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*

1 comment:

  1. Oh my sweet Erika, I have missed you so much and think and pray for you and Gary and the fam every single day! Girl it seems Gary and I seem to crash around the same time. Did you read my blog about our emergency JHU trip? You should my meds are turning upside down to saying bye to this hello to that this working that not, this causing side effect that causing rash, well you know ugggg! I do the same thing when I taper steroids my labs look kinda normal but when you look at me Im a hot mess and steroids are so toxic on me right now its causing short term memory loss on me and my platelets and stuff are lower because of all the water retention.

    I have to say bye to Methatrexate we are scared cause I am getting so strong and now its attacked my liver to much so I feel ya with the Cytoxin. I was gonna tell you that Orencia I have heard is an awesome drug. It works really well and has minimal side effects. Since they really don't have meds for JM/DM besides steroids they have to use RA and different meds. I will be back on Enbrel but I also have RA. Did they test Gary for it? Sometimes with Dm you can get mixed auto-immune disease where they cross and you can have full blown DM or Jm like Gary and I do and also RA like I do and I have characteristics of Lupus. Gary and I are rare birds but we are special and are gonna keep swimming and beat this! It should be our turn now! I feel you on GOD helping us through all the bad parts. I am glad you are taking your awesomesauce Playground with you! OMG your gonna need two trucks to haul it!! My heart breaks you have to endure so much and so does Gary! I love that picture of our little super hero, love ya Super momma,I have been in hospital all day with infusions yucko! Glad the port is doing well for us both yay for that huh no more tons of sticky ladies!

    love you