Friday, December 30, 2011

2011 in Review

I was attempting to think back to the year.  I have said it before and I will say it again.  I am so glad to have my blog.  Helps with ones memory.  So year two of JDM.  

We had limps and bumps.  
We had x-rays and scopes. 
We had crossing toes and I don't knows.
We had labs that went up and labs galore.
We saw a dentist and giggled with gas.
We fought flares and getting up stairs.
We lowered meds and upped them again.
We had Make A Wish!!!!!!!!!!!!!!!!!!!!
We are ending 2011 with lots of pokes and I will spare you with thats no joke?
Think its time I end this.........stopping.

All in all I think Gary is starting to respond to the Rituxan again nicely.  The heliotrope on one eye is fading.  The other heliotrope rash on his other eye is taking its time but hopefully by his next infusion it will be even that much better.  I think Gary's JDM doesn't want to be messed with for awhile.  I think we need to keep him in a inactive disease state for awhile.  Every time we think we got it.  His disease is just not that way.  The next time we try to lower anything, I will have to take into account just how long its been and what happened last time.  

My pediatrician said something to me at the beginning of this.  It has stuck with me to this day.  At the time I didn't believe him or didn't want too.  "I don't think we have seen the worst of this".   I pray he still doesn't think that. 

Here are some of my favorite and not favorite pictures from 2011:

After the last Rituxan infusion.  Poster for miserable.

Tuesday, December 27, 2011

Is it working?

Merry Christmas and Happy New Year!  It always comes with, I can hardly believe another year is in the books.  Life is going by so fast.

Gary is doing pretty good.  We had our IVIG infusion one week away from the last dose of Rituxan.  Aunt Amy was asked to come this time so she did.  We told Auntie it would only be a half day.  It turned into a full day.  : ( Sorry Auntie.  This infusion was a little rough on Gary.  I think the back to back infusion made him less tolerable.  For whatever strange reason, he could taste it.  Every time they flushed his IV.  Every time they started a new medicine, he could taste it.  He would wince, grab his tongue and say yuckie!

I can only recall a few infusions where Gary did not fall asleep.  We have another one.  At the end of the infusion, he started having a reaction.  The first sign was irritable.  He was laying in the chair.  The nurse bent around him pinching his leg.  That set him off.  He tried to cry but went into complaining he was hot.  We didn't think much of it.  He said it again.  I took his blankets away and still didn't think much of it.  The IV came out we were ready to walk out when he complained again and began to scream.  I ripped his shirt off to cool him down.  His skin was red and blotchy.  Great.  The IV was already out.  Got to be kidding me.
They called rheumatology right away.  The gave him a big syringe full of benadryl.  His blood pressure was high and so was his heart rate.  The nurse came in and said they needed us to stay another hour.

The benadryl worked like a charm.  The next few days that followed were tough.  He was sick for 4 or 5 days with headaches and diarrhea.

As Christmas rolled around his color had not gotten any better.

He is better though now.  I was very close to having his levels checked.  But I remember the past where is color gets really awful.  They have never treated his color so I didn't take him in.

Tomorrow we have a dentist appointment.  Next infusion is Jan. 11.

Monday, December 12, 2011

Rituxan Part 2

Awww the love of infusion.
This infusion we did solo. Just me and my little boo.
We checked in at 4:30pm.  They were running late.  No problemo.  I mean I did ask what is the delay.  I have to.  My four year old knows what is in store for him (IV) so to prolong that is not the at the top of my list.  I instantly asked a nurse what was the delay.  It was more of a reflex.  Nothing as changed much.  Capillaries look  a little better.  Labs good.  Strength, clinically good.  Home.   Hmmmm.  I question it a little.  Like suddenly he cannot get up on my bed no matter how hard he tries.  No, not an attention seeking thing.  He cannot get up on the bed, pulling himself with the cover, stepping on the side rails.  Nothing.  Leaves him frustrated.  Leaves me frustrated.  I am left to wonder is it normal for a four year old not to be able to pull himself up on the bed??  He was able to do that before.

