Tuesday, September 13, 2016

Quite The Day

Today was Cancer Center day meaning we needed to be out the door by 7:15 in order to make it for Joshy's 9:00 appointment.  I woke up feeling less than the best, but he had to go so we went.  We got a slightly late start because, well I don't move the fastest when I don't feel well.

On the drive there, Joshy discovered the window button... Down went his window letting the rain in and the cool dehumidifier air out - silly boy!   So glad I have the master window controls and a lock button!!

At the hospital things went well, but slow. It still breaks my heart to see little bitty ones there.  Little ones just shouldn't get Cancer!  BTW - September is childhood cancer month, please, please, please register to be a bone marrow donor!   

Labs were drawn and results finally came...


Joshy's platelets were NORMAL!  Not just squeaking into normal, but very normal!  His white cells were normal as well and His red cells & hemoglobin were just a hair below normal!   His labs have not looked this good in nearly 5 years!  Even his liver functions were only a little high and his potassium level held well in the normal range even thought we had weaned him off the potassium blocker medicine 2 weeks ago.  


The doctor was thrilled.  He even mentioned a word, I'm almost afraid to type... なおしった, which roughly translates cured!   With this good news came another tiny step in the immune suppression drug weaning.  This continues to be a very delicate process of lowering the dose 0.1ml (2x/day) every 2-3 months.  From tonight Joshy is down to 0.5ml.  At this rate, he will be almost finished by next year at this time!!   The danger of dropping the dose too fast is that his antibodies could start attacking itself again and we will be back at square one - not something we want to do, so we go s.l.o.w!!

There is still the need to be extra careful, especially during the winter, that Joshy does not get sick.  Illness will complicate matters, not to mention slow down the immune suppression weaning.  Thankfully, Joshy has only had 2 hospitalizations so far this year a while blood counts fell, they didn't drop into the danger, need a transfusion zone like they did the winter before.  This is a good sign, but we are still on doctors orders to avoid colds.

An added gift also came today - we don't have to go for a check up next month!  We are now on an every two month check up schedule.   Joshy still has monthly check ups at the local hospital where his blood is monitored, but a 5 minute drive vs an hour and a half... Woohoo!!!  This also saves us about $50 in gas and highway tolls and roughly a whole day.  I think I am almost as excited about this as the lab results.

Then so as to not have a boring drive home, Joshy added to his skill set... he opened his door, well attempted to O_o  Thankfully, because the car was moving the automatic door simply beeped & loosened the catch rather than fully opening!!  Joshy seemed rather pleased with himself, but was quite a typical teen when I stopped & tried to get a picture of his mischievously grinning face.


This evening I am feeling much better emotionally even though physically I'm still not up to par.  I have narrowed it down though...  The wet, rainy weather is making the air heavy and my asthma is not liking it.  Pass my inhaler and I'll feel better as long as I take  life a little bit easy until the current weather passes.  LORD willing I can avoid catching a cold!

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