Chase's Fever is Gone Today

We are thrilled to report that Chase woke up in good spirits this morning with no fever. Although it was a very low grade fever yesterday afternoon (100.3), it was nevertheless very concerning. He was fine this morning and was able to participate in picture day with his kindergarten class. We’re anxious to get the proofs so we can post the update. Although he’s having some challenges with the school transition (mainly because he hasn’t had a chance to make friends yet), we’re trying to remind him that it’s so early and he hasn’t spent the time with his classmates to be able to make friends. We’re hoping to arrange some play dates in the next few days with some of his classmates so that he can develop relationships one-on-one and begin to feel more comfortable at school. We strongly believe that a healthy school setting is critical to Chase’s long-term success so we’re committed to working it out.

We are thrilled with all the support we’ve received from Cranbrook. The teachers, administrators and nurse have been extremely understanding and accommodating. We know that once he gets over the “hump” with the transition, this experience will be the best thing for him to keep his chin up and take on the battles ahead with his condition. Carol had a nice moral boosting conversation with him today and it seemed to make a difference (although he would always prefer to spend his time with mommy than at school, she’s helping him to understand why this is important). She’s also giving him lots of quality time in the afternoons and evenings. Barbara is also continuing to be very supportive of her brother and cutting him some extra slack (letting him pick the movie to watch or game to play, laughing at his offhanded humor, etc.).

Thanks so much for the prayers and support!! We’re continuing to take it one day at a time and today Chase is doing fine!

Love,John & Carol Sammut
Chase & Barbara Ann

Chase is Easing into School

Chase is continuing ease into kindergarten and appears to be well-adjusted for the moment. Tomorrow is picture day for his class and we’re hoping that Chase will be able to participate. He seemed to have a slight fever this afternoon, which his Pediatrician was concerned could indicate an infection of some type. We will have to monitor this very closely, because if it happens to be related to an infection of his catheter, this could be a very serious setback and preclude administering the ANP treatments for an extended period of time.

We also learned through a specialized test, referred to as “Natural Killer” (NK cell function test) that his immune system appears to be compromised. This test assesses the ability of his body to identify and purge itself of cancerous cells. We were advised by his nutritionist to conduct this test and, based upon the results, to broaden our supplement plan to include Vitamin C, Selenium and a complex type of mushroom extract (more pills for Chase, fortunately two of these come in liquid form).

We are praying that it is nothing serious and that Chase is ok to attend school again tomorrow and participate in his kindergarten picture day! We appreciate your ongoing support and prayers! Chase could certainly use them today as we lift him up in his challenge.

Love,John & Carol Sammut
Chase & Barbara Ann

Chase's First Day of School Went Well

Chase got to attend his kindergarten class for the first time today – just for an hour this morning to get acquainted with the class and the program. Everything went well, but he was ready to go at the end of the hour; hopefully, after a couple more days like this, he’ll want to stay longer and the transition will be easy for everyone to manage. He didn’t seem too bothered by wearing the backpack, although he certainly got a lot of puzzled faces from the other kindergartners. We’re not sure how he explained it, but they seem to be accepting (the teachers must’ve done a good job helping his classmates prepare). We were also requested to write a letter to the parents explaining the issue and conveying how we would like it to be referred to in discussions – most likely as a “condition” of his eye that is being treated through this medicine, just to keep it simple for the kids.

We received some terrible news last night about another patient of the Burzynski Clinic (a 6 yr old boy in the Chicago area) who was diagnosed in May and just passed away suddenly a couple of days ago. We were told by another parent whose been coordinating the Burzynski yahoo patient group and has been very helpful with ongoing insight and advice. Although it seems that his situation was most likely related to other complications (perhaps from the steroids that we’ve been aggressively managing), it was still very concerning and “nerve racking”, to say the least. It really hit home and “lit a fire” under my conviction – we’re so blessed compared to most parents in this situation that stories like this continually remind us of the desperate need out there for a foundation to make a real difference for these patients to navigate this traitorous field. The parent was recently told by our mutual contact about the “natural” methods of inflammation reduction that we’re using and was intending to start their son on them right away. The other unfortunate timely reminder was the critical role that nutrition plays in the overall treatment plan – since none of the doctors along the way stressed this to his parents, they didn’t take aggressive steps to help their son use his own system to fight the tumor off. Needless to say, stories like this lead to sleepless nights, although this doesn’t help us right now (we’ll have to loop back down the road to document and layout the roadmap of the playing field for others to learn from our research, perhaps through a condensed version of this blog).

Anyhow, we’re tying to use all of our energy to keep our chins up and focus on the “prize” – Chase’s clean MRI / PET scan. Speaking of which, we’ve decided not to do a PET scan until the very end (after the MRI’s show significant reduction of the tumor and ideally complete elimination). After talking more with the radiologist, we’ve concluded that the data from the scan won’t really change our strategy in the short term – we’re going full speed ahead to blast this thing from every angle knowing that something (or all of the above) is working anyhow, regardless of the level of activity in the tumor. The MRI clearly shows the lesion is there and is “on the run”. When we need a PET scan at the end of the treatments we’ll get one to demonstrate that there’s no “hypermetabolic” activity at all in the area. In the meantime, it’s like a hurricane (pardon the analogy) that circling around in the water and will eventually hit ground somewhere (i.e. “light up” with activity) unless it is diffused beforehand. Our goal is to attack it from all angles while it’s behaving as a low grade lesion and keep praying that it’s complete wiped out before it has a chance to light up… at this point, there’s no reason to change the strategy until Chase is safely evacuated…

Thanks again for all the prayers and support! We need all the uplifting we can get to stay above the fray – as they say, “there’s nothing to fear but fear itself” and at times that it’s easier said than done. In thee, O Lord, do I put my trust… Bow down thine ear to me; deliver me speedily…I will be glad and rejoice in thy mercy…Make thy face to shine upon thy servent: save me for thy mercies’ sake. Psalm 31


Love,

John & Carol Sammut
Chase & Barbara Ann

Happy B-Day Carol

We had a great time celebrating Carol’s birthday this weekend. We got together with Carol’s family and some friends (the Cervera’s) up north and we really had a lot to celebrate (particularly Chase’s latest MRI, in addition to the b-day). Chase bought mommy a woopie cushion – he thought it was too hilarious. That way she could toot as loud or often as he does (even though we’ve “tapered him off” a bit). It was a good opportunity for Chase to get together with his cousins for the first time in over a month, since this ordeal started. He really enjoyed it and it did wonders to lift his spirits. He even got a bit of “freedom” for a couple of hours – we de-accessed his port and let him run around and even swim for about an hour. The “payback” was having to get the needle again to re-insert the port – this is still the most traumatic part of the treatments for Chase, even though his aunties Cathy and Corinne did the job and made it much easier for him. We’re hoping that this was another “boost” in his confidence to get over his apprehensions and it easier going forward.