It was fine he we were delayed.  A Wednesday night.  Daddy went home to be with the kids.  They are great about setting the doctors up.  I was told twice it would be 30 minutes.  It was only 15.   Clever way to set my emotions up.  Really I didn't mind.  We went over the usual.  I do agree he is doing better.  His gums are a bit better, skin is less purple.  I decided this time to pack up a couple of things we don't usually bring.  The distraction technique came in to play nicely.  So nicely, I think Gary was actually excited to stay the night.  I packed our Wii up and a gingerbread house.  We were put in the same room as two weeks ago.  Luckily our roommate had not checked in yet.  He was still coming out of surgery so I quickly jumped over to the window.  In my opinion, that is the prime spot! A view of the cranky.  Yes!  Ahhhh the little things.  No fair to our roommate but guess what?  He was 18 years old and was having a really rough time coming off the anesethic.  He vomited repeatly.  The. Entire. Night.  I would like to run a poll.  Crying baby or listening to someone puke all night.  Hmmmm.  Tough one.  Anyway, the IV team passed by the room.  Gary knows the sound of the cart.  He knows their voices.  I was working hard to get the Wii going.  He froze and looked at me with fear.  "Is da pokie ladies!!!!!!".  I told him not to worry. Our nurse was getting ready to do the numbing cream. Her experience was lacking but she was attentive.  I had also packed another little surprise for him.  New Lightening McQueen Pajama's!  So before we hit the showers, the IV team wanted to take a look at his veins and mark with a black sharpie marker were they wanted the numbing cream put.  We have never done that before but OK.  So that is what we did.  She lightly applied the cream.  In all our stays they have always caked it on thick.  I asked her to put on more.  She said sure.  By the time the IV time came back around it was someone we had never met.  I have to say when I see someone at Children's hospital on staff that deal with us, that I don't recognized, I always point that out.  "Hi, I haven't met you before?  Are you new?"  My confidence I think is a bit arrogant.  Its not like I own the place. 
So the whole marking the vein with a sharpie was funny.  The ink smeared in the numbing cream.  It was a big grey mess.  But luckily MJ, our friendly IV team friend hit a great vein in the crick of his wrist.  He cried but not as much as the shot.

The Shot
Nurses in training was the name of the game this fine night.  She was being supervised by a senior nurse.  Sometimes that gets a little confusing.  Two people running things.  One person missing things while the other reminds them and tells them how to do things.  There are so many details that come with that job.  On to the subject of the shot that hurt Gary and my world.  With the new nurse armed with an enbrel shot, she desparately asked me if I wanted to give the shot.  Her manbee pambee look.  Her lack of confidence.  It drove me to say, "sure, I'll give him the shot."   I wish I could take it back.  I don't know what went wrong.  I have gotten our shots at home down to no tears.  Whiney, a little, but no pain or he copes with that pain.  Gary was in store for more that one poke that night so I wanted to knock it out, get it done.  Can I go back in time and step in and say do it later?  Please.   Please. Please!!!!!!!!!!  It was the worst.  First they did not hand me any  alcohol swabs to clean his skin.  I was ready to give the shot on the top of his thigh.  They had to scramble to find one.  I mean, hello, your nurses.  Why would you hand it to me without following what you would do.  As I got the alcohol swab done, she handed it to me.  It did not look like the one at home.  It first looked like one of the pen kind that you shoot the trigger.  They were like, what are talking about?  Ok so.  Pause here.  On a professional level, if a mother shows fear, lack of knowledge or lack of know how, as a nurse I would step in and say, wait up here.  Lets go over this.  But no.  They just let me look like an idiot.  Once she revealed the needle I wasted no time.  At this point, he has seen it.  I want the fear and agony of it to go by just as fast as the shot does.  He screamed.  He turned bright red.  He rolled.  He screamed some more.  What had I done?  Too deep?  Too hard?  Too fast?  Too slow?  Was the needle larger than normal?  Was that even the right medication?!!!!  They showed no concern, well they asked if he was alright.  I instantly said, "he never reacts that way?"  They scurried out of the room.   He was due for another lab to check tacrolimus levels.  I wasn't doing that one!!!!!! Still not over this.  I really wish I know what I did wrong.  I do know that I will never ever be the one to give a shot at the hospital.  The nurses should always do it.  But then again, if they had given it and he reacted that way, I would have been just as if not more upset.    He recovered fine.  Lots of sighs and sniffs.  And my heart is broken.  It still is.  Never knew I could break my own heart over an action. 

