Wednesday, August 31, 2005

Chase's Treatment is Underway!

Chase made another important step forward today, with the first application of his treatments!

We started off with a meeting at MD Anderson in the morning. As we suspected, they recommended the “traditional” treatment plan, starting with radiation and (depending upon how their pathology analysis comes back), they’ll probably recommend some type of chemotherapy as well. They didn’t receive the sample from St. Jude yet (expected by tomorrow), so we don’t have a second opinion on the pathology to evaluate. We’re hoping to get the second opinion by the end of the week and with their pathology report, they will provide a complete recommendation for the treatment plan.

The most pleasant surprise about the MDA meeting was that they weren’t too offended when we mentioned that we were investigating alternative therapies, including the Burzynski Clinic. Although they didn’t expressly recommend it, they couldn’t really provide any legitimate reasons why we shouldn’t pursue it. They indicated that although Burzynski had been reporting successful treatments for quite some time, they hadn’t seen any of his studies published for “peer review”. I happened to have a copy of his Phase II trial study on me, which had been published in Drugs R&D in 2003, and reported very high rates of “complete response” (total remission) and partial response (> 50% reduction), with the majority of participants falling into one of these categories and another 30% having stabilized. They thought these would certainly be very promising statistics if they were in fact for patients with this specific condition (which the report indicated). To that, they simply said they weren’t aware of the results and whether it had been subject to “peer review” (pretty remarkable, given that these practices are < ½ hour drive apart). They also wondered whether some of the reported results from the Burzynski studies were based upon “residual effects” from the radiation that patients had previously received – I didn’t bother rebutting this, but from reading the study, it was clear that the patients who underwent radiation were required to wait at least 8 weeks before starting on antineoplastins (probably to remove this specific potential argument).

Thus, with no glaring reasons not to proceed with the “alternative therapy”, we pressed on to the initial trial at the Burzynski Clinic in the afternoon. We spent about four hours going through the details of how the treatment is administered, since once we leave we’ll be responsible for managing the treatments, along with our local Pediatrician and Oncologist. During this time, Chase was given the initial very small dose and was monitored for any potential reaction to the antineoplastins. Fortunately, there were no issues and by the end of the day, his pump was programmed to continue to administer the treatment for the next day (6 more treatments, each administered every 4 hours with a timed interval) but at a very small dose. Meanwhile, we learned about the various potential failure modes of the pump, the procedure for changing the IV bags, monitoring the treatments, etc.

So far, so good. Chase was once again a great sport, although he’s starting to push this negotiating a bit far (he wouldn’t even get on the scale at MDA until Carol gave him a quarter). Then at the Burzynski Clinic, they had to access his port to begin the treatments by piercing a needle through his chest and hooking up the hose. He earned another couple bucks (milked it for what it was worth) and then went on playing cards with his sister, while we were undergoing training. By the time we left, he seemed already used to the fact that he’s got a hose, pump and bag attached to him and was carrying it around with him wherever he needed to go. We’re still concerned that he’ll wake up to head for the bathroom, forgetting it’s there, so Carol will be sleeping by his side to monitor him closely as soon as she hears him move. Hopefully after a few nights like this, it’ll be second hat to the little guy.

All in all, it was another successful day in our journey to get Chase on the road to recovery. We still have several “irons in the fire” in terms of identifying alternative therapies, in case his tumor doesn’t respond to this one, but this sure seems like the least “invasive” so far. We did get a return call from Dr. Friedman at Duke who is ready to provide a recommendation on an advanced trial plan, once we get another pathology report from his highest regarded source, Dr. Peter Berger out of Johns Hopkins (that will come after the MDA report is issued). We also got a return call from Cedars Sinai and they are ready to evaluate the possibility of using their new precision surgical approach that is also non-invasive (through the nostril) – they are reportedly the only practice in the country using this technology. We need to get them a copy of the latest films from the post-biopsy MRI and they will give us a response in a few days. In addition, we are also awaiting a response from Mass Gen in Boston on the results they’ve been getting with the Proton Beam radiotherapy for pediatric brainstem applications. They returned the call but need more info to provide an assessment. Finally, we are also in contact with a treatment center in the UK that has been developing alternative therapies as well and we are expecting to get some guidance / feedback soon.

