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

Happy Thanksgiving!

Chase is doing great overall during this holiday week and enjoying the time at home with Carol and Barbara. He’s excited to have his cousins (the Balandas) spend the next few days with us, particularly Joseph (7). Since his aunties can change his port access needle, Chase is willing to go through that routine daily in order to be able to swim with his cousins. The fact that he’s really gotten over any apprehension of the needles makes things much easier and less stressful. We’ll be using our family pass for the Warren Community Pool all weekend.

Chase and Barbara are also really excited about the first snowfall of winter today, although they’re not really ready for the cold temperatures. We’ll see how long they tolerate it tomorrow morning for Thanksgiving Parade – last year they only lasted about an hour and I doubt they’ll make it that long this year, since it’s even colder. We’ll probably be leaving before Santa makes his grand appearance, but we’ll have a chance to see his float on the way out. Hopefully, the dads will be able to entertain the kids long enough away from home for the moms to get Thanksgiving dinner ready without going stir crazy with all the distractions.

We feel very blessed this Thanksgiving with a lot to be grateful for – Chase has done as well or better than expected from the onset and we’re absolutely certain that he’s on track to be restored to complete health. We’re looking forward to a wonderful holiday season. Thanks so much for all the support and prayers – they really make a difference as we can feel the uplifting energy and the power of the spirit! We hope everyone has a wonderful Thanksgiving and the start of a blessed holiday season.

With lots of love and gratitude,

John & Carol Sammut
Chase & Barbara Ann

Chase is Fighting Fatigue

Fortunately, Chase’s system seems to be stabilizing after having returned to an acceptable range for most of the vital indicators. Actually during the call from our doctor at the Burzynski clinic today, he was quite pleased with the progress and said, “keep giving him those iron supplements”?!? I just went along with it and said, “sure thing”. Of course, we haven’t given Chase any and the dietary changes along with the natural enhancers recommended by our Nutritionist seems to be working quite well.

The only concern lately has been occasional bouts with diarrhea, which has caused Chase to be fatigued more than usual. We’re watching this closely, particularly for any potential impact on his systems and the key aspects of his bloodwork. Actually, we believe this could be a good indication of Chase’s system purging or detoxifying itself. We were told by another successful Burzynski patient that this was a common symptom during the period when they experienced significant breakdown of the tumor. We’ve also been running the Rife machine on the detox cycles pretty frequently to help Chase’s system to break it down and purge.

Just in case we ever need transfusions, we made provisions to have donor blood processed and ready to go – thanks to Carol’s cousin Amy Weinkauf, who was a perfect match. With her participation in the designated donor program, Chase will be covered in that unfortunate event, which is quite comforting.

Chase and Barbara have the week off from school and this is keeping Carol extra busy with play dates and other activities (quite exhausting, but rewarding work). We remain optimistic that everything is working out as well as we could hope – we recently confirmed that Chase’s next MRI will be on December 15th and that is our next big milestone to confirm the efficacy of his mulit-faceted treatment plan.

Thanks again for all the prayerful support!

Lots of love and gratitude,

John & Carol Sammut
Chase & Barbara Ann

Chase's Hemoglobin is Back Up!

Chase is doing great – we just confirmed that his hemoglobin is back up to 9 (although we’d like to see it > 10, at least it’s moving in the right direction). We’ve managed to get this improvement without supplements, just using natural products and altering his diet. This is a major relief, since the last thing we wanted to do is increase the number of pills he has to take. In addition, we’ve come across some research that indicates that a high level of iron can actually increase the risk of cancer via its production of free radicals. Some scientists actually propose that iron deficiency anemia in cancer is a “purposeful adaptation” (i.e. a sign of the body’s innate wisdom) designed to withhold from neoplastic cells the iron that would promote cancerous growth. Despite this research, many doctors still routinely prescribe iron supplements for anemia in cancer patients?!? That was of course the recommendation we received in this case and chose to disregard.

Fortunately, we were able to head this off for now and Chase seems to be doing quite well. We believe the trampoline may have also been a contributor to his improvement (great idea Carol) and he certainly likes that kind of exercise. His appetite is also continuing to improve along with his level of energy. Chase is going along with the regular rife treatments (every other day) and we believe this is also helping his system detoxify, as well as possibly attack the tumor.