Per the Burzynski Clinic’s instructions, Chase’s dose of ANP stayed at 240 ml / 35 ml throughout the weekend (no increases since Friday, even though he’s been tolerating it well). They just wanted to avoid a situation where he might run into complications during the time when Houston was evacuated and it could’ve been difficult to get one of the doctors on the line. Luckily, hurricane Rita didn’t affect the clinic at all and they’re back in action this morning. So, Chase is able to increase his dose to 250 ml / 35 ml today and this means he’s officially in the target range for all the doses – depending upon how the PET scan on Thursday goes, we may try to target as high as possible (even as high as 400) if there’s radiologic activity in the tumor, or we may hover around 300 if the activity is low or doesn’t “light up”. We’re looking forward to receiving that last piece of data to get the full picture on Chase’s tumor at the moment.

We also had a good meeting with Chase’s teachers and the school nurse on Friday. They recommend easing Chase back into the program, but a lot slower that we had initially thought. They are suggesting perhaps an hour initially, then two and maybe (if he adjusts well), get to ½ day next week. This is probably sound advise, since the other kids were also eased into the kindergarten schedule very gradually, and reportedly still have difficulty getting through the day (without the extra fatigue of ANP treatments). Also, since we’re still continuing to increase his doses, we could hit a “speedbump” where he eventually gets to his limit and could have a significant problem pop up while at school. We might need to back off on the idea of getting him in the full swing until his dosage has stabilized and we’re sure he can handle it. We’re also hoping to get Chase over the apprehension of having to explain to other kids about his backpack, the situation with his medicine / treatments, etc. He’s not really excited about getting started, but we’re praying that he makes some new friends and quickly gets over the concerns so he can get back to “normal” soon.

Thanks again for all the prayers and support! Chase is doing extremely well in this situation and his treatments are going as smoothly as we could hope for.

Love,
John & Carol Sammut
Chase & Barbara Ann

Late Breaking News on Chase's MRI

Chase’s tumor appears to be shrinking! We just got the MRI results of what was intended to be a new “baseline” test and we were warned not to expect too much, since he isn’t even up to his full dose of ANP yet and the tumor would most likely have grown during the period from diagnosis to beginning treatments, particularly since the pathology indicates a Grade 3 glioma (anaplastic astrocytoma – high grade / aggressive type of cancer). The radiologists reviewing the MRI results indicated that a typical grade 3 glioma would “mushroom” (could double in size every 2 weeks). Thus, just not having it grow much would’ve been a victory…

Yet, the MRI indicated that the tumor definitely didn’t grow and it appears to have shrunk by 5-10%!! This is just awesome news! All we were looking for was a slight indication that the treatment plan we’re using is working to firm up our resolve to stick with it vigilantly and to demonstrate to “traditional medicine” that there was no reason to take the kind of action they were recommending (radiation and / or chemo). Well, we certainly have that kind of resolve now. Ironically, Doctor Jurida at the Burzynski Clinic recently shared with me a case where one of his patients had a 5-10% reduction, which the monitoring doctor continually referred to as ‘stable”; however, this happened repeatedly over 9 months, so he told his patient that if his case is ‘stable”, how come the difference between the first MRI and the last MRI over the 9 months shows a 50% reduction (get the point)?

Unfortunately, we didn’t get to conduct the PET scan to get more data on the level of radiological activity of the tumor. During the anesthesia, Chase wasn’t breathing well so they had to intubate him. Then, after the MRI, we were told that the material they would need to inject for the PET needs to be in his system for two hours before starting the test; thus, he would’ve had to wait in recovery for 2 hours while being intubated and then head to the other test area. This just seemed like too much to subject him to under the circumstances. In hindsight, they should’ve injected the material for the PET before conducting the MRI (but that would’ve required too much foresight, since these kind of “back-to-back” tests never happen). Anyhow, we’ll have to wait until next Thursday to conduct the PET scan, so we’ll just have to settle for the good news from the MRI for now.

This is definitely reason for us to celebrate! We’re planning to take Chase to one of his favorite spots (Chuckee Cheese or Jeepers)… We’re pleased to share the great news with everyone and we thank you all for the overwhelming support. Keep the Prayer Trains Rolling… they’re definitely working!

Love,
John & Carol Sammut
Chase & Barbara Ann

Pray for Chase's MRI and PET Scans

Chase is settling back in on the home front. He’s slowly working through the packages a bit at a time – it’s a bit overwhelming (thanks to all for the thoughtfulness)!. He has accumulated so many things that we’d like him to go through the rest of his stuff and gather up items to donate to the children who lost their things in the hurricane. Apparently, some of them have relocated to the Detroit area to start again and aren’t too far from us. Overall, he continues to be in great spirits, but certainly has his ups and downs. This is understandable, particularly since his doses of ANP are really getting up there – he’s now at 220 ml x 6 doses per day of #1 and 35 mll per dose on #2. That adds up to a lot of extra fluid pumping through his system, in addition to the average of 5-6 tall bottles of water that he drinks per day (2-3 during the night). We’ve got him set up with a urinal in his room, which makes things much easier and we’re investigating an easy to use catheter so he won’t even have to get up.