Hopefully, we’ll have a good feeling about Chase’s response to the “non-conventional” therapy soon, before having to pursue other options. We remain very optimistic about this approach and we’re keeping the faith! Thanks again for supporting us with your prayers – we’re continuing to hold Chase in the light and seeing his immune system rise up (with the help of the anti-neoplastins) to rapidly fight off this tumor! We finally feel like this 1/3 of our overall wellness plan is beginning to get on track. With God’s help, we’ll begin to see the results soon…

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

Tuesday, August 30, 2005

Another Step Forward

Our initial consultation with the Burzynski Clinic today went as well as we had hoped. In reviewing Chase’s case, they indicated that he is a very strong candidate for this type of treatment – the types of patients that have responded the most quickly and effectively have had this specific type of condition (brainstem gliomas of some type, and the more aggressive versions – such as Astrocytoma – tend to react well to the antineoplastins). In addition, given the fact that Chase hasn’t lost any weight and seems to have a fairly strong immune system, it should enable them to see his system’s reaction to the treatment fairly quickly. Occasionally, they’ve seen patients like this overcome the “active” part of the tumor within a couple of months and then several more months for the remaining part of the tumor to react and shrink. One key piece of data that we haven’t gotten to date, is the portions of the tumor that are actively / rapidly multiplying – apparently, this will become more evident with a baseline PET scan. We’ll have to wait until we get back home to have one conducted and then begin to monitor the level of activity in these “hot spots” over time.

Once we start the treatments (hopefully tomorrow) we will slowly ramp-up the concentration of the antineoplastins being administered over the course of 2-3 weeks so Chase’s system can adjust, targeting < 25 days to reach max dosage, if we don’t have to interrupt the pace due to adverse reactions. The treatment will be conducted 24 / 7 through a pump that will be carried in a small bag or backpack, which we will be trained on tomorrow. Carol explained to Chase that he’s going to be receiving this type of medicine every day for the next year or so, to which he really seemed puzzled – he said, “Mommy, how am I going to be able to sleep with this backpack”….she explained, “We’ll just set it next to your bed”… he still seemed puzzled, not understanding what other changes he’s about to embark upon but he’s sure been quite adaptive so far and we’re hopeful he’ll just take this in stride as well.

They conducted another full examination of Chase, which seemed to indicate once again that the only symptom he’s exhibiting from the tumor is the immobility of his left eye. This is very encouraging because it seems that the tumor is not progressing very rapidly and they felt confident that he would recover from the eye nerve palsy fairly quickly once the treatment starts becoming effective. We can’t wait for that day – this will likely be the first indication that he’s successfully beating the “bad guys”. The eye exam indicated that he still has pretty good vision, but his brain is compensating for the double vision by shutting off the left eye or favoring the right eye – in reading the eye chart, he showed much stronger vision in the right eye. Although this still doesn’t concern or surprise them (fairly typical for this condition), it certainly isn’t a comfortable feeling for his parents to observe or acknowledge. Nevertheless, we’re keeping the faith and seeing / visualizing him fully healed with perfect vision, etc. and “divine order” coming to pass.

The only “downside” of the initial consultation for Chase was the fact that they had to draw his blood once again, which he was obviously not happy about. But after negotiating for a couple dollars and shedding a few tears, he was on his way out of there and asking about getting some more burritos to eat for dinner (another good sign with his strong appetite again). We didn’t have the heart to explain to him that this is practically going to be a daily occurrence once his treatments start. We are praying that things go smoothly tomorrow with the initial treatment so that we can start making some real progress on his road to full recovery. We have an appointment with MD Anderson in the morning, and unless they come up with some major dissuading information, we’ll keep the “traditional approach” in our back pocket as we head into the Burzynski clinic to get started with the first treatment in the afternoon.

