Saturday, May 12, 2018

2018 May, 9 years, and DAMNIT

I have not even told him yet.   We just not celebrate 9 years of dealing with this and where are we?    Well, we have accomplished the following:  Learned his juvenile dermatomyositis is severe and aggressive.  We have learned it will drop you in an instant and break your heart.  

I arrived home Friday night.  I didn’t have the greatest day.   So much so I was even crying.   A lot.   My second line beeped and beeped and beeped and beeped.   I blew my nose, and told my Bff I would call her back because some is in trouble!  I was being sarcastic at the time.   Only to answer to my sons doctor.  I gained my composure and pretended I was just fine.  Of course at that time, my mental chalkboard had just been wiped clean.   On to bigger and things that REALLY matter to cry about.   I cordially said hello.   She greeted me back.  We went through the typical small talk.  Then came the gritty.    “I’m so sorry.  Your suspicions were correct.   Gary is developing brand new calcium on his neck.”      If I could express my devastation properly, this screen would suddenly go black.   Oh man.   I mean I believed so hard he would come off prednisone just fine,  he has not and will not.   The NIH was right.    He will never.   I hate! Hate hattte!    I feel like my life is one big trick.     But I could give a shit about what I feel.   It’s him.   I’m so sorry my son.  I feel like years are being shaven off his life.  I just get to watch it happen.  

His doctor suggested we run another medical he has had in the past.   I declined.   I said if there is any chance of him qualifying for a transplant, why would we risk damaging his liver further.  I declined a tour of the cancer care alliance where could possibly be done.    I was wrong.   I should have went to the appointment so they could have seen the disfigurement his disease causes.   My doctor tried to hint to me but flat out said it, “take him so they can see him”.   Deep breath 😪😰😭😢

Monday, January 1, 2018

2017 in Review

Well here we are :)!  It's 2018 and not once did I post in 2017.  I am no longer a stay at home Mom so things change with time and priority.  I have also learned to deal with Gary's medical condition in different ways at this point in my life.  So lets so over some stats........Gary is now 10 years old.  This spring will he his 9th Juvenile Dermatomyositis anniversary.  The last couple years have been better and better.  Gary is in 3rd grade.  He is doing pretty good.  Academically he is behind in school but makes daily progress.   Medication wise we go every two weeks to Seattle Children's.  Gary still has his port in his chest that they placed 6 years ago.   He gets IVIG and Tocimizilab every two weeks.  We are working still to get off steroids.  Currently down to 3mg.  Soon we will supplement with a different type of steroid as he comes off.   We looked into putting Gary on a growth hormone this year to get him caught up.  But the doctor said he was confident that his growth would catch up.  Gary's dermatomyositis has definitely left behind war wounds.  The calcium deposits have improved but them going away by themselves, surgically removed, and he has out grown a few.    The liver damage the medications caused we continue to keep an eye on.  We are vigilant for flares, although I admit my focus is a bit more limited.  So I have to be careful of that.  Keep up the good work, Gary!