Chase is Getting Back on Track!
Chase had a wonderful Thanksgiving weekend with his cousins and our extended family. Overall, he had a lot of fun and got to do a lot of the things he was really looking forward to, including going to the parade (they actually lasted long enough to see Santa in the last float), jumping on the trampoline and swimming – although only once because he had a low grade fever most of the weekend. This was of course an ongoing concern, but given the positive outcome of the last run-in with this issue, we were much more calm and confident that he would be fine. It took a bit longer than the last time (nearly 3 days) but he never got above 100.5 so we just kept a close eye on him and restricted some of the activities.
Of even more concern was Chase’s bout with nausea, once again. After the last drop in his potassium, the Burzynski Clinic insisted that we put him back on the prescription supplements, which we reluctantly complied with (to our regret now). It turned out to be counter-productive since it exacerbated the nausea and certainly didn’t help raise his potassium level. After several days of ups and downs, we finally dropped the supplements for the “kinder / gentler” approach to his stomach – potassium rich foods and salt substitute. This seems to be working since his level was close to normal today and he hasn’t had any vomiting for the past two days. We think we’ve finally isolated the root cause, after a lengthy process of elimination – the prescription supplement along with one of the inflammation suppressors (Boswelia). Anyhow, the important thing is that we get Chase back on track to stability, not a moment too soon. He was really getting worn out and frustrated with the nausea, despite everyone’s effort to boost his spirits. We also believe this will be key to boosting his hemoglobin as well, which unfortunately is back down to 8.4 as a result of the several days of vomiting. We’re now pursuing several natural approaches to boosting this again and hope to see it closer to normal next week.
Despite all the ups and downs with this process, Carol continues to do an outstanding job keeping Chase active and playful. Now that his system is stabilizing over the past couple of days, Chase’s spirits have been lifted again and tonight he was back to singing diddlies (“it’s a small world after all”…). What a relief – this kind of light-heartedness is literally music to our ears and goes a long way to lift our spirits as well in this ongoing battle. We’re really excited and looking forward to his next MRI on December 15th to confirm that his treatment(s) are continuing to work. Thanks for all the prayers and support! You’re a huge part of this successful endeavor….
With lots of love and gratitude,
John & Carol Sammut
Chase & Barbara Ann
Of even more concern was Chase’s bout with nausea, once again. After the last drop in his potassium, the Burzynski Clinic insisted that we put him back on the prescription supplements, which we reluctantly complied with (to our regret now). It turned out to be counter-productive since it exacerbated the nausea and certainly didn’t help raise his potassium level. After several days of ups and downs, we finally dropped the supplements for the “kinder / gentler” approach to his stomach – potassium rich foods and salt substitute. This seems to be working since his level was close to normal today and he hasn’t had any vomiting for the past two days. We think we’ve finally isolated the root cause, after a lengthy process of elimination – the prescription supplement along with one of the inflammation suppressors (Boswelia). Anyhow, the important thing is that we get Chase back on track to stability, not a moment too soon. He was really getting worn out and frustrated with the nausea, despite everyone’s effort to boost his spirits. We also believe this will be key to boosting his hemoglobin as well, which unfortunately is back down to 8.4 as a result of the several days of vomiting. We’re now pursuing several natural approaches to boosting this again and hope to see it closer to normal next week.
Despite all the ups and downs with this process, Carol continues to do an outstanding job keeping Chase active and playful. Now that his system is stabilizing over the past couple of days, Chase’s spirits have been lifted again and tonight he was back to singing diddlies (“it’s a small world after all”…). What a relief – this kind of light-heartedness is literally music to our ears and goes a long way to lift our spirits as well in this ongoing battle. We’re really excited and looking forward to his next MRI on December 15th to confirm that his treatment(s) are continuing to work. Thanks for all the prayers and support! You’re a huge part of this successful endeavor….
With lots of love and gratitude,
John & Carol Sammut
Chase & Barbara Ann
posted by John & Carol Sammut at 6:24 PM
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