We had the first meeting with a visiting nurse this morning – of course, Chase is weary of anybody from the medical profession at this point and wasn’t too excited to meet her. He seemed to come around a bit by the end of the appointment and we’re hoping he’ll develop a relationship to trust her doing the IV bag changes, blood draws, handling the catheter needle changes, etc. (at least alternating days, which would provide a big relief to mom and dad). We’re also continuing to sift through the info we’ve received on local assistance with food preparers, recipe options, etc – trying to stay creative at getting our targeted doses of fresh veggies and fruits into his diet in ways he won’t have too much trouble with. Carol scored big today with a stuffed green pepper recipe that he loved (looked just like the Maltese recipe she used to prepare and he didn’t notice all of the substitutions, like soy for the meat). He happily gobbled it up and asked for seconds. This is the ongoing challenge – how to have him “eat it and like it”… we win some and lose some…

So tomorrow will be a big day with Chase’s new MRI and PET scans. We were able to work with the anesthesia department at Beaumont hospital to get them to coordinate in such a way that we could have Chase “under” for both tests and transferred between areas so that when he wakes up, it’s all over with in one painless swoop, along with having his catheter needle changed. This was a lot harder than it sounds, since these tests are conducted by different departments, who don’t use the same support staffs, and have never done it this way (we’re practically introducing these colleagues to each other, with such an “extraordinary request”, but it just seemed logical to us that these would be done at the same time since for each test he has to fast, undergo anesthesia, etc). Another ground-breaking area for us.

We’re really praying that Chase’s procedures will go smoothly tomorrow, that he won’t be too apprehensive going for another hospital visit, and most importantly we get a good indication that his treatment plan is starting to be effective. Although it’s early in the process, it’s never too soon for his miracle to begin unfolding….

We’ll be coaching him to dream about his angels watching over him during the several hour procedure and hoping that he isn’t too disoriented when he comes back – the last scan took him “out” for the rest of the day.

Thanks for all the support!

Love,John & Carol Sammut
Chase & Barbara Ann

Chase is Back Home Safely

Chase is ecstatic to be home and sleeping in his own bed for the first time in several weeks. So much so, that he chose to forgo the opportunity to open up his welcome home / get well presents until tomorrow. He just wanted to go straight upstairs, watch a bit of TV, chill out for a while and then crash early. That was the sentiment of the whole family, so we followed his lead (except me to take a short break to write the update).

Barbara came to the airport to greet Chase, along with Auntie Grace and they decorated the porch and his room for him, along with lots of messages from his cousins. He’s just thrilled to be back in familiar territory and looking forward to getting together with his cousins this coming weekend (his favorite thing to do).

Our exit meetings with the doctors at the Burzynski Clinic went well – Dr. Burzynski was very encouraging and optimistic. We’re certainly expecting good things – hopefully soon (although we’re not looking forward to returning to Houston – let’s just say, it’s not on our top 10 list of places to visit, from traffic to weather, to construction, etc.). We have new MRI and PET scans scheduled for Thurs; however, they aren’t necessarily expected to demonstrate progress just yet (although it would be great if they did) – they’re really intended to be our “baseline” from when we get Chase up to his target dose (or close to it). From there, we’ll be monitoring with MRI’s about every 5 weeks and hoping that the following scans will demonstrate some initial progress. The fact that Chase was able to get so quickly and “uneventfully” up the curve of his ANP doses is an encouraging sign to the doctors that his system is using the “boost” to do the job it’s intended for (i.e. if it wasn’t working, it would typically have more difficulty accepting the infusions).

We have several more things to work out on the home front this week to get things “stabilized” with his ongoing treatment plan. Over the next couple of days, we’re interviewing / meeting with a couple of home-care nurses to select one that will assist with his ongoing bloodwork (every other day), catheter needle changes (weekly), etc. We’ve also got meetings with two food preparers in the area this week, hoping to select one to develop a weekly meal plan, assist with natural ingredient selection, prepare a couple of the meals to lighten the load, while teaching Carol some of the vegan recipes, etc. We also have to follow-up with the local Pediatrician and Oncologist who will be monitoring the treatment plan and providing ongoing reports back to the Burzynski Clinic.

Overall, we’re glad to be home and anxious to get over the hump with “settling in”. If we can get all these things worked out this week, we’re hoping to be in a position to get Chase to start school next week (at least half days) and come home for a good home cooked lunch with mom. That will be a huge milestone on the way to normalicy on the home front….we’re not far now and we can see the light at the end of the tunnel…

Thanks for all the support and prayers – we’ve collectively succeeded in getting Chase back to familiar territory and hopefully soon back to the routine he remembers (at least close)….

Love,John & Carol Sammut
Chase & Barbara Ann

Chase is Heading Home!

Well, everything with Chase’s ANP treatments continued developing as well as we had hoped and tomorrow morning is the “discharge meeting”. We just need to demonstrate that we have a good handle on all the procedures that we’ll be expected to perform from home to support his ongoing treatments, complete more paperwork, meet with the doctors (including Dr. Burzynski) and we should get the green light to return home. Tom Wheeler’s Angel network is picking us up at the local private airport again – this will really come in handy because the family accumulated lots of things locally (juicer, smoothie maker, lots of supplements, a child trailer to pull behind the bike, etc.) that we’d rather not have to replace or ship home. We can’t thank you enough Tom!!

We had a great final weekend in Houston – a visitor from my fraternity (Bill McCormick and family) drove over from San Antonio and made it a lot of fun. They joined Chase for a game of bowling (his latest diversion) and video games, that he can afford with all the quarters he’s been accumulating from adhering to his diet and supplement plan. They have a 4 ½ yr old (Charlie) who was quite impressed (?) to see Chase eat stuff like zucchini, egg plant, broccoli, and swallow “horse pills” with nothing but a sip of water. He’s proud of himself, and rightfully so – now up to about 25 pills a day with no fuss. We’re continuing to slowly get him off the decadron (steroid) – he’ll be down to 4 mg per day as of tomorrow and, so far, no side effects (getting him off this drug will be a major accomplishment). As of tomorrow, Chase will be up to 200 ml per dose of ANP (a huge milestone) and his doctors are very pleased and optimistic about the progress so far.

We recently received another affirmation of the power in the direction we’ve chosen for Chase’s recovery treatment, a book entitled “The Maker’s Diet”. It describes a pretty drastic health situation that the author experienced and eventually overcame through nutrition (after the medical system failed him). One of the things that struck me the most was the parallels pointing to the importance of faith in the process, …”when I get through this, when God heals me, He is going to use me to accomplish great things. I know he has a plan for my life.” That’s precisely the way we feel about this situation for Chase and we’re excited to watch it unfold as we learn about God’s plan for us all – one thing’s for certain, we’re deeply moved and can never be the same. Yet, there’s no question that His plan is better than we ever imagined…

Thanks for all the prayers and helping us Keep the Faith! Looking forward to providing the rest of the updates from home!

