Wednesday, September 29, 2010

Infusion # ? Lost Count long time ago

Things went smoothly yesterday.  A Child Life Specialist met us in the infusion center to help with Gary getting the IV.  Gary had the usual same amount of anxiety.  It has been mounting in intensity however.  This time, Gary tried to get himself to "throw up" during the IV start.  He looked very red.  It's like he is working on turning himself inside out.  They missed the vein the first time.  But a nurse that has done countless IV starts on him came to the rescue and put that needle in a gusher.  The Child Life Specialist helped with Gary's anxiety prior to the procedure.  She distracted him with giving a Teddy Bear an IV.  We have done that before but I didn't mind return to old trix.  Making the actual procedure go without tears, fears, and anxiety is just impossible.  I don't think at this point it will come without tears.  She told me its a natural reaction. I completely understand that.  It is not completely natural or normal for him to have a disease that requires this treatment.  Sitting in the infusion clinic all day, I get to hear the "natural reactions" to different procedures.  Getting around them is just impossible.  Trying to make it easier is what I am after.  Since I am seeking, than I shall find?
View 092800123...jpg in slide show

We are waiting to hear if Gary is therapeutic with the dose his new medicine he started.  His levels as far as JDM are still holding.  He still has a elevated AST level of 51.  Calcinosis, still there but staying put.  I try not to sit hear and hold my breathe waiting for the next flare.  I'd rather go running.   Run those feeling out.  

Tuesday, September 21, 2010

Thank you for your input

Thank you to Summer and Kalee for giving me your advice.  I didn't much feedback else where but that is ok. I would have the same reaction.  "I'm suppose to tell you what your kid should take? No thanks!".

Summer, thank you for your recommendation on the Enbrel injections.  You had me change my mind for awhile there.  I know we all can only give advice or at least tell others what we have been through.  I humbly thank you for stepping up and helping me decide.  So glad I have you.  I will pray the insurance company helps you get going on the Rituxan.  Keeps us posted.

I read up on it and did a little research.  I think however, I am going to go with Tacrolimus.  It is what my gut says to do.  It is a little hard to start him on new medicine because he has since recovered from his flare.  He seems to feeling good and his energy is back.  However, the calcinosis is increasing  what seems like by the day.  A few have increased in size.  It also seems that if you can't feel it in a particular spot, keep going and you'll run into.  The inside thigh one's are the largest so far.  The folds of his arms seem to be getting a little on the active side.  They do not bother him.  He has no pain unless you grab him a certain way.  It's the whole, "you don't look sick" thing that really comes into play.  I have called in to order the prescription.  Looks like this Friday we will be starting it.  They want to take a baseline for labs.  We will have to start to labs again, it sounds, like on more than a monthly basis.

Our next infusion for IVIG is Sept 28th.  That's not far off :

star-anim.gif twinkling stars image by GeminiFerrieMake-A-Wish Foundation star-anim.gif twinkling stars image by GeminiFerrie

Base Sunshine Castle Package IV
Gary was granted a wish months ago.  It has been an ongoing project.  He wished for a Rainbow Play System.  I wished it was protected from the sun so he could play without worry. Our wish was granted.  Just before we decided break ground someone utter the word permit.   Eeeeekkkkkksss.  Scccreeeacccchhhhhh was more like.  It brought everything to a halt .  We now need permits to install this awesome sun cover that is being donated by a company in Ohio.  I mentioned it on Facebook a little.  So we have to cover the cost of the permits.  Make A Wish made it crystal clear from the beginning that they cannot be involved in any way with building permits.  Not even on a monetary level.   We are working on it.  We asked the city we lived in if they would considered waiving the fee's given the nature of the situation.  They kindly considered it, but informed us they did not have the authority to waive it.  But God is good.  It will work out ; )!

Like the great Jimmy the Cricket sings,

"When you wish upon a star, makes no difference who you are, anything your hearts desire will come to you. If your heart is in your dreams, no request is to extreme."
Through his eyes!  He is excited for his wish.
Gary in the background as the architect goes over the plans
for the sun protected cover.


star-anim.gif twinkling stars image by GeminiFerriestar-anim.gif twinkling stars image by GeminiFerriestar-anim.gif twinkling stars image by GeminiFerrie



Raising Awareness

[myositis.jpg]
Happy National Myositis Day
What can you do I National Myositis Day?  Hmmm?  I thought
about it and I think informing one person who
did not know about it previously to this 
day is a good way to celebrate.
Raise Awareness.

Friday, September 17, 2010

NEW Med's/Clinic Review

Think I have a trend going on now of  "reviewing" events in my life.   We had our clinic appointment yesterday.  Aunt Amy and Uncle Ray drove all the way to the hospital to be with us during our appointment.  We met a new fellow, which is a new doctor to rheumatology.  I looked at our nurse checking us in and said raising one eyebrow with a wicked smile, "Really,  do send him in.  I will get him broken in."  The other nurse mouth to me, "fresh meat".   He was younger, and very nice.  I really don't want to tear them apart.  I had let them know about the mistaken "flu diagnosis" that was discussed.  I told him not to apologize.  I was use to it.  Gary was very uncooperative as usual.  I did mention that I am become concerned about Gary's psychological profile.  I wasn't kidding about that in my last post.  I like to joke about things or make light of them to cope but this one keeps tapping me on my shoulder.  He needs help dealing with this.  He is getting older.  He isn't a baby anymore.  He is a little boy.  The fact that his growth and development will involve a large part of his treatment and disease needs to be addressed.  Well not a large part but at least effect his growth and development.  Dr. E came in and did a complete check over like she always does.  She was very careful to make sure she felt all the calcinosis.  I am sure to note any changes for the next appointment.  She wanted to see how deep and shallow they were.  His strength tested of good.  His cuticles looked good.  His labs holding.  But yet the process of the disease is still there.  So we are adding a new medicine.  Lucky you, you can help me decide which one.    One is called Etanercept and the other Tacrolimus.   Gary is doing good, but only because of drugs.  We have graduated from the traditional way of treating Juvenile Dermatomyositis is what the doctor said.  Do I get a T-shirt for that?  What about Gary?  Let's have a party.   I'll take a 13 mile run followed by a vanilla vodka coke and a soak in the hot tub I don't have. Snort weeeep.
 pills.jpg pillz image by bobpaclover7
So with no further delay, I present our choices.