A book that we recently came across entitled, Remarkable Recoveries, seems to describe our situation and the course that Chase is taking quite well. Story after story of “spontaneous remission” followed a combination of deep faith, resolve, unwillingness to accept anything less, nutrition, and natural / alternative treatments that ultimately turned on the body’s innate ability to cure itself. While these cases are still quite rare and considered the exception versus the rule, they had a lot of the same common denominators and reading about them has been a real booster. We’re more convinced than ever that Chase is heading in the right direction and will eventually be another story to add to the growing list referenced in this book. Hopefully this will someday provide more clues to enable the holistic type of approach to become more commonplace.

It’s been an interesting ride so far and after passing the 90 day point, we’re well ahead of where the traditional healthcare providers predicted Chase would be – there’s absolutely no progression of symptoms and he seems to be improving all the time. We believe it will just be a matter of time before the MRI results substantiate this.

Lots of love and gratitude,

John & Carol Sammut
Chase and Barbara Ann

Chase's Potassium is Back in the Normal Rangeq

We’re happy to report that Chase’s potassium returned to the normal range today (3.8) without very many supplements (1-2 per day) and backing off further. We’re continuing to find easier ways to get the potassium into his system (including "nu salt" in most of his drinks). His appetite is also continuing to improve (although still not nearly what it was before the bouts with nausea). It’s been a struggle lately to get Chase to eat much of the “creative recipes" that are designed to get all the right vitamins and minerals into his system while minimizing the supplements (which is probably why we’ve had the low trending on some of his key labs).

Carol did an outstanding job during the past week balancing the situation – keeping Chase eating the right stuff (when his system was able to hold it down) and then getting him to take the supplements to boost him up. This is in addition to trying to manage his states and keep his spirits up – a particularly challenging situation when he’s sick, crabby and not wanting to do much. It was a real roller-coaster of a week, to say the least, but it ended on a high note and his labs are starting to reflect the results of the hard work.

Unfortunately, we don’t have the hemoglobin results yet because the vile that was drawn got clotted and it will need to be re-drawn tomorrow. This was the first day of our new home-care nurse (the previous one took a new job) and hopefully this isn’t a bad omen. It took a while for Chase to warm up to the last one and we still never got to the point where we felt comfortable with her handling the port access changes, so we continue to rely upon Aunties Cathy and Corrine for needle changes on the weekends. We’re hoping and praying things stabilize with this new nurse so we can have more flexibility going forward. Another option might be for Carol to gain proficiency at the needle change process (which I’m confident she could do) – I’m certainly not up for the job (I usually leave the scene as soon as the needle comes out).

We’ll see how it goes, but for now at least the results we’ve obtained from today’s analysis were pretty good and hopefully the balance of the results tomorrow will be as well. Thanks for the continued prayers and support! We're over another speedbump on our way to Chase's full recovery.

Lots of love and gratitude

John & Carol Sammmut
Chase & Barbara Ann

Chase is Bouncing Back

I just returned from Romania / Germany and pleased to see that Chase’s systems seem to be regaining strength – he’s gone two + days without vomiting and he is starting to regain his appetite (although it’s still a bit of a struggle to get him to eat). He’s had more venison lately (which we’re hoping will contribute to an increase in his hemoglobin), while taking the protocol recommended by his Nutritionist, as well as an occasional shot of wheatgrass (fortunately, he seems to like this when mixed with a fruit smoothie) and whey protein mixed with soy milk. We’re very optimistic that everything is getting back on track.

We did have another setback though with Chase’s most recent bloodtest – his potassium dropped to an all-time low of 2.8 (targeting > 4). In the past when this occurred, the clinic immediately prescribed potassium supplements, which seemed to work well and he responded quickly; however, given the number of things he’s already taking and the fact that his system is somewhat rebelling to taking pills (this seems to be when he’s most susceptible to vomiting) we decided to eliminate the supplements and focus on altering his diet with ore foods high in potassium, as well as “new salt” (potassium salt substitute). This worked for about a week and his levels were higher than ever (without the supplements), but all of a sudden the results cam back yesterday and his doctor at the Burzynski Clinic called to find out “what the heck is going on over there”… Carol explained the natural approach we were taking, which seemed to be working fine and enabled us to eliminate 3 of the many pills Chase has to take every day; however, he urged her to get going on the supplements again right away.