1:00AM What is the hold up?

Gary dozed off about midnight.  It was from the benadryl they had ran.  They had come in to tell me his methoprednisone was on the floor ready to go.  He was snoozing so I decided to rent a movie that I had been so excited to rent all week just for this night.  I got about an hour into it and decided to pause to see how he was doing.  Too my frustration, nothing was running in his IV except saline.  A nurses assistant came in to take vitals.  I asked her with spite, "why are doing vitals?!"  She had a thick russian accent.  I could not understand what she was saying.  Something about they are getting ready to run the first med.  Soon the nurses, thing 1 and thing 2, came in with his methopred.  I asked what was the delay?  I said it has been over an hour since the benadryl was ran.  The methopred should go right after that.  Not a long stretch of time for it to wear off.  It will wear off in middle of the Rituxan.  Then we have to dose him again.  Then he gets more that he needs which delays things again.  I felt sorry for them.  They said it got caught up in pharmacy. 

We did not check out the next day until 430pm.  Which,  whatever, it is what it is.  I was exhausted as always.  I really had to be on my toes this time.  They tried to give him a TB test.  I said no.  They tried to give me a drug to give him that was for a bacteria infection.  Gary does not have a bacteria infection.  They did start him on magnesium and a protein tablet.  Today was the first day I was able to get him to keep it down.  He has been throwing it up.  But hopefully I found the way today.  Mixing his multi-vitamin the magnesium and chocolate sryup.  We will see.

We have IVIG again this Wednesday.  Then a break from the pokes!    As I explained to the doctor whom we hadn't seen in awhile this dose of Rituxan will be the true test if Rituxan in fact is working on his jdm.  He has had lots of steroid pulses as pre-meds to the medications.  Once those wear off, we will see if the Rituxan is doing its job.  Last dose they also increased almost all his medications.  We did not know if it was from the increase of the dose of Rituxan that got him out of that flare six months ago.

My Favorite
"It is a little dishearting the b-cells that Rituxan deplete have never come back."  Implied why run it if it kills something thats not there.  Then whats working?  Whats not?  Love doctors.
  Gary and I got endearing messages like, "we miss you guys." 

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.

Sunday, November 13, 2011

November Infusion: FLARE

Last month I was worried about the taper of steroids.  But time and time again, there is not much I can do about it until it comes to past.  Because even I admit, "what if I am wrong".  But walking into the hospital on Thursday I was so nervous.  I was nervous because I knew I had to get my Mom on and make sure things got done the right way.

Somehow we scored a bed this time in the infusion center which was nice!  It is up near the nurses station so the all the nurses step in and help.  We had like 4 nurses in our room when we were getting checked in.  I found my main nurse and explained I was about to be a pain in the butt.  I asked her if she could page rheumatology before they started any medications.  They are always compliant for the most  part.  She dropped a bomb shell right away telling me our rheumatologist was not in town.  8 O  What?  No.   "I talked to someone.  He said he was in a meeting and would come when he could."  Well. well. well.  I knew exactly who that was.  I protested.  I even called him a harmless name.  Our nurse desperately scrambled trying to get another doctor to come.  It was too late.  There he was.  It really was no big deal.  He was with our fellow who saw Gary last month.  I told our doctor it was nice to see him.  It was too.  Just wanted my rheumatologist.  But settle for two fellows.   Here is what I have been seeing:

Heliotrope rash, and facial swelling.  Some calcinosis had penetrated the skin on the back of his knee.  It is showing signs and getting larger on his backside.  They agreed.  I don't why I felt relief and panic at the same time.  

