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.

Capillaries
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.

Aug. It is AUGUST

I can't believe I haven't posted since July 6th!

Let's dive right in.  All is well.  So well.   Gary is back, and back BIG.  Muscles are not 100 but 92%.  How I calculate that I have no idea.  But stepping up stairs, gaining confidence that he never had.  Between weekly pulses, and physical therapy, we are doing great.  Our last infusion was July 23  It was originally scheduled for July 18.  We had gone on a camping trip.  My most amazing sister and her incredible husband drove their trailer up to a campground they have a membership too.  Parked it for us to let us camp.  We had planned for the week but took what we could get.  Gary's infusion was mid week, so when planning it I thought , no biggie, we will just pop over to the hospital, do a quick overnight and be back.  I often do that.  I think you could safely say it is a fault of mine.  The words are so much easier.  I often do the same thing at the beginning of my long runs.  "It's only 17 miles."   The day came.  The campground had a pool, hot tub, and putt putt golf.  How could I look into those eyes and say we have to go.  I called and asked to reschedule.  They agreed.  I am sure I messed schedules up.  I am sure I irritated a few.  But three years of this,  and someone needed a much deserved PASS.

So that is what we did.  I am so glad we did too.  Our reservation did not go through the week.  We ended up having to come home early because the camp ground was out of space.

Our infusion was Monday the 23rd.  We went to clinic at 11am.  We were there for nearly 2 hours.  I just love our doctor.  Well, she is the fellow on rotation but I think she is beyond amazing.  She listens to every detail.  Every view.  So that is what took so long.  She explained to me that the official THURSDAY meeting  they talked about Gary for awhile.  Gary only has two more cytoxan treatments in his series of seven.  They talked about which direction to go in next.  He can't stay on cytoxan forever.  I want grand babies some day after all so lets no push it.  Can't stay on IV steroids forever either.  Or can we?   I don't know.   I love the talk of remission, which we didn't discuss because I feel we are a long way from hit.  Steroids are his bandaid.  While I will take it and rejoice in it, I still feel we have a journey to get there.   I am grateful the road is bumpy.  We took a xray to see if the calcium is entering his joints.  It looks as if there is a donut shape around his the joint.   No problems with movement.  The xrays were inconclusive.  It seemed the calcium was staying of the joint but they couldn't see the joint itself because there was so much calcium.   I like what his deposits are doing right now.  They have all reduced in size.  He does have some trouble some calcium in his bottom.  Right at the top of his crack.  It is slowly seeping out.  It itches at most but still.  It does look bruised around some spots.  My opinion is too keep the pamidronate infusions up  monthly.  I think the steroids have a lot to do with the reduction in inflammation, all over his body.  All labs are clear.  They did check for iron in his blood.  It keeps coming back low.  They did a binding iron test thing and it was ok so press on.   

The conclusion of our long conversation was, well, I think she was just seeking my opinion.  She wanted to know what I thought.  Did I think we have ever truly gotten Gary's JDM under control.  Turned off?  Have we ever been in a place where we thought maybe just maybe we hit the pathway.

No.  No we haven't.  Muscles.  Yes, we know that one.  There is another however,  another pathway that we have yet to block.  

The latest is there is a whole new line up of medication.  They are stirring away from TNF blockers.  Hmmm.  We shall see : )

No limp.  Skin, Okish.  Calcium, Goodish.  Energy, over the top.  Thank you steroids.