Love,John & Carol Sammut
Chase & Barbara Ann

Detox Accomplised

This was an extremely busy day at the Sammut residence. It started by the arrival of auntie Grace at 6:30 am on the red-eye flight from Seattle. She was a huge help all day getting everything at the house sorted out as well as helping with Barbara. We were joined by a former neighbor, Zulma Hiske, who has had a lot of personal experience with what we were trying to accomplish. As a team, we managed to get everything that isn’t digestible purged from the house, basement and garage – practically a dumpster full of stuff, most of which doesn’t get used and probably isn’t needed anyhow. We also managed to get a number of “upgrades” pulled together- a new vacuum cleaner with a “heppa filter”, new cookware, an air cleaner, water purifier, etc. and removed the carpeting from Chase’s room. It was a much bigger job than anticipated but overall we accomplished what we set out to do. We’re now ready for Chase to come home early next week (hopefully on Monday).

Meanwhile, Chase and Carol had a good day in Houston. After a fairly uneventful treatment at the Burzynski Clinic, they went bowling and shopping in a local mall. He was reportedly in great spirits all day and is really enjoying all the quality one-on-one time with mommy. Barbara also had a great sleepover at her friend’s place, followed by a good day at school and is very excited to spend some quality time with aunt Grace over the weekend.

In short, we have a couple of very happy campers and a household that has been thoroughly screened of any intoxicants. We feel like we’re about ready for the next big step – managing Chase’s treatments from home. We’re still waiting to work out with his local Pediatrician and Oncologist how the treatments will be monitored, the visiting nurse’s schedule, etc. but we’re confident that all those details will get settled soon and we can achieve some semblance of a routine shortly. We’ve even received some good suggestions for natural remedies, as we requested, to address Chase’s new talent for tooting loudly and chuckling. We certainly want him to stay in good humor, but Carol’s good at finding ways to do that, so we’re not worried about cutting back on that one.

We hope all of Chase’s faithful supporters have a great weekend and we pray that everything stays on track with his treatments so that Monday morning is the last on-site review before the “official discharge” and the journey back home.

Lots of love and gratitude,
John & Carol Sammut
Chase and Barbara Ann

Rootin Tootin Chase

Chase’s treatments are continuing to go well on the anti-neoplastons; he’s up to 150 ml per dose of the first ANP and 35 ml per dose of the second (I failed to mention before that there are two IV bags along with a dual channel pump). As we recently were informed, it’s actually the second ANP with the lower dose that attacks the tumor and Chase is now at the max level for this treatment. The first ANP works to repair the tissue and this is the one that we need to get to 250 – 300 ml per dose, so we still have a ways to go, but so far, so good. His system seems to be accepting the treatment quite well and the fact that he’s been able to get to the max dose on the “tumor fighter” without significant side effects is a great sign. We also got the results today from the C-Reactive Protein (CRP) test we “special ordered”, which indicated that his swelling / inflammation wasn’t that high – this means we can start to slowly reduce the steroids over the next several weeks, as long as Chase doesn’t experience any side-effects (this would be a huge accomplishment that we’ve been praying for, because that’s the one that causes the worst of the side effects). This is unsanctioned (no surprise), so we don’t want to “leak” this back to the clinic.

On a side note, since Chase has been eating so many fruits and vegetables lately, naturally he’s been having increasing amounts of gas. He thinks this is great – at any time, he can walk up to mom and say, “I have a present for you” and make a loud toot, which invariably sends him off laughing hysterically. When Barbara’s around, she gets a kick out of his new “talent” too – they’re both at an age where this is just great humor. On the one hand, it’s a good indication that his diet is working, and his system seems to be responding quite well. On the other hand, we’re getting concerned that others (particularly classmates and teachers) might not find this new “talent” as humorous as he does. Of course the doctor would have us give him another medication (gas-ex or something like it), but we’d rather not continue to add to his mounting pile of tablets and pills, so we’re asking the nutritionist for natural remedies (without letting Chase know that we’re intending to rain on his tooting parade)….

With all the supplements, steroids, homeopathic remedy and general vitamins he’s taking on a daily basis, Chase is now up to over 20 tablets per day. Although he continues to be a good sport about taking them all (as long as we keep greasing his palms with quarters, dollars, and Chuckee Cheeze tokens), we’re getting concerned about inundating him with this stuff. We continue to focus on as many natural sources as possible for his vitamins and minerals (every kind of fruit and veggie we can find that he doesn’t mind eating), and every way we can come up with to package them (soups, smoothies, inside his waffles, etc.). This clearly has to be having a positive effect on him – it certainly is on the rest of the family. We’re definitely feeling the difference and seeing it on our waistlines (a nice side-effect for us).

On the home front, I found a new way to entice Barbara to cooperate with picking out her daily wardrobe – she got to have a sleep-over with one of her classmates, after picking her outfit for two consecutive days with no fuss and then packing for herself for the following two days. What a relief! The other tactic that seemed to work was waking her up for school with very little time to spare and telling her she overslept, we’re running late, etc. so we have to rush like heck to get out the door (no time to think about what to wear – put on the outfit that was laid out and go)… Only a few more days to go and we’ll all be back together (i.e. Carol will be the primary person dealing with this kind of stuff).

So far, it still looks like Chase will be able to come home after his treatment on Monday (keep the power of those prayers working). I’ll be heading back down to Houston late Thursday night or the really early flight Friday morning to spend the final weekend with him them Houston (at least for now). Auntie Grace (Sammut) is flying in from Seattle to spend some time with Barbara and hold down the homefront while Carol and I are focused on getting Chase up the last several rungs of the ladder to the target doses of the ANP treatments along with all the recommended nutritional supplements.

Thanks again for all the prayers and support, as well as the flow of encouraging messages! They are having a profound impact on us all – today, Carol met a new patient at the clinic who was “floored” by her positive attitude and outlook (which actually comes naturally to her). Keeping this outlook in light of the situation could only be possible with the outpouring of support that we’re receiving – there’s no doubt about the calling that we’re on. For example, Carol was put in a position to help that person start down the path on the right foot knowing that everything is working out perfectly according to HIS plan (which we firmly believe)!