We had a clinic appointment set up for 215.  We checked in at 1015.  There was no way that was happen.  So they accommodated and came to us. In walked our doctor who was out of town.  I told her I was having a shcitt fit she wasn't there.   Yes.  Yes I did say that.  I was just so relieved she was there!  She examined him and said, "yes, he is flaring."   Changes in capillaries in his fingers with so many other signs.  We are going backup on our steroid which is only 1/2 ml but enough to make a difference.  We are going to run rituxan again at the end of the week.  Gary's labs came back fine.  But he is still flaring.  
The trip home was the pits.  Awful.  Traffic made our trip into a 2 1/2 hour ride.  All's he wanted to do is lay down.  He cried the whole way because he just wanted to sleep and couldn't.  Side effects from IVIG seem to really be increasing.  He nears vomiting and is so miserable.  I feel terrible.  I wish I could have pulled off, got a hotel, and tucked him in for the night.  He would have loved that too.  Would have been a good distraction.  Getting him to our bed, not his, was on the menu though.  I was close to just making him a bed on the back seat.  Belt him in somehow.  A new item to bring, pillows!  My poor little bunny.  I hate revisiting this.  We need to stop this in its tracks or he is going to get full blown sick from it. 

I still cry. 

He recovered but has been tired.  He was running with his brother and had to stop and grabbed his legs saying owe.  Ugh.

Thursday, October 13, 2011

October Infusion

These keep sneaking up me on quickly!  I can't believe it was already a month.  I have been storing our appointments on my calender, instead of committing them to memory.  At 2am I rolled over and for whatever reason decided to tap on my calendar to see look at the what time we were scheduled only to find we were schedule to be in Bellevue.  So glad I looked and didn't hop over the floating bridge to go to Seattle.

I was late.  Again.  The car wouldn't start.  You would think this would bring us to arguing and major stress but, what can you do.  Fix it if you can and go.  Thankfully it was the car my husband was driving to work.  We jumped it but back to square one of why it drained it self after not being used for a couple days.  Just put a new alternator in it.  Boo.

After getting it jumped, I ran back in the house to put dinner in the crock pot.  I so terribly hate coming home from an infusion ,  tired and hungry and emotionally spent, only to have to make dinner.  I hate dinner.  : )  But am thankful to have it?

So 15 minutes late but I just got a "no big deal".  I apologized profusely but they just looked at me saying,"its an infusion.  Your here forever".

The Taper Update
We have been rocking 1/2 ml to 1ml of steroid.  First three days I noticed he was a little tired.  I wanted to wait to see if labs were going to match what I was seeing.  They did come back up from last month.  I called and left a message from rheumatology.  I told them I was concerned he wasn't tolerating the taper.  They called me back.  Our doctor was not concerned.  His labs are still with in normal range.  Just higher.  As always I love the wait and see.  I told the nurse that an instinct level I wasn't feeling to great.  I told them I would however, keep a close eye on him.

Every couple months we have trouble with IV.  It was one of those months.  We had the same nurse as last month.  This was the one nurse who had success with his IV and celebrated.  This month we weren't so lucky.  After two trys, they paged an anesthesiologist.  He got it.  He was very aggressive.  Very official.  Scary looking because he was in surgery gear.  Gary surprisingly was very compliant with him.  He was use to having his patient laying.  He had blood every where and dropped the flush on the floor.  He was so surprised.  He went on and on about how his mind expected there to be a table to rest the flush on.  Lots of crying but Justin Bieber was on the TV.  Gary watched Never Say Never.  He hardly noticed he was getting an IV until the needle hit the skin.

Poor buddy had trouble falling asleep because the chair.  We had him turn around to sleep on it backwards.  The way home was hard.  He cried and cried because his head hurt.  He said he needed to throw up.  Hitting traffic is no fun when he feels like that.  As always his feeling turned to anger.  One minute I am his hero the next and I quote, "a big a*s*Ho**".  Well. Well. Well.  That's a new symptom. Do you wash those words out?

I treated myself.  I went and got a tall pumpkin spice latte from Starbucks.  The nurse said, "you look like you could use some coffee."  The infusion center was empty so I felt confident slipping out to the lobby to get one.  Is it pathetic I still smile about a latte I had yesterday?

