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
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
posted by John & Carol Sammut at 8:38 PM
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