Cycle #2 Update

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Quick Update:

On Friday, Josh took the last of his chemo pills for Round 2 of his maintenance chemo and thankfully he appears to be perking up a bit both emotionally and physically.  The past couple of weeks have certainly been rough.  One would think that the week in which he was taking the chemo pills would be the worst for him and then he’d feel better as the month wore on.  But for Josh that is not the case, at least not for Cycle #1.

Starting on August 18th, he was sick at least once a day, exhausted and generally feeling icky.  He missed a few therapy appointments as well because he felt awful and sleepy.  He wasn’t eating too much either.  Much of the problem stemmed from the fact that because he has been on Prozac he has to use Benadryl to combat his nausea.  It works well, but it knocks him out which isn’t always the best thing.  Because of this the doctor’s have had us use it as more of a “reactive” treatment when he’s not on chemo. Which means we don’t give it to him unless he actively gets sick.  During the midst of his worst days he had a scheduled appointment with his pediatrician and she decided it was time  to try an experiment. So we dosed him with Benadryl every 6 hours for 2 days, if other than being sleepy he began to feel better than it was probably time to wean him off of the Prozac so that he could have a anti nausea med without the sleepy side effects.  And lo and behold the experiment worked. By the time we went to his clinic appointment in Grand Rapids on the 23rd, he was feeling better, not perfect but more like himself.  So, the two doctors discussed it this past Monday and we are now in the process of getting him off of the Prozac.  This should hopefully be completed in the next week or so, and then we can start him on something like Zofran more regularly as he needs it.  The doctors called his late cycle issues, delayed nausea, not unheard of, but certainly not a common reaction to the drug and because of this they have decided not to increase his Temozolomide dosage for the time being.

As I said on Friday he took his last chemo pills for the cycle and overall the week went pretty well with the first night being the worst. He steadily began to feel better as the week wore on, and apart from being tired he’s overall felt pretty good. So, that’s a plus! He was able to make it to therapy on Friday and put in one of the best session he’s had in quite awhile!  We are a little worried that he’ll start to slide again health wise as it gets toward the end of the cycle, but at least this time we should have something better to combat it and we can be prepared for it too since we’ll know it’s a possibility.

On a fun note, recently we decided to expand our family by adopting two 5 month old kitty brothers, now named Milo and Otis. This is a big step as we haven’t had a cat for years, and now we have two! This is something the kids have been wanting to do for awhile, and thanks to some quality time with kitties at the Karma Kat Cafe in Mt Pleasant, Mom and Dad got on board pretty quickly. These two little ones, apart from waking us up with some late night racing around the house, have brought a lot of joy into our lives. Something we definitely needed.  We all love playing with them, and Josh especially loves trying to get in some  cuddles.  

As Jon mentioned previously, we are also working at trying to get Josh back into school.  It is currently a work in progress as there are a lot of things to consider and details to work out.  We sort of had a plan in place, but the doctor’s and therapists want to reign that back just a bit and start very slow to give him as much opportunities for success as we can.  He tends to get exhausted from even one hour of therapy lately, so we do need to take into consideration how mentally and physically exhausting this endeavor will be for him. This is something Josh has wanted for a very long time, so we want to make sure we are going about this in the best way for him. We’ll keep you all updated as we work out more details!