I fear I feeling a little sorry for myself though.  Not a lot just a little.  And why should I feel sorry for me, its my son I need to feel sorry for.  But get over it and stand strong I say.  I am not alone in the battle.  But even my husband forgets to ask.  I told him his labs were up.  I was waiting to hear from the doctors.  He forgot to ask about the results of that call.  In all fairness,  I saw him for thirty seconds though.  Even though we have an infusion, cheer leading practice still happens.  I had to drop Gary off to him, and off running again.

Made with an app. Pic of Gary in middle during yesterdays infusion.

*Thank you to for the comments on previous posts!  I hope one day Gary will say, remember when that tasted funny.

Friday, September 30, 2011


Thank you to our friends, The Morgan Family, for donating to Cure JM.  Our Scentsy Representative, Debbie Evans, held a party with Estela.  Estela donated the commissions to Cure JM.  A donation of a guests choice, Tina McGann, chose Cure JM.   THANK YOU THANK YOU THANK YOU.  I love huge hearts!

If you need anything from Scentsy, here is a link to buy from ORDER HERE

Thank you Debbie, Tina, and Estela.   Love your heart!

heart hand

Clinic Check in Sept. 2011

Our clinic check-in went pretty good.  Doctors were running behind.  We were greeted by a new fellow who only knew of Gary by his name.  She didn't introduce herself.  She just began chatting.  I have to admit I wasn't in the mood to chat it up with a new doctor.  But I do like to hear myself talk.  Especially about a subject a know extensively.  As I updated her on the latest and greatest, she responded with, "I know you have struggled to get this under control."    It struck me I am don't favor the speaking with the fellows first.  I often tell them things, then forget to repeat them to our Doctor when she comes in.  Yesterday seemed rushed and chaotic.  I think it was because they were running behind, I needed to get back to work, and Gary was in no mood.  The fellow began the strength test.  As Dr. E entered she took over with the tricks she had established with him. He still was not cooperating which is frustrating.  I get distracted by his behavior, rather then going over the important things.  There were a few spots on his skin that I discussed with her.  She wasn't concerned.  The fellow repeated a few times about how difficult his case was and is.  We talked about his hoarse voice.  I think we are satisfied with trying to get it to resolve itself.  I guess.  Capillaries on his fingers,  a few fingers are almost normal.  I few are far from it.  I asked the doctor if that is common.  She said  yes.  One finger ok, the next not.  Don't bother with the why.  Strength is near 100%.  Gary was saying ouch here and there with his leg strength tests.  I told them I don't think that is a true pain.  Gary was giving there chains a yank.

Our doctor wasn't as excited as I was.  Pleased yes, but seemed cautious.  I am glad for this.  I appreciate her conservative approach.  Our first wean started last month.  The wean off was her.  Instead of every 4 weeks, we are not checking in every six weeks.  Our new taper is the small amount of steroid we are on.  We are going to rock that between 1/2 ml and 1 ml for the next six weeks.  In two weeks we have IVIG and lab checks.  She will also be checking T-Cells.  If they are back, we will run Rituxan again.   I felt like her head was full yesterday.  She seemed distracted and very busy.  She always expresses her confidence in me.  How they trust me and how in tune I am with him.  I appreciate that, but there is an immense fear.

So here we go with continuing the great taper.  We tried this taper last year.  It didn't last long.  Do things feel different this time.  I am not sure.  I think they do.  With methotrexate, cellcept, tacrolimus, enbrel, ivig, and rituxan and plaquenal on our side, just maybe.

Protected from JDM.  I make him wear this everywhere.  Protects him from injury and germs.  Just kidding.

