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?!?
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