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