So, the latest approach is somewhere in between – use 1 or 2 supplements, but mix the contents of the capsules into a spoon of yogurt so that they’re easier to take. This seems to be working and hopefully will be reflected in the results of Chase’s next bloodtest (along with the increased hemoglobin). The ironic thing is that despite the low potassium and hemoglobin levels in the tests, Chase seems to be doing just fine. You wouldn’t guess there’s any issue with anemia – he’s got plenty of energy. In fact, we bout a trampoline so that Chase and Barbara can have fun while getting their daily exercise, which is a key element of his ongoing therapy. It seems to be working and is perhaps one of the reasons why his system is “bouncing back” so quickly…

As usual, Barbara is being a good sport and a very supporting sister during this process – she’s been continually trying to lift his spirits and get him up for going out to play. We were also pleased to receive very positive feedback on both of them during the parent-teachers conferences this week. Despite the circumstances, they both seem to be well-adjusted and getting along well with their classmates.

Thanks for all the prayers – we’ve collectively succeeded in getting Chase back to some degree of stability and the support for our whole family has been overwhelmingly lifting during this difficult process. We’re continuing to pray that the next bloodtest on Monday will confirm that everything is fin and Chase’s system is back on track.

Lots of love and gratitude,

John & Carol Sammut
Chase & Barbara Ann

Chase's System Seems to be Stabilizing Again

Well, Chase only vomited once yesterday (a big improvement from the 3 times on Monday) and he hasn’t at all thus far today. In addition to the anti-inflammatories, we’re giving him antacid medication and hoping to ease his stomach a bit. We believe the decadron could be causing his stomach to be more sensitive (another good reason to continue tapering it off – now at 1.5 mg per day and reducing at a rate of 0.5 per week).

Chase reportedly woke up today in better spirits and energy than he’s had in a few days, so hopefully he’ll make it through the rest of the day without vomiting and begin to regain his strength. You can imagine what a downer it’s been for him (and even more for us to witness). We did decide to back down on his dose of ANP for a while (down to 300 ml every 4 hours), which we will very slowly increase again once he stabilizes. We just felt that it’s not doing him any good if it drags down the rest of his immune-boosting systems.

Unfortunately, since he hasn’t done well in keeping down food, or the hemoglobin boosting protocol over the past few days, his hemoglobin is still at a very concerning level of 8.3 (targeting to get it back > 10, at least). For the moment he seems to be tolerating the things that were suggested to get it back up (whey protein, L glutamine and chlorella). Hopefully after a few days of normal nutrition and keeping these supplements down, he’ll have a much better result with the test again next Monday. If it goes much lower, we’re probably going to have to do blood transfusions, which we’d really rather avoid.

Thanks so much for the prayerful support. We’re visualizing and expecting Chase to regain his strength, stabilize again and increase his hemoglobin level quickly to get by another close call. With all your prayer chains, so far we’ve managed to keep him boosted high enough to stay above the fray at every concerning juncture….this is just another speed bump that we’ll be helping him to get over on his way to a full recovery….


Lots of love and gratitude,

John & Carol Sammut
Chase and Barbara Ann

A Small Step Back for Chase

Over the past few days, Chase has continued to have his “ups and downs”. Fortunately he was able to avoid hospitalization last week due to the infection concern and for the following couple of days, he did really well. Then over the weekend his nausea returned and he had a really bad day on Saturday (couldn’t hold anything down). He seemed to bounce back again yesterday – ate well, held it down and was in great spirits, so we were really hopeful that we had figured out how to balance the supplements with his ability to tolerate them. However, this morning the nausea continued once again and after vomiting at home before school, he never really got back to stability (they called to have us pick him up at school after one hour and he didn’t have an appetite the rest of the day, although vomited again after drinking a healthy smoothie and apple juice).

So, we’re continuing to work on approaches to soothing Chase’s system. We’re adding drops of ginger to many of his drinks, increasing the natural anti-inflammatory supplements (boswelia, bromeline, ginger and lycopodium) in hopes that they will help him get back to stability. This is really a difficult process to watch as it brings him down throughout the day and makes it a challenge for him to participate in functions as his typically happy self.

