Friday, August 24, 2012

Aug. 21 Infusion: Cytoxan, Pamidronate, IVIG, Methopred

Well that wasn't what I expected.

It was decided last month that I would decide if Gary needed to come in between monthly infusions. Gary's muscles and everything looked good.  So we kept on trucking.  His strength and energy, tip top.  Until about 1 week before we were due to come in.   Even over the past couple days is when it really came on.   No weakness, but heliotrope rash, capillary changes, and increase in the size of calcium deposits.  

Calcium Deposits
Gary still has a ton of these.  They really have a mind of their own.  There are some that have gotten smaller. There are some that have increased.   He has one in his bottom that has calcium slowing coming out.  It doesn't bother him as far as pain still so that is good.  One in particular that is bothering me just to look at is above his elbow.  Last month they did xrays because the doctor who saw him wanted to see if there was any invading the joint or causing an deterioration of the joint.  The xray didn't show that as far as they could tell.  However, a month later it is still threatening.  Just to look at the spot makes me cringe.  It looks so solid and hot and red.  There is one on the top of his shoulder that has increased in size as well.  He does have one I found in his cheek (in his face).  It hasn't changed.  There is one on his belly that is bigger as well.

I keep an eye on them, oh, everyday.  They looked pretty good all month.  No changes that I could tell.  The doctor asked me how I look at them (like with what).  I told them with just my eye.  She said nodded and said she felt they look worse than last month.

The clinic appointment went pretty much like last month.  We were there for a long time discussing what to do next.  Our main doctor is out of town right now and we be there next week.

The dilemma.  What to do next.  We have one more treatment in the series of cytoxan.  He has been on it for seven months now.

The one question that they keep asking me, what do I think is working or has worked in the past.  So, I have homework to do.  I am going to sit down and right a review.  A review of each medication he has been on since the May 9th, 2009.  They keep asking me what I think has worked.  I really don't know.    But I will.

We are back on Tuesday for Rituxan.   Just in time for Kindergarten.  We are caught up on all immunizations that we can get caught up on.  Emergency Medication Supply is ready.  Classroom Medical Accommodations document, got it.  Giant Bubble, check.  This should be interesting.


Last night he stayed at Aunties.  It is his oasis.  This morning he woke up and is starting to protect his arm with the calcium deposit that is increasing.  This is a new one for us.  It surprises me that we haven't run into this trouble as of yet but just the same here it is.  We suspected the calcium was going to start giving him trouble.  Hopefully it won't it will resolve on its own?  Weep.

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