Thursday, September 22, 2011


There is no title to this because its not about Gary's disease.  Well, it is, and it isn't.  We are having a hard time right now.  Surrounded by blessings.  Definitely.  But fighting.  I am sure like a lot people are right now.  I feel like my hands are tied though.  We are scratching to hang.  Hang on to our house.  Struggling to even eat sometimes.  If it weren't for my family, I shamefully admit I am not sure I would be able to put a healthy meal on the dinner table.  My husband works hard.  But with all the price increases, it starting to hit us hard. We still are on financial aid at the hospital.  Blessing.  But even gas to get there has been a part of a strategic planning.  *Note to all children:  Be nice to your parents.  VERY NICE. Because even at 37, you depend on them.  I struggle with myself alll the time.  We can't afford to live in this house anymore.  I am torn and heartbroken at the thought of not being able to bring my baby home to his beloved house.  His beloved playset.  The neighbors.  So easy right.  I get a full time job.  That is what we need.  We need double our income to make everything ok.  Poisonous dilemma number two.  I get a full time job.  What do I do with my baby with no immune system.  Drop him in a day care?  I feel like that would be dropping him in a war torn germ country.  It makes me feel neglectful, bad, and sad.  I want to rise above this.  There is a way. He knows our needs.  I just wish I wasn't so very human.  Car broke down.  Ipod broke down.  And broke my 45 gallon fish tank.   Perspective is my friend right now.

Friday, September 16, 2011

"I'm not sick"

"I feel fine Mom.  I don wanna go to get pokies.  Tell dem Mom.  Tell dem I all done now."
"Da evereebodee get pokies Mom?"
"I all done with this. I not sick"

Someone is getting older.  I see retaliation in my future.  I sure hope the disease is done because Gary has inside information that his 2 and 3 year old mind could not grasp.  The good news is his labs were beautiful yesterday.  No signs of anything, well besides calcinosis and few cuticles that look grubby.  We have had a few things I was keeping an eye on.  A few spots in his arm pits were looking vasculitis.  But hasn't done anything so I felt better.  Calcium deposits have not increased, no new ones, so that is good.  All in all I love the trend we are on.  I am really looking forward to our clinic appointment in two weeks.  Which med gets lowered first? : D

I so look forward to the day when he doesn't have to take any of this.

Our infusion went great.  Nice and smooth.  I gave him his sedation.  No vomiting, just heavy tears for the IV start.  I gave the nurse the honor of starting his IV.  I told her he is not a hard poke anymore.  He once was because of the steroids but he rarely gets poked more than once.  She did it.  IV team has been doing it every time for 2 plus years.  I heard her celebrating at her desk with the other nurses that she did it!  Giggles.  She did a great job too.   A little to much tape but she put a big IV in since we were going to be there all day.

Gary had the whole boat this time.  Methoprednisone, Pamidronate, IVIG, Methotrexate, Enbrel, benadryl, tylenol.  It made for a long ten hours in the infusion clinic.  As much as he is started to grasp the concept of all this, he still doesn't.  He sleeps through the infusion, not by his choice.  Once he wakes up, the game has started. Instead of saying, "I don't feel good",  he just screams.  Cries and screams about everything.  The ride home was like a violent sea for him.  I constantly was instructed to roll the windows up and down.  He tried to sleep.  He tried to stay awake.  When we arrived home, he just wanted to play.  I think instinct drives him to do the normal thing.  He just wants to not acknowledge however it is he is feeling by playing.  But even a glimmer of stimulus like throwing the ball wrong to him and he goes into hysterics.  I try to get him to come inside lay down.  Makes things worse.  He doesn't care if the sun is doing down.  He needs to play.  My friend Summer gets the medicines that Gary gets.  A doctor recently told her the medication she gets "isn't that bad".   I beg to differ.  I want to slap in one in the face with my "differ".  My son is not this child after getting these drugs.  He is a much kinder, fun-loving boy.  He goes away when the medications that keep him healthy enter his vein.  He screams and hurls insults, in the same sentence breaks, then screams he sorry and he loves us under sobbing tears, then back to the threats and pain.  So yes, these medicines may not be the worst, but they are that bad.

A friend wrote me how great Gary looks.  I couldn't agree more : ).  We have been here before, when things seem to turn a corner.  He gets this angelic appearance.   Still with all the stuff he is on, preschool will have to be at home.  We did have a run to the pediatrician 2 weeks ago because he was having trouble going number one.  All was clear though.  Just irritation.

