Sunday, November 20, 2011

Rituxan Infusion

Thank you to everyone in my life that rearrange their life to help our family accomodate the infusion.  And not thank you to everyone who didn't.  LOL.  That's alright.  The world does not stop spinning because of a child's medical condition.  But I don't know.  If I got an email that said, "my son is going into Children's Hospital for a unexpected chemotherapy infusion, could you help me reschedule?", I vow to do everything possible to help you.  Thank you to my baby sister for always saving me and being so willing.

I was offered to do our Rituxan infusion in the infusion center.  Hmmm.  I love my own bed.  Sleeping is so nice. But having a flash back to last week, I had to insist on an overnight infusion.  I don't care what it cost.  I don't care who is annoyed.  I don't care what needs to be rearranged.  It has to be this way for the good of my little man.  And what a little man he is becoming.  He is slowly but surely maturing.  He is able to pick out the good parts.  He is able to pick out the bad parts.  I was impressed with this.  He knew he was going to be getting an IV, but looked forward to picking out a toy from the prize box.  (If you have ever donated to Children's Hospital in Seattle, my little boy is the one you bring an joy to!  A distraction that pulls him through having to have a large needle rammed into the back of his hand over and over again for the past two years.)

We first stopped off in clinic.  Clinic is always fun.  We have a really great fellow (intern) who did a great job examining him.  She tested him thoroughly for strength.  We chit chatted. Since we had just seen her six days ago not a lot had changed.  She did mention she heard that I had called on Friday.  Yes I did.  I was having a little panic session because usually after a pulse of steroids and IVIG,  he is pretty white.  An angelic look comes over him.  The flare he is in however didn't let this happen.  He was redder than ever which made me so nervous.  It took me right back to the beginning.  I was just fearful he was going to get sicker with JDM.  The nurse talked me down.  Told me who was on call for the weekend.  I was certain at the time he was going to need another pulse. I inquired about the weekend.  Just wanted to let them know that I hated all of it and we may need to come back.  But breathing and embracing a calm is something mothers have to do.  I was close to pulling the emergency cord, (metaphorically speaking) but talking myself down, once again, my son has a disease.

I inquired about a bit information that our main rheumatologist mentioned last week.  When giving IVIG and Rituxan at the same time, IVIG neutralizes Rituxan.  Come again? Because the first 4 doses of Rituxan were all given with IVIG.  I didn't want to discuss it at the time because my brain was still processing this.  I didn't want to face.  I came home and posted it on the JM Support Board.  I felt a little guilty afterwards.  It struck me, what if I didn't properly gather all the facts.  I decided to wait to get the full explantion.  Enter the senior rheumatologist.  She explained that currently it is a theory.  That this has not been proven, but if you think about how IVIG works and how Rituxan works it would make sense that the two cancel each other out. IVIG clings to antibodies to rid of them so they will stop going after his body.  Rituxan is a antibody that clings to cells that cause inflammation.  Hmmm.  I hope I got that right.  Don't quote me.  Anyway, she further explained it is about a style.  They have kids that with diseases that are treated with same medication who need to be treated quickly.  They do not hesitate to give them together.  They have seen Rituxan work but still its not know if it is doing its full job when giving with the IVIG.  I kind of apologize to my JM Mommies but then again I don't because its not all together true or false.

Gary's calcium deposits have been on the move.  I am a little baffled by they ones that are on the backs of his knees.  They decreased in size but now have started giving him trouble on his skin.  Like they are trying to exit.  They have increased in size around his elbows as well.  A new one has come in on the bottom side of his fore arm along the bone.  It feels kind of big.  The calcium on his bum is also bigger and showing signs of vascular eruption.  I made that phrase up but in my terms, little purplish dots and rough skin around the calcium site.    I did get some good pictures.   Sadly, they are big enough to show up on camera now.
I added the little blue arrows to point at some of the calcium deposits.

Calcinosis on the outside of his throat.

Waiting for orders, to wait for the IV team, to wait to get an IV.  Anxiety.

Inflamed cuticles, burst capillaries, swollen fingers.

I would give almost anything he wanted during an infusion.  Any time.  I draw the line at cigarettes and beer.  But chocolate.  Yes.  I hate how benadryl makes him sleep with his eyes open. Creepy.

Effects of Rituxan.  No, just testing out next years Halloween costume.

Gary's sweet nurse putting the puppy dog stickers on his chest.  I love the smiles they shared.


  1. Oh Erika, my sweet, beautiful, best momma in the world heart aches and breaks for Gary and for you...for I know what it is like to go through this. Not exactly like ya'll are going through it but I know to much what it is like and this post has me in tears.

    I hope you don't mind but I will share on what they told me about Rituxan and IVIG. See Rituxan didn't work for me but JHU wouldn't run them together for they do cancel each other out or they can. On severe cases though they will run them together to see if they will work more together than not.

    I am so so so so sorry he has the calcium deposits and goultron papules and broken capalaries back. I have the papules and capalaries back as well. They are bringing an in home team in to do my IVIG infusion really slowly being it caused aseptic menengitis on me last time and do it over 5 days...they are talking with insurance now so after body is toxic from steroids so they want me to rest and tough out the pain as much as I can before they pulse me...they think it will do more harm then good on me right now.

    Girl I totally get the trying to get help part...when I had to have an emergency infusion last mth it was like pulling teeth to get some people to help and others dropped everything... I laughed when you said no thank you to some...totally how I felt. It's amazing who you know you can really count on and who you can't when you need them most.

    Little Gary with his candy is presh...I too sleep with my eyes half open on all those meds the hubs says it freaks him out and he comes in and checks me like every fifteen minutes lol...ok so how sweet of the nurse with the stickers...where can we donate to for toys for the box? Hey can you pretty please give me your addy...I wanna send Gary a pressie...from kelcee and would mean a lot to us...let me know...I know it wierds some people out to give addys out but I'm no wierdo lol...

    Are ya'll still at the hospital? Hope you get to come home soon. Sending all of you up in you

  2. Like Summer, my heart just aches for all this you are going through. Poor Gary, being so sick and all. It sure does stink when these so called professionals won't help accommodate, have they no compassion?

    Praying Gary feels better soon and a medicine found that will put this nasty disease into remission and gone for good!