Lots of love and gratitude,

John & Carol Sammut
Chase and Barbara Ann

Missing Home

Chase is continuing to do well with his treatments at the Burzynski Clinic. He’s become quite a centerpiece around there – the doctors get a kick out of tickling him and hearing him giggle (now that he’s warmed up to them). Some of the other patients that have completed their training programs and are getting ready to head home are taking his picture and exchanging addresses to stay in touch. He’s adhering quite well to the program overall and the biggest noticeable change with him is his weight – due to the decadron (steroid) that he’s on to reduce swelling, he’s gained about 6 lbs in the past couple of weeks and his cheeks are getting quite chubby. It just makes him all the more irresistible to squeeze – when he’s in good spirits (which is most of the time) he never declines to give a great big smile, especially to Carol – even in the middle of the night, as he gets up to go to the bathroom, he rolls over and gives her a big grin, which she can’t resist.

The thing Chase is missing most is being back home. He can’t wait to get back to the house and see our two cats – he mentions his favorite one (Karma) quite often, as she’s the only cat as he describes that is always “nice to me” (i.e. she’s the only one that lets him get away with doing whatever he wants, including tormenting her, without running away or swatting at him). He’s sure missing her and just being in his own space. He’s also missing Barbara and they’ve only been apart again for a day. She called him today on the way home and sang a song to him that she learned at school – he lit up and said, “that’s really good Barbara”, in his sweet voice. We should tape record this stuff and play it back for them when they start bickering after being together for a couple of days. Over the weekend, we reminded them several times that they would be missing this time together and they didn’t seem to understand what we were talking about, but sure enough, one day apart and they’re back to being sweet and wishing they could be together.

Carol is definitely looking forward to getting back home, particularly to her favorite season in Michigan – Fall. The extreme heat and humidity of Houston is really getting to her, as she likes to run and do outdoor exercising, which is pretty much unbearable there. She’s been managing to keep her routine going anyhow, but it’s not nearly as pleasant as back home – she often pulls Chase behind a bike in a carrier but he’s not very comfortable with this either and would just assume be indoors in the A/C (which really isn’t good for him). Needless to say, it’s a good thing the treatment training is coming to an end and it can’t happen soon enough. We can’t imagine what the parents do who have to deal with 6 weeks of radiation treatment cycles or worse yet, chemo cycles that involve extreme side effects. We’ll gladly live with the puffy cheeks, a few extra pounds, a bit of lethargy and frequent urination any day compared to what we’ve heard and read about with the alternatives that we’ve forgone.

As long as we start to see positive results, we’ll find a way to tolerate this regimen as long as it takes for Chase to fight off this tumor. We’re scheduling his first follow-up MRI for next Thursday (9/22) which will essentially be the “baseline” – i.e. since he will be just about getting up to the target dose, all of the changes in the tumor until then could be as expected without treatments, so from there we’ll be watching closely every 6-8 weeks for progress. Some patients have achieved fairly rapid progress, and others have endured several months of “normal progression” (including growth) before seeing the first signs of improvement. That is the challenging part of this battle, and the time when the strength of our faith and commitment will really come into play. We’ll be praying for the strengthening and deepening of our faith over this time as we continue to expect the best for Chase and do everything we’re learning about to slant the odds in his favor.

Carol is doing a great job as always, keeping Chase laughing and playing every day – it can be a chore at times (he certainly wears me out), but I can’t think of anyone better for the job than her. Thanks again for the continued support and prayers! That’s clearly what’s been lifting us up throughout this process and getting everyone through the stages of missing home…

With lots of love and gratitude,
John & Carol
Chase & Barbara Ann

Back Home to Detox

Everything went well with Chase’s ANP treatment today and they ratcheted it up again, now to 130 ml per dose x 6. He’s doing great, other than a bit tired occasionally (probably not a bad thing for us given his level of energy). We continued with our training at the clinic and made a video that we can refer back to when we get home. I’ve always been a bit queezy around this kind of stuff and wouldn’t you know it, just as Carol is videotaping me drawing blood and changing the IV bags, something goes awry (the blood draw just wasn’t working and something seemed to be wrong with the port). The nurse stepped in to get it straightened out and I just took a walk to ward off the nausea. Anyhow, it all worked out and now we have our home-made training video to look back on. I’m sure hoping we’re able to find a good homecare nurse who will help take care of most of this stuff when we get home – we’re trained and ready to step in, but I’d prefer that as the back-up plan and not the primary resource.

After the appointment, Barbara and I head to the Houston airport and back home for the next few days. Although they were saddened with the separation once again, we know it’s only temporary and as long as Chase continues to do well, he’ll be home next week. My next assignment is to “detox” the household. After reading about all the potential contributors to brain tumors, and getting several strong recommendations, we’ll have to remove all the cleaners, chemicals, and anything that could induce contamination, including the non-stick cookware. We’re planning to have the carpet in Chase’s room removed and refinish the hardwood floor. We’ll be getting new air purifiers, as well as a new whole house water filtration system (apparently there’s even more exposure through the skin from showers or bathing as drinking). Now that we’re getting Chase’s system as detoxified as possible, mainly through the diet improvements, we want to eliminate as many other potential contributors as possible.

So far, he’s going along with the increased vitamins and supplements, which we’re slowly introducing to him one at a time over 24-48 hrs so as to not inundate him and to identify if he should have an adverse reaction to any of them. Today we started the Boswellia (inflammation reducer) and this was a big milestone because it’s essentially a “horse pill”. We weren’t sure how he would react, but Carol showed it to him and explained that he should just swallow with a spoon of yogurt like he’s been doing with some of the others without thinking about it, and sure enough he got it down. That was a relief, because we were told that emptying the contents into just about anything would make it taste miserable. Now that we know he can take “horse pills”, we’re thinking of using that medium vs. the liquids for other supplements (like the potassium booster that he’s on) – it saves the huge hassle / struggle of having to make sure he drinks the whole glass of “slimy stuff” which is getting harder and harder to disguise.

The number of vitamins and supplements is getting quite cumbersome to keep track of – I’m starting to layout a spreadsheet by time of day and customizing it with updates as we go so Carol can simply check boxes to ensure she’s on top of the program, as well as the target number of fruits and veggies by category and meal. I think she’s finally agreed to let me try to organize it this way (despite the fact that she doesn’t want to be micro-managed or to become a “geek engineer”) – there just doesn’t appear to be any other simple way of keeping track of this stuff. As I get out of her way for the next few days, she’ll probably be liking the breathing room and maybe will warm up to these ideas (i.e. taking my intensity in small doses and coming back up for air).

