a juicer (lots of concoctions that we’re experimenting with and adding things like flax oil and liquid potassium concentrate), a blender for smoothies which we’re passing off as treats and “special deserts”, fresh soups that we can use to disguise an assortment of veggies he doesn’t know about, etc. It really means having to plan out the day because if we’re out and about without enough snacks that we want him to eat, we could have a “set-back”. Today we discovered a smoothie chain (“Thirsties”) that uses only soy based products instead of dairy and fresh fruits – Chase loved what we passed off as vanilla ice cream with some toppings. We wish they had places like this back home – they’re only in Texas and one in Tennessee. We’re going to have to learn how to make things that he likes as much as this – it takes a lot of pressure off having to coerce him all the time.
The most important thing is that Chase continues to be in great spirits and is cooperating fully. The doctors at the Burzynski are quite impressed with his progress and quite optimistic about the results that we’ll be able to achieve. We’re also making great progress with the homeopathic remedy that we received from India (Ruta 6 and Cal Phos). Chase has been following it as prescribed for nearly a week and he finally gets the fact that it’s not that hard to let things dissolve under your tongue if you just put them there and forget about em for a few minutes. This simple remedy has reportedly achieved 8 out of 9 complete remissions at the clinic in Calcutta that we corresponded with. We also spoke directly with Deepak Chopra (world renowned leader in holistic medicine) on Friday evening and he was quite supportive of our approach – he really wouldn’t change anything with what we’re doing, other than to recommend a couple of specific approaches to meditation / prayer, which we’re anxious to use.
All in all, a pretty good weekend and we’re plugging along on the trail to Chase’s recovery, although we still have a lot to learn and incorporate (particularly with the nutrition side of the therapy which can be overwhelming at times). We had a nice evening out on Saturday visiting a former neighbor from Dearborn Heights, MI (Theresa St. Pierre Dial) – thanks for the hospitality and good conversation as well as the organic cooking for Chase! It was a great “escape” from the routine we’re settling into, but at least we see the light at the end of the tunnel – the doctors felt that we should be able to get Chase home by early next week (targeting Mon) if he continues to do this well. The multitude of prayer is definitely working – not only is Chase feeling well, but we’re as optimistic as ever about his prospects for a complete and rapid recovery!
With lots of love and gratitude,
John & Carol
Chase & Barbara Ann
posted by John & Carol Sammut at 10:14 PM
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