*Other Children.  School is in session.  They fell back into there routine nicely.  Gary misses them.  Our family eats dinner after 830pm almost every night.  Trying to keep the siblings active and heathly while juggling all the rest like running (which I haven't done in 3 days now), house keeping, working, cheer leading, not paying bills (lol), and tracking school progress, I feel like just staring at the wall for awhile.   Like that song says, "I don't feel like doing anything".  Oh but putting on my chemical suit and cleaning the bathrooms in this house.  Yucky.

Saturday, August 20, 2011

Goldfish Vomit

No my fish did not throw up on me.  But in attempt to pull out all stops to avoid and IV start, Gary did.  He has come close in the past but this time he went for it.  All the way baby.  lol.  Our IV team wasn't the usual people, in fact, I had never seen them before.  I looked up and didn't even say hi just, "where's Theresa?".  They acted like she didn't exsist.  I got a hint of 'your rude' attitude from them so I backed off immediately.  They lacked knowledge of where everything was so I was having pillow cases throw at me with each heave.  Nothing like cupping your hands together the catch the warm, wonderous contents of your childs stomach.  Good thing this is not a scratch and sniff blog,  cuz BLEH !  I think the IV nurses even got a little woozie.  They got him in one poke but it was a in and out of the same site.  They leave the catheter in but pull back on the needle to try and find the vein. O-and he was eating goldfish crackers before sending back up to my lap, reason for the catchy title.

I love first times for everything.  For the first time I did not bring him a change of clothes.  For the first time he walked out in his underwear.  LOL.   I convinced him since the old underroo's were boxer style, that they were not in fact underwear, but shorts.  Thank goodness it worked.

We have been using lorazapan which is a little pill that makes you feel like you care just a little less.  We have been using it for IV insertion for about six month plus.  Works good.  This time we were in clinic before the infusion center.  Clinic was running a little behind so what do you suppose wore off?  He was especially cooperative for his clinic appointment though.

Our doctor liked what she saw.  Excellent strength.  Skin looks good.  Nail folds still dilated, but looking better.  I have issues with that but I know how to fix it.  Just need to stomp my feet a little.  They have a camera so they can photograph his nails.  Keep a photo diary of what his capillaries look like.  If not, I really might just buy one myself.  Anyway,  she agreed she thought the calcium looked better.  She said the calcium is going to do its own thing and there isn't much we can do about it.  That is confusing to me because I thought the last time they ran Rituxan was because of the calcium.  Maybe that is when you are getting new ones?  Contradiction.  But I am not going to make issue of it.  I think its a if this is happening with disease activity then we can try and stop it.  Shruggs.

Labs looked good.  Have one little elevated level but by only one point so no biggie.  The one thing she told me to keep an eye on was his thumb which was slammed in a truck last month.  The nail has trauma so she wants me to keep a look out for infection.  He also has a spot in his mouth she wanted me to watch.   Infection is a big thing for us or any immune suppressed patient.

Preschool season.......Hmmmmm.  Home school preschool?

Tuesday, August 9, 2011

Enbrel Shot Number 4

Gary takes his 4th shot this week.  Initial review of how its going.  Very well.  I am so excited for clinic next week.  I am not sure if it works that fast but I have noticed the calcium on the backs of his legs have decreased.  He seems to be feeling pretty good.  His skin looks great.  We finally kicked the thrush.  The lanzoprosal we put him on doesn't seem to be helping with the hoarse voice but he couldn't handle the full 10ml.  I am going to work up to it before I officially say its not helping.  The shots are getting better too.  He is one tough guy.  But don't tell him that.  It makes him mad.  I am so happy to be back down to 1ml steroids.  Change in sleep, appetite, tantrums.  Thank goodness.  He is getting so big.  I admit I am cautiously optimistic because Rituxan had this effect of him.  It was like a honeymoon phase.  I even remember posting something about pom poms and I was so excited that this was it, the miracle drug.  It didn't turn out to be it but thats ok.  Maybe enbrel is it.

We had a wonderful weekend at the CURE JM Concert in Hillsboro.