Thanks again for all the support and prayers! We truly felt the warmth and serenity of the prayer network over the weekend and we’re having a good start to the week.

With lots of love and gratitude,
John & Carol
Chase & Barbara Ann

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

That Dang Pump Again!

Wouldn’t you know it – just when we think we’re “back on track”, the next day we find out the replacement pump only delivered 2 doses of 80 ml (vs. the 6 that it was programmed to deliver). We got that news late this afternoon and they have no idea why or how this happened. They actually had the gall to suggest it might have something to do with Chase’s backpack so he’s going to have to use that nerdy handbag for a while until we prove to them that it has nothing to do with their lousy, unreliable pumps. Now Carol will have one more thing to worry about - physically checking the output of the pump every few hours to see that it continues to deliver the programmed medication. We did receive a brand new pump today that was ordered from the factory, which I’ll be personally taking with me back to Houston tomorrow afternoon and using it as the primary pump (with the one that the clinic has had in circulation from other patients as the back-up). I’m not all that sure it’ll make a big difference, because I talked to another father of a pediatric patient who said he went through 20 pumps in 18 months, but that was apparently 2-3 years ago and he felt they had improved things considerably since then, with the help of all his input (like that made me feel a lot better). I’m starting to think we need to approach the medical OEM of the pump to find out who their contract manufacturer is (based upon the track record, I can guess a couple of the likely suspects) and perhaps see if EPIC can help them make a reliable one, but I’m not sure we have the time to fix their problems too.

I guess that means we’ll have to be vigilant about another thing – monitoring the pump / delivery system and having a spare programmed and ready to go at all times. At this point, we haven’t really lost much progress, since we’re still easing Chase’s system into the increased doses and tonight he’s on 90 ml x 6 (with 2 successfully given already); however, once we get him up to full speed (250 – 300 ml), we absolutely need to keep it there. Any set back at that point could mean several days to a week since we’ll need to ease him back up the dosage again. I guess the blessing here is that we’re learning our lessons while going up the volume curve so we’ll be ready to sustain the full dosage, once he gets there. By that point, I’ll probably be on a first name basis with the factory service technicians at this rate….

Meanwhile, on the home front, Barbara did it to me again. After having pre-negotiated and settled on the outfit of the day, gotten dressed and ready to head out the door, I look over and she’s welling up with tears in her eyes. So I ask what’s wrong (my first mistake –should’ve just head for the door) and, of course, she’s changed her mind and wants to wear something for warmer weather. I try to convince her that summer’s over in Michigan (we’re not in Texas anymore) – she reluctantly agrees but wants something underneath so she can take off the one that’s too warm when she gets hot from running around…I finally think we’re ready to go, then she starts about the pants (again, going to be too warm), “Whatever, just bring anything you want quickly and put it in your backpack so I don’t have to walk you into the class late again”… all the stuff I had no idea was going on at home while I would be heading to work or while I would be out of town… I sure hope Carol gets back up here before I lose my mind!

On a positive note, we had a great follow-up session with the nutritionist, reviewed Chase’s bloodwork again (looking good), discussed the strategy for supplements and ongoing testing to monitor the progress. We’re focused on anti-inflammation and immune system boosting to start with, while continuing to suppress sugars, simple carbs, etc. and stressing all the organic fruits and vegetables. We feel really confident that this is progressing in the right direction. We’re assessing how far to take this aspect of the strategy, which we now believe is at least as important as the ANP treatments. We’re even considering finding some help for at least a couple of weeks who will manage the process of selecting the meal plan (based upon our goals), obtaining the right ingredients, demonstrating how to prepare the meals, etc. We’re getting a lot of help with this legwork from our former neighbor, Cyndi Summers, who has a passion for this kind of health stuff and is doing a ton of research to supplement the advice we’re getting from the nutritionist. We’re definitely on the right track there….

That’s it for now. Chase was a strong trooper again today – ate well, went bike riding and played baseball with Carol. Barbara and I are looking forward to meeting up with them tomorrow evening. I’m hoping she sticks to the outfit we picked out tonight (or at least is expedient in changing her mind). If we can finally get the new pump programmed and administering the right dosages, Chase should be up to 130 ml x 6 by Monday, which is more than halfway over the minimum target. As soon as we get him up to the target range, we’ll bring him home and try to get back to “normal”. With all your prayerful support, we’re confident his system will accept this elevated treatment and continue to get stronger as we go, on our way to the record speed complete remission!

With lots of love and gratitude,
John & Carol
Chase & Barbara Ann

Back on Track!

Chase was able tolerate the “normal” dose that he was intended to receive over the past day with no major side effects! This is what we were praying for and, at this moment, he’s up to the next level (80 ml x 6) . Now he did complain of some slight headaches, which is somewhat to be expected because the treatment is attacking the tumor and thus causing some swelling / inflammation in his brain. Typically, the doctors would increase the prescription of decadron (a steroid); however, we’re hoping to get the desired anti-inflammation effect through some natural products / vitamins so we can minimize the side-effects of the steroids (usually causes bloating, particularly in the face, increased weight, etc.). There’s typically a downside with the standard medications, so we’re working to avoid them as much as possible through alternatives. Chase did have to have his "access" changed on the port for the first time today (weekly needle change to administer the IV) - this was quite painful (mainly because of his anticipation of the needle) and earned him $5 to spend at Chuckee Cheeze after the appointment.

We have another consultation with the Nutritionist tomorrow to review his bloodwork (which looked good to the doctor at the Burzynski Clinic); however, we’re looking to the nutritionist to advise on more strategies to achieve the desired results with natural remedies, particularly through his diet. The important thing is that with all the fluids flushing through his system, we have to stay on top of his electrolytes, potassium, calcium, etc. So far, we’ve managed to keep everything in balance through the dietary recommendations we’ve been adhering to (with Chase’s cooperation!) and this avoids having to use more meds or unnatural means. Carol has been doing a great job blending the desired ingredients into things that resemble what he typically likes to eat in such a way that it hasn’t seemed like too much of a transition for Chase; however, it’s a constant challenge to anticipate what he’s going to want for the next meal (particularly when running errands, including the treatment appointments). The alternative is to use the cafeteria service, which is definitely not desirable and conducive of the kind of progress we’re trying to achieve. Keep up the great work Carol – it’s well worth all the effort!

