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