Staying the Course

Chase has continued to make progress over the past week in his rebound from the recent issues that set him back over the previous few weeks. We discovered that the antibiotic we had given him to treat the staff infection in his lungs was too low of a dose and once we repeated it this week with a higher dose (under the guidance of our licensed Naturopath) Chase’s breathing is much improved again. He’s doing most of the breathing over the ventilator and we’re going to resume the weaning again process soon, after we give him a chance to recover a bit more strength.

We also consulted with other practitioners of alternative therapies for treating brain injuries about the input we received from our Neurosurgeon and Neurologist. We’re finding that the practitioners of neurofeedback and other new approaches that are being developed to successfully treat these patients are adamant about the fact that conventional medicine is only scratching the surface when it comes to knowledge about the functions of the brain and there’s NO WAY they could tell us anything definitively based upon their conventional studies, including EEGs. For example, one of the developers of a new neurofeedback technology described a phenomenon of the brain suppressing the amplitude of EEG waves in order to protect itself from the risk of seizures – ironically, Chase had a major seizure last September during his hospitalization. According to this practitioner, this is a very common effect that he’s seen in patients and he’s been reporting this to Neurologists for the past few years, although they don’t seem to get it (or aren’t paying attention to the ramifications). He is thus very cautious about using this kind of data to make any decisions with long-term ramifications (i.e. there’s simply no way we’re going to give up based upon a conventional read of EEG).

We’re just being reminded once again about the fact that we have to remain convicted in our mission of supporting Chase in his recovery and expecting our miracle to continue unfolding. The fact that we’ve gotten over 18 months is already a testimony to that power of faith and prayer – we’re continuing to stay the course and we believe that all of Chase’s Prayer Warriors being rewarded for our patience and persistence. Chase is doing his part and we’re committed to doing our part with whatever it takes to support him on his journey. Based upon this, we’re not sure that it makes sense to do any more testing with conventional practitioners, since they only seem to want to use the results as ammunition to get us to give up the battle and it’s exhausting to continually fight the establishment – we know what we’re seeing (slow, steady improvements) and our faith tells us to keep going – we believe Chase is worth every bit of the effort we’re making and his victory will be an amazing testimony for many to follow. After all, as a 6 year old he has a long way to go (even if it's an uphill battle) and we have a strong feeling that he's going to make history (as he's conveyed through our intuitive).

Thanks for all the support and prayers! It’s inspiring us to continue on this journey. We’re all keeping the faith together and bearing witness to Our Lord’s infinite mercy.

God Bless!!

John & Carol Sammut
Chase & Barbara Ann

Definitive Clarification is Coming Soon

Over this past week, Chase seems to be getting back to the stability he had prior to the previous couple of weeks. During that time, he got over his bout with diarrhea, followed by a urinary tract infection and then a staff infection in his lungs. Fortunately, we managed to quickly diagnose and treat these symptoms so that he could get back on track. As usual, his body responded and overcame the obstacles once again. His blood test this week was the best in a couple of months, giving us a strong indication of his continued recovery.

We’re sure that the prayer service helped in boosting Chase again, as he started responding with movements and improved breathing on Sunday and has continued ever since. Thanks to all who joined us in person or in spirit. Chase’s therapists all got strong indications this week that he’s doing well once again.

We conducted an EEG at home last week, in order to try and gain some insight into the function of his cortex and higher brain. We know that Chase’s brainstem is showing signs of recovery (as evidenced by the breathing improvements); however, the cognitive functions remain in question. Unfortunately, when we got the results a couple of days ago we didn’t get much clarification (although it did show beta wave activity that was more than the previous study done in October). Nevertheless, the Neurologist isn’t certain if this was due to the electronic filtration that was used to sort out the artifact in the study.

We discussed these results again with the Burzynski Clinic and they weren’t too surprised with the relatively low brainwave activity. Dr. B felt that this was likely due to the constriction and pressure that the tumor has put on the brainstem, which doesn’t really provide any insight into what would happen once the dead tissue from the tumor is completely resorbed and the related pressure relieved.

We also consulted with the Neurosurgeon who put in Chase’s shunt and he’s still concerned that what transpired during the last hospital stay in October could’ve led to brain death (the MRI at that time indicated constricted bloodflow). Despite the clear indications of responsiveness that we saw after that point, he remains skeptical. The more we discussed this with him, the more clear it became that the best way to “cut to the Chase” would be to conduct another MRI. He feels that this would be able to provide definitive clarification relative to the condition of Chase’s cortex. IF he in fact experienced brain death several months ago, the MRI would show clear indications of the cortex breaking down (essentially dissolving into a liquid throughout the upper lobes). If not (which we believe is the case), then the MRI would show normal cortex tissue and would reinforce our approach of continuing to support Chase’s recovery.

We’re currently making plans to conduct another MRI as soon as practical and we’re really looking forward to getting this clarification. This should provide a lot of relief and comfort either way, enabling us to make the right decisions on which way to proceed with Chase’s ongoing care.

We’re now at the 18 month mark, which is certainly a lot farther than we were told to expect; however, we’re not stopping here. This is coming upon the most critical juncture to date and we need to remain strong in our faith. We truly appreciate all the prayers and support for Chase and our whole family. Chase’s Prayer Warriors have been invaluable to us all throughout this process.

God Bless!!

John & Carol Sammut
Chase & Barbara Ann