Many have asked about how Barbara is handling this whole situation. Fortunately, she’s also been a pretty good Trooper and big sister. She’s usually trying to accommodate Chase and keep him laughing (which is good therapy in and of itself) – they tend to like the same kinds of movies, cartoons, potty jokes, etc. Although they often have their little spats, they would definitely prefer to be together than apart and even when they say their mad at the other, when they’re separated the first thing they ask about is their sibling (as did Barbara this morning and again tonight). She had a wonderful first day of 1st grade and really likes her new teacher. Barbara also started gymnastics again today and has a couple of old friends in the class (always a plus)! Overall, she’s adapting well, and is praying with the rest of us for her brother to get better soon. She knows his eye hasn’t been healed yet, but beyond that, we’ve just maintained her innocence in this whole thing. However, she is starting to wonder about the number of packages waiting for Chase, all the cards, etc. When she asks, I just tell her she would want and surely get the same treatment if she had the number of doctors appointments and medicines that Chase is getting. She readily agrees and is glad she’s able to start school now and is hoping Chase can join her soon. One little anecdote with Barbara is how much I underestimated the job Carol has with picking out her clothes for school. I almost lost my mind with this job and had to finally put a timer on it to get a final decision before threatening to take away privileges (like bedtime stories) . Needless to say, I didn’t make that mistake again and we have her clothes for tomorrow laid out and agreed to already!

After getting Barbara around today, I tended to the growing list of follow-up items and issues on the home front, since no-one’s been home for a few weeks. I definitely don’t intend on doing grocery shopping or managing the mail and bills for long either – another good reason to get Chase healthy and Carol back home! Overall, we feel Chase is back on track. I managed to get a brand new IV pump express ordered from the manufacturer which will be delivered tomorrow and I’ll take it back to Houston with me (no more missed doses!); we’ll use the one from the clinic as a back-up in the event that the primary malfunctions. Also made a lot of progress on getting some of the augmenting therapies going (the homeopathic remedy started today – RUTA 6 and Cal Phos), tracked down mangosteen juice and inflavinoids (natural inflammation suppressor), etc. All in all, we’re making good progress and getting stronger in our daily affirmations, prayers, and visualization of Chase becoming the “star” patient with a rapid complete response / remission.

Thanks for all the support and prayers!!

Love,
John & Carol
Chase and Barbara Ann

A Hard Day but Moving Forward

During Chase’s appointment for the ANP treatment today, we discovered that the IV pump has been malfunctioning (as I suspected yesterday, in reviewing the prior days output, but was shrugged off by the tech). The output cycle today confirmed that only about ½ the dosage programmed was administered for the prior two days. This was pretty frustrating, since our whole objective right now is to slowly but surely ratchet up the doses each day until he achieves the max target level, which is what is really needed to attack the tumor. We swapped out the pump and reprogrammed a new unit for another slight increase in dosage and we’re hoping that Chase doesn’t have an adverse reaction, since he really hasn’t had the dose that we had planned over the past couple of days. This will really mean a significant increase over the last actual dosage administered and what we’ve been trying to avoid with the slow daily increases. On the positive side, if he doesn’t have an adverse reaction, things are looking pretty good for him to continue with the daily increases. He started last Wed at 10 ml per dose and 6 doses per day. At an increase of 10 ml per dose per day, he’s now expected to be at 70 ml per dose and a total of 420 for the day (although he really only had 150 yesterday). We’re praying that his system accepts this dosage today, so he can get back on track with 80 X 6 tomorrow and so on until he’s at around 250 – 300 ml per dose or 1500-1800 for the day.

The hardest part of the day was parting ways after the appointment for the next few days. I have to take Barbara back home to start school tomorrow and Carol stays back with Chase to continue the treatments. We’ll get back together on Fri evening for the weekend and will probably do the same thing again next week (this time for the full week). It was probably the most difficult juncture since the beginning of this challenging ride, since we’ve all been in this side by side every step of the way and we’re getting to a very important part of the treatment when the doses will be getting to pretty high levels that often cause short-term side effects that could slow down the progress. Hopefully that won’t be the case with our little Trooper and he’ll continue to make us proud. He was sad to say goodbye to Dad and his sister, but understands that he needs to keep getting his treatments so he can get better and hopefully get to school himself pretty soon.

Chase did great on his tumor fighting regimen today – he ate some cherry tomatoes this morning ($2 worth) and then ate a concoction of plain organic, low-fat yogurt with a few tablespoons of flax seeds, a tablespoon of flax oil and a ½ quart of blueberries. You can imagine what that tasted like (I tried it just to know what I was putting him through and to show him how good it was) – believe it or not, he didn’t even flinch when he realized that each spoon was worth $0.10. He at 20 of them and gladly took another $2 (this even surprised Carol who after seeing the breakfast bowl looked at me and said, “Good Luck”). I was pretty pleased because this was really high on our Nutritionist’s list of recommendations and checked several boxes for the day already. He left the last bite for me as 20 was all he could bring himself to swallow, so I took it with a smile (“yum”) – he smiled back and grabbed the two bucks to put it in his new wallet from the Aquarium, which he’s really proud of.

It seems every day he shows up at the clinic with something he’s excited about (like his new backpack, space ship drinking bottle, etc.); however, today he seemed kind of “down-and-out.” Perhaps realizing that right after the appointment we were heading in different directions, or just one of those days (we’re all aloud to have ‘em). Anyhow, with the support of his angels and this prayer network, he’ll get through the full 6 doses today and wake up tomorrow happy and excited about another day. The one side effect that is to be expected with this kind of increased volume of liquid intake is frequent urination (sometimes more than hourly) – so far he’s keeping up, but what a challenge to realize 2-3 times in the night that he has to get up, take his backpack and head to the bathroom. At some point, we might have to revert back to pull-ups as a trade-off to letting him get better sleep, but until then he’s been up for the challenge – just another thing we’re proud of him for (at least for this one he hasn’t asked for money, other than his standard quarter that he was getting before this adventure– maybe that’s how all this negotiating got started). Oh well, we’ll figure out how to undo that conditioned response after he over this challenge; until then, the motivation is a good tool.

