Friday, December 28, 2012

Battle of the Medications

Our monthly infusion was scheduled for the 26th this month.  It was a little hard packing up and going to the hospital with fresh new toys, and clothes stacked in our bedrooms, waiting for us to play with them.  But it was better then being there Christmas day.

The clinic was quiet has a mouse.  Gary and I sort of enjoyed it.  We were able to report to our doctor that things were fine.  Nothing had changed which means Gary is holding.  Doing well with strength.  Tiny little things that can be dismissed.  Skin rash, looks a little better.  Nail folds, if I can't see any changes then I say thumbs up.  The doctor didn't throw a party over them.  I asked how they look, she shrugged and said the same.  Well, ok.  I am fine with that.  Reviewing quickly, last month we stopped Cytoxan, started Abatacept/Orcenia.  We had tried in November to go from every 7 to every 10 days between steroid infusions.  That failed.  So we went back to every seven with the start up of Orencia.   The doctor decided to tweak a few of his support meds.  We give him ceterzine at night for itching.  She wants us to switch back to benadryl.  She also wanted to switch his tummy protector.  Ranidadine to Omeprazole.  The reason was she wants to one last time target the hoarse voice.  This has all been visited.  This has all been done before but I thought, why not?  I suppose I feel a little bit cynical.  My feelings at first were ambivalent   But with my  sleep deprivation alleviated, I am flipping between well this is dumb and why not.  But in the big picture, meeehhh, fine.  Lets do it. Fine.

We were able to do a CMAS test.   We had one done months ago in the middle of a long, drawn out flare.  His score was 32.  He improved all the way to a 38.  This is out of 52.  But given his age they say that is more out of a  45.  So that is good.

There is one thing that you don't want to see.  Doctors in your hospital room at 8pm, the day after Christmas.  Labs came back surprisingly higher.  His LDH doubled.   700 to 1400.  A few other enzymes are creeping up.  We were scheduled to come back in January for another round of Rituxan.  That was suddenly moved up to Wednesday of next week.

We are upping methotrexate again.

Monday, December 3, 2012

7 to 10 day taper, NOT A GO

Ok.  So, that didn't work.

From every seven to ten has been stamped FAIL.  It failed not by labs but by calcium acting up on his knee and heliotrope rash coming in on his face.  I had been calling the doctors in between the ten days.  Explaining what I was seeing. The doctor I talked to is so awesome.  She listens to my every word.  We were both curious to see what the big wig in charge of Gary's treatment would say.  On Thursday, during his clinic appointment, it didn't take long.  She said we have all been patient with cytoxan.  It was time to move on.   So, cytoxan, its not you, its Gary.  You have just grow apart, again.

Wow, after Thursday/Fridays infusion, am I glad to say good bye to cytoxan.  I didn't realize just how bad the side effects of cytoxan are for Gary.  I guess because he had gets IVIG with it, I thought it was the combo of the two.  Our new flavor for the next couple months, Orencia.  Sounds like a powerful greek goddess or something.  Also known as abatacept.    No idea if I am spelling that correctly.  What I like:  30 minute infusion, not many side effects, well not like cytoxan.  Biologic drug that is given to patients with rheumatoid arthritis.  Stops the destruction of joint damage.  Ok, so right off the bat I think, well Gary doesn't have joint damage per say.  He does have large amounts calcium in his joints.  So if you consider that damage well then yes.  But damage as I understand is erosion of the actual joint.  But at the same time, I can see what we are going for here.  We are looking for his pathway.  Where is Gary's immune system is his juvenile dermatomyositis coming from.   Orencia targets Csomething and another Csomething.  It is a costimulation modulator.  I hate to say it, but I just drooled because in trying to understand that I forgot to close my mouth.    I do know that I don't like the whole RA thing because that is not what is BUT, I do have it in my genes.  A great grandmother with severe RA.  Hands curled in, the whole shaabang.  Another thing I liked about it, he felt so very great coming home.  Usually he is screaming, close to puking, and feels not to great.   So amazing to walk out of there, although rashy, feeling normal.

I hope this Orencia is strong enough to fill cytoxans shoes, however.

They brought back Pamidronate.  They gave him a break from it for a couple months.  But since he still on steroids at a higher dose, pamidronate it is to help prevent bone loss.  I am all for it especially hearing about our friend Aiden who suffered an injury that turned into needing a bone replacement in his ankle.  Like, he needs a donor bone sort of thing.

Failing the every ten is back to every seven.  OH my STARS I thank God we put that port in.  Amazing how He knows what you, and your children will need.

Gary's elbow looks better each day that goes by.  He does have a new trouble spot that we are keeping an eye on.  Well, it is not new but it the calcium is coming out enough now that it is becoming a open wound.  It is not huge but its location is bacteria prone, annoying, and not sure as an adult if I could handle it.  It is high up enough he at least isn't forced to sit on it.

Gary has been able to attend school 31 days out of 51 day as of a few weeks ago.  Naturally he is a little behind.  He should be better with counting, sounds, and using more expressive story telling with his pictures. He has a wonderful teacher who is patient and kind.  We are working with him at home the best we can.  He will get it.  I know he will.

We had a good Thanksgiving this year.  We were so happy to have family visit from the east coast.  Uncle Bill's family from New York.  Gary was especially attached.  He enjoyed just being around The Saas Grandparents so much.  We cannot wait until the next visit.

Our family is enjoying the what looks to be the last set of holidays in our house.  We have been so unbelievably blessed with the situation of having family right next door to us during these past 7 years.  Especially during these past years of Gary's illness.  To be honest, only God knows how we made it financially since Gary's diagnosis.  But we know everything happens for a reason, and He is already taking very good care of us.  We will miss our neighbors so very much, but know they are still nearby.  I don't think there are words to describe just how many wonderful memories we have made with them (my sister and brother-in-law, my niece and nephew).  Not many Aunties get to see there niece and nephew everyday.  Get to see them grow up and be apart of their life.  We are being careful to give all of our children the extra hugs and kisses through this change.  Assuring them it will all be alright.  Telling them that this is apart of life, and nothing stays the same.  Gary especially I think looks to his older siblings for guidance.  I think when we finally walk out that door for the last time, it won't be as easy as I am trying to make it sound, but it will be ok.  *O and just in case anyone is wondering, Gary's Make A Wish is coming with us! We are not leaving it behind*

Now, onto keeping my house clean, like ALL the time for strangers to come walk through it.  I can run twenty six miles,  I can certainly keep a house clean with three children and a dog.  *Gulp*