Chase hit the sack early tonight and we’re hoping he gets a lot of rest so he’ll have the energy to get this recovery train out of the station tomorrow afternoon. Once again your prayers and all of the messages of encouragement are making a huge difference – we’re seeing this miracle recovery unfold right before our eyes.

Thanks for keeping the faith!!

With lots of love and gratitude,

John & Carol
Chase & Barbara Ann

Monday, August 29, 2005

On the Road Again...

Chase was a real sport again today, allowing us to check him in to Beaumont Hospital for another procedure. We explained to him that they would be putting in a “port” so that he could get his medicine without having to swallow pills or drink the “yucky stuff”… so he went along with it as “good news”, until he was being rolled down the hallway after another operation – you can imagine after the procedure as he was coming to once again, this time with a pain on the left side of his chest where they installed the catheter. He had tears in his eyes as he came back to see his mother and he was probably wondering why every time he wakes up from one of these procedures, he’s got another painful area that he didn’t have when he “went to sleep”. For our part, we’re wondering how long he’s going to trust us handing him over to doctors who are intending to “help him get better” but make him feel worse.

At least the procedure was successful and now he’s ready to go onto the next phase in the treatment. Our Oncologist at Beaumont, Dr. Charles Main, was a huge supporter and really pulled some strings to get Chase in for the surgery on such short notice after we contacted him on Fri afternoon to explain that we wanted to start an advanced trial early this week. Our Pediatrician, Dr. Maria Wozniak, also offered to support this treatment plan by administering ongoing blood tests and ordering whatever procedures are needed locally, once we return from the indoctrination in Houston. We are really fortunate and grateful, because this is a huge aspect of having a successful program (i.e. having the local medical support needed on an ongoing basis). Carol’s sister Cathy (a Nurse Practitioner) also came down on short notice to accompany us through the procedure and help us to decide on the specific type of catheter we wanted to have installed – this was a huge help since we have no experience with any of this and whatever decision we made we’ll have to live with for a long time (potentially several years) - we ultimately went with a “central port” and it worked out well.

After the operation, we got Chase back home in time for his favorite lunch (homemade burritos with lots of good stuff inside). Carol makes the best kind and he almost ate two big ones, which was a good sign of his recovery. Meanwhile we were quickly packing and getting ready to head to Houston in order to meet the medical team at the Burzynski Institute (Tue morn) and MD Anderson (Wed morn). We were so fortunate that TMW was able to reschedule the plane around our needs because it would’ve been horrendous trying to get a groggy kid (just coming off anesthesia) through an airport terminal, security and to his gate, not to mention all the personal stuff we wanted to bring for him, knowing that we’ll like be here for a couple of weeks (assuming we get comfortable with the treatment plan and kick it off). In addition, it turned out that major storms were rolling past Houston, which would’ve made commercial travel pretty hairy. And with the current status of Northwest (a mechanic strike and on the brink of bankruptcy), who knows what our luck would’ve been with their flight to Houston. Thanks so much Tom Wheeler! – we love you man! We couldn’t have covered so many bases in such a short period of time without this convenience.

In addition, as we were looking into accommodations for extended stays in the Houston area, we discovered that most hotels, residence inns, suits, etc were taken by people trying to evacuate outlying areas, including Louisiana, due to the hurricane. We were very lucky to get a furnished apartment, through one of the leads provided by the Clinic after several attempts (another small miracle along our way). It worked out perfectly - we got 2 bedroom furnished apartment, and my sister Angie (Sammut) Keaton was able to drive over from San Antonio to meet us and help out for a few days. We’ll need the extra space as we’re hoping to have other visitors during his treatment (some of Chase’s cousins are hoping to come down later in the week).