Thanks again for all the prayers and support!

Love,
John & Carol
Chase & Barbara

A Great Therapeutic Weekend

Chase had a great therapeutic weekend with his cousins, Chelsea and Alexis, who drove over with Uncle Mark for the weekend. After his clinic appointment and church on Sunday, they went with him to the Space Center. This was just what he needed – to get out and have some fun, like he’s usually pretty good at. He’s generally quite interested in space (in fact that he’s always talking about wanting to buy a rocket) and he seemed to be into most of the Space Center exhibits, but he didn’t last too long (his energy was waning as we got later in the afternoon). We got him a healthy snack and that seemed to give him a bit more boost, but he’s just not up to speed yet and he crashed out pretty hard during the drive home.

On Monday, after his treatment, we took Chase to the Aquarium. This was definitely a “hit” – it was early enough in the day so he had plenty of energy and he was excited about everything he saw (sharks, alligators, snakes, etc.). He also enjoyed a few “light” rides (train, merry-go-round, ferris wheel). We think one of the most important keys to keeping him engaged was having the right kind of snacks – we’ve been plowing through the Jeanne Wallace report and it is full of incredible info on how to balance his diet. We can already see that following the suggestions is making a huge difference – Carol’s staying on top of this and it’s really working. For the next several months, there won’t be many restaurant meals, but this is a small sacrifice to help Chase win his battle.

Jeanne had several other analogies in her report that really rang home for us. One analogy was that brain tumor diagnosis is like being in a major game of tug-of-war against a formidable opponent – cancer. Chase’s medical treatments and each nutritional / botanical agent we use represents an additional team member, who grabs the rope and adds to Chase’s pull. We agree completely – this effort is in addition to the growing ranks of prayer support that is clearly working strongly on his behalf.

Another interesting analogy relative to the nutritional side of Chase’s treatment is to imagine this as a battle / war and the brain tumor as an “enemy camp” with many roads leading out of the camp. The idea is to use as many natural agents as possible to synergistically target different aspects of cancer biology and compliment the medical treatment. In order to effectively control / defeat the enemy, we need to set up a road block on as many roads as possible. Some of these are natural anti-inflammatory agents to block the tumor from growing, while others are immune boosters, or just ways of cutting off / reducing the supply lines to tumor.

We can really relate to these approaches as we realize that it will take an all-out effort to ensure that Chase has every chance to succeed. We are now visualizing Chase’s story being displayed at the Burzynski clinic as his fastest case of complete response (i.e. total remission)! We firmly believe we are on the right track and it’s just a matter of time before we see the results. With all the additional angles we’re giving Chase to defeat this disease, it may be hard to determine what was the “final blow” in the end, but that’ll be a good problem to have – we’ll let his doctors guess what it might’ve been after he’s given a clean bill of health.

In the meantime, he’s continuing to be a great sport and having fun with this “experience”. He sees all of these challenges as a way of earning more money. For example, today we wanted him to eat cherry tomatoes as part of his breakfast, which he wanted nothing to do with initially. But at a quarter a piece, he wanted to eat as many as gave him and quickly converted the quarters into dollars. Then came the afternoon snack that included carrot sticks – once again, he really wanted something “sweet” but at a quarter a piece, he was all for ‘em. Now he’s actually asking what he can do to earn the next buck (i.e. “when do I get to take the next meds”). It’s a good thing we named him after a large bank – ironically, this weekend was the first time he realized this. We saw his name on a large office building in Houston and he got a real chuckle out of it. He saved up enough to get a black belt karate outfit and a kick bag from Target and he’s got his eye on some other things he’s saving for (in addition to College – he recently accumulated enough for his first $50 bill). At least we don’t have to wonder how to motivate him to cooperate with all of these treatments and remedies…now it’s only a matter of what it’ll cost…

Thanks again for all the prayerful support! You’re all a part of Chase’s winning tug-of-war team against this tumor!

Love,
John & Carol
Chase & Barbara

Happy Labor Day Weekend!

We continue making progress with the anti-neoplaston and our training on how to administer the treatments. The sessions are getting shorter as we are able to go through the routines more quickly. So far, no reactions or adverse effects – which continues to be encouraging. The quicker we can get Chase up to the full dose, the quicker we’ll begin to see it’s efficacy. We took Chase shopping to find a backpack that could be use to more conveniently carry the pump and IV bags around with him. Surprisingly, he didn't pick Spiderman - this time it was Ugio (sp?) and he’s happy to be self-sufficient with his backpack.

We also had a good conversation with Dr. Schiller, the Dean of Chase’s school (Cranbrook) to discuss the situation and what could be done to accommodate his needs. They were aware of the diagnosis and more than willing to work with us to come up with a plan, when Chase is ready to return. This was very encouraging, because we’re hoping to get him back to “normal” as soon as possible. This will probably mean ½ days at school for a few weeks, so that he can come home and have a lunch with Carol that is designed to maintain his counts per the guidance of his Nutritionist. It will also enable him to get some rest as we help to boost his immune system.

Overall, this was the end to a pretty successful week. We are feeling really blessed with how smoothly things are going – this week, we managed to get Chase’s port installed, find a comfortable place in Houston, start his treatments, get a routine going and really feel like we’re moving in the right direction. We continue to get supporting affirmations that we’ve chosen the right treatment program for Chase, and we’re augmenting it with homeopathy, good nutrition and lots of love. We definitely see him responding and getting stronger every day.

Chase’s sister, Barbara, is excited about going back to school next week. I’ll take her home on Tuesday afternoon so that she can be ready to start with her first grade class on Wednesday. Fortunately, it’ll be a short week so we can come back to Houston on Fri afternoon to be with Carol and Chase over the weekend. Then, if all continues as scheduled, they will have one more week of on-site treatments and training before we can all head back home together around the 19th or 20th.

We hope everyone has a great holiday weekend. We’re going to try and keep things “light” here – Chase will continue to have daily appointments at the clinic, but they should be fairly short, just to review his #’s, give him another dose, program the pump for the next day, etc. If all goes well, we’ll be back in training on Tue with a significantly higher dose and well on our way up the curve.

Thanks again for all the prayers and support!!

Love,

John & Carol
Chase & Barbara

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