We’re praying that the latest suggestions of our Nutritionist and the Burzynski Clinic will work so that Chase can get back on track. If we don’t see progress in the next few days, we may resort to taking a step back with his doses of ANP to see if it makes it easier for his system to tolerate and then gradually increase again over time. This process is particularly challenging right now as we were planning to taper Chase further off the decadron (steroid); however, the anti-inflammation aspect of this might be what he’s needing. That’s typically the Clinic’s response, but we’re hoping / praying to find a better way. We’re also anxiously waiting for his bloodwork results to see if we managed to boost his hemoblobin naturally over the past week.

Timing isn’t good for such as set-back and period of concern since I’m heading to Europe on a business trip for the rest of the week and can’t be at Carol’s side to help with Chase. Nevertheless, I’ll be there in spirit, believing that he is in good hands with the Lord and legions of angels by his side. Thanks again for joining us in prayer on this journey for Chase.

Lots of love and gratitude,

John & Carol Sammut
Chase and Barbara Ann

Chase Dodged Another Close Call

Chase woke up today in great spirits, although he still had a low grade fever. The concern from his local doctors was that we would have to admit him into the hospital for three days of IV antibiotics while they conducted a blood culture and sensitivity test. We were hoping and praying to avoid this, if at all possible. Carol explained the ramifications to Chase of having to be in hospital if this condition didn’t change – he stayed home from school and they prayed together, while spending a lot of quality time. They also ran the rife machine on a sequence of programs designed to address infections and by the early afternoon his fever was completely gone. Chase is getting really used to the rife treatments and doesn’t have any problems using the machine.

Nevertheless, Carol took Chase back to his Oncologist for a blood draw, so they could run the tests, just in case. He seems fine now and for the moment, it looks like he successfully dodged another close call. We’ll get the results back soon, and hopefully it will confirm that everything is OK. He got a lot of rest this afternoon and is now back on the ANP treatments. If all goes well tomorrow, we should be back on track.

This was just another timely reminder of the magnitude of ongoing risk associated with his port. So far, so good – thanks for all the prayers! It’s making a huge difference. We’re really excited about the potential for more progress combining the ANP, rife and homeopathic treatments. Our focus continues to be on building up his hemoglobin over the next few days until he has another blood test on Monday. Chase’s appetite is back and he’s really liking the venison – this should provide a nice boost, along with the supplements he’s taking.

Lots of love and gratitude,

John & Carol Sammut
Chase and Barbara Ann

Chase Hit Another Speedbump - Hopefully Minor

Chase had a great time at Halloween, trick-or-treating as a red ninja, even though he knew that none of the candy would be his to eat. He got a lot of exercise along the way, running around the neighborhood with Barbara and some of the other kids from our block. After getting home, he was a good sport and told us he didn’t mind if we passed the candy out to the other kids while he hit the sack.

The problem started when we couldn’t get a blood draw from his port yesterday. We tried several times and eventually had to get a rush appointment at the Oncologist office today, where they managed to flush it clear with some solution. That seemed to do the trick and we were able to get his bloodwork submitted for his regular battery of tests. We had been noticing Chase’s hemoglobin trending low for the past couple of weeks (down to 9, with a target of 11-13), so we decided to have him start eating a bit more meat (organic, grass-fed of course) – actually, we were fortunate that our friend Gus recently got a deer, so Chase was able to have venison. We were hoping that this would start to boost his hemoglobin, but we were shocked to get the results back this evening (8.3). In addition, he was very lethargic and took a long nap this afternoon.

So we made sure to have Chase eat some more meat tonight and got some additional recommendations from his Nutritionist (whey protein, L glutamine, and chlorella). We’re anxious to give this a try so we can head off any further decline, which could lead to transfusions if his hemoglobin falls below 8. We got a bit of a further scare when Chase woke up this evening with a headache (worse than he’s had in the past) as well as a fever (102 degrees). So we decided to stop the ANP treatments for the night, give him some Tylenol and hope his fever is under control in the morning. The biggest concern, once again, is that he could have some bacteria causing an infection in his port that may have gotten dislodged when they cleared the port this afternoon.

In short, we’re hoping and praying that this is just a minor speedbump and not actually an infection in Chase’s port, which could really be problematic for the ANP treatments. We also need to see his hemoglobin levels increase significantly over the next few days to stave off any further problems. Thanks to all for keeping Chase in your prayers – they’ve worked so far to enable his condition to stabilize while we work on knocking this tumor out of his system. We’ll see what tomorrow brings and keep you posted…

Lots of love and gratitude,

John & Carol Sammut
Chase and Barbara Ann