All in all, another successful day on the long journey to Chase’s full recovery!! We’re trying to keep our humor about us, although Chase reminds us once in a while that it hurts when he laughs. Tonight he came to give us hugs before going to bed and stopped a foot away and said, “remember, don’t squeeze too hard, my chest hurts”… we laughed it off, although we really wanted to burst into tears… Anther funny anecdote is that Chase is becoming quite the negotiator – Carol started off by telling him he’ll get a quarter for cooperating (taking his meds, agreeing to get poked by another needle, etc.). However, the price keeps going up – the last time I caught the conversation (during the flight down today), he had it up to $2 for swallowing his meds. Then as he was getting ready to go to sleep, I tried to get him to take some kind of “healthy juice” (which really doesn’t taste good), and he wouldn’t go for the buck – I wasn’t about to get into a bidding war, so I let it go for now but told him it’ll be waiting for him in the morning. The only consolation to this negotiation exercise is that Carol has him convinced that he’s saving up for college…

That’s all for now - thanks again for all the prayers and support! We’re getting through all of the ups and downs as well as we could hope! We’re really excited about taking the next steps and getting Chase quickly down the path to full recovery.

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

P.S. One more acknowledgment is to Kathleen Bell (a fellow parent from the brain tumor group) has helped to set up this website and the corresponding yahoo group. You didn’t think we were that computer literate did you?!?

Sunday, August 28, 2005

Home Again

We returned home again yesterday, once again compliments of TMW Enterprises (thanks Tom Wheeler!). Chase ate a great breakfast at IHOP and is continuing to regain his strength since the surgery. He rested during the flight back, while Barbara watched a movie on his portable DVD player - all in all, what you'd expect from 5 and 6 yr olds.

We were glad to have a successful conclusion to our week in Memphis, with Chase's biopsy / "de-bulking" seeming to have caused no side effects. The staff at St. Jude's was very helpful and ready / willing to provide whatever guidance and resources they can to support Chase; however, they understand our desire to locate more progressive treatment plans and they provided referals to Duke and Mass Gen (for Proton Beam).

By the time we left Memphis, we had received confirmation that Chase would qualify for entry directly in the trial that we were interested in at the Burzynski Institute in Houston. They gave us an appointment for this coming Tuesday morning to go over the details of the program, and if we choose to proceed, he can begin treatments right away. In order to prepare for this, we were able to schedule a procedure at our local hospital (Beaumont) for Monday morning to install a port / shunt in his chest for the treatments to be administered. The therapy developed by Dr. Burzynski (anti-neoplastons) is rather non-conventional but seems to have a lot of promise for this exact type of condition with minimal side-effects (no long-term physical deficits).

While we are in Houston, we will also be meeting with MD Andereson to review Chase's file and condition and evaluate any treatment programs that they can suggest (although they are likely to be "conventional" - radiation with chemo). We are not closing the door to these kind of options, but we're leaving them as a last resort, if the non-invasive approaches don't work.

So here we go again, ready to embark upon another exciting week where we will be traveling and meeting more doctors who have extensive experience with this type of condition and hoping to finally kick-off a treatment program that will enable Chase to get on with his recovery.

We will also be hearing back from the Nutritional Expert with a detailed report / plan for us to manage Chase's diet over the course of his treatment program. In addition, we received an e-mail back from the Homeopathic Doctor in India confirming his recommended treatment for Chase's condition - we plan to review this with the Nutritionist to ensure that it doesn't conflict with the medication he'll receive during the trial, as well as her recommended diet.

We felt the power of everyone's prayers over the weekend as we attended our service as well. We know that we couldn't be handling this stressful situation nearly as well as we have been able to manage it without all the support and prayers we have received. Chase's rapid recovery from the surgery is certainly miraculous already and we believe God is allowing his plan to unfold perfectly for Chase. Everything fell right in place by the end of the week for the next phase in his treatment plan to begin immediately this week - we are truly blessed.

Thanks again for all your support and prayers! They mean the world to us right now.


John & Carol