Brand name Enbrel

Injection, so it will be a new shot in addition to methotrexate.
It's a TNF blocker, Tumor Necrosis Factor Blocking Agent which means blah blah blah blah and blah. LOL  sorry. ( I just finish up with Make A Wish foundation with the architect.  Geometry makes turns my brain OFF.)  Anyway, back to Etanercept.  Comes with all the fun warnings like lymphoma and other cancers.  Risk of serious infections. Ect. ect. ect.   Ummm.  It reduces inflammation.  Usually used for arthritis.   You can click on the link to see what you can make of the internet.

Tacrolimus

Brand name Prograf, protopic
Taken by mouth.
Immunosuppressant Agent, calcineurin Inhibitor.  Which means, you guessed it, blah blah blah blah and blllaaahhh.  Same warnings, risk of cancer, infections.  Warning says do not give to children under 2.   Gary is three but still.   It is used to prevent organ rejection after transplants.  Again, you can click on the word and it will link you to what the internet has to say about it.

At this point I am leaning towards the tacrolimus.  The other is geared toward arthritis.  Gary is not having trouble with that aspect of the dermatomyositis.  It's more the inflammation of his skin not his joints.  But then again its inflammation that is indeed the problem.  This one takes several weeks for see effects.  The other takes several months.

Which would you give your three year old?  This is in addition.  We are not replacing any.  One of these will be added.  The doctor took cyclosporine off the table because it messes with blood pressure.  We already have blood pressure issues.  She also does not want to give him pamidronate because he is to young.  It remodels the bones. Taking calcium from other places and putting it in the bones.   Blah.

So leave me comment, tell me what you think.  It is ultimately my decision so please do not be offended if I don't pick the one medicine you think I should give him or you know what I mean.

Thursday, September 16, 2010

Clinic Day

Today is our check-in with the doctors after the whole ER visit.  I called on Monday to see what his labs were that we had done on Friday.  A nurse called me back and gave me labs I don't tend to look at.  I am always on the look out for muscle enzyme labs which indicates disease activity.  I wanted to let them know he was still a little sluggish but nothing that required us to be seen sooner.   She noted some platelet levels and sed rate.  Something about Gary having been sick or had the flu.  I shook my head at that because he had not been sick.  I was under the impression he had a flare from his disease.  I don't waste my energy or breath clearing things up sometimes because it doesn't matter.  It only matters to the doctors.  I wonder if that is a bad attitude on my part.  Maybe I really should take the time to explain to her that the official diagnosis of that visit was a JDM flare.    But then again, like I said, I see the doctors today.  I even am going to have the pictures I post on my blog developed and bring them with me today.  I want to show our main rheumatologist where the calcinosis are at.  Gary does have a few that have tripled in size since last week.  The inside of his legs and groin area seem to be riddled with them.  I found a new one on his elbow.  Calcinosis is common on the joints.  They don't bother him unless you grab him to pick him up a certain way.  I am fine.  As long as they stay where they are at.  If they inflame like they did last week, well off to the corner I go to rock back and forth in a fetile position.  Gary overall has been better the past couple days.  His energy came up a little bit.  Now we are back to having trouble sleeping again though.  My children have never been great sleepers so through a bunch of meds on top of that!  GO TO SLEEP KID     I feel better now.

I Have Other Children


I know all's I ever talk about is my the chosen one.  So a little blip/update on the other two.  McGuire is doing pretty good.  He started middle school this year.  School is a big challenge for us.  When I am trying not to fret over Gary, thoughts of McGuire will enter my head.  McGuire is working hard to find his way.  He gets confused easily.  He seems to have trouble grasping things, but works very hard.  I need to get up to his school to make sure no one is just scooting him along.  The whole campaign with "not letting kids fall thru the cracks" seems to have dissolved with the new economic conditions of our times.  I will not let him be passed up or passed on.  Just because my kid doesn't learn or operate like all the other cookie cutter kids, doesn't mean he should have to step off the trail.  Why don't you get him into tutoring?  Sure, let me go pick money on my money tree to pay for that.  Why don't you take him to the doctor to get help?  Speech Therapist, Neurological Evaluation done at Mary Bridge, and consults with our pediatrician and endless meetings with the school for extra help.  We are going to get this handled.  Its like running a marathon.  One foot in front of the other.    My princess, Elexis, seems to be doing very well.  She is the typical girl, emotional, craves attention.  They are both so pretty and tender.  I am trying really hard not to screw them up, LOL.  It's funny, sometimes I feel guilty for taking the time to run.  A lot of Mom's, even me, say my kids come first.  They are number one.  Well, God is obviously first. But I think its a fine balance.  You have to be your best too.   Spin those plates of my very blessed life.

Tuesday, September 14, 2010

CURE JM CONCERT 2010 REVIEW





What a great weekend. It was blue skies for the drive down. We took our smaller car for better gas mileage. Sure its like sticking a cat, a dog, and a bird together in the back seat, but we cope. Our beautiful daughter brought along her little recorder (flute). So at one point they were fighting with some back ground flute music. My husband and I exchanged glances. The eyes they say, "I love you" in a more sarcastic way mind you. Like, "yay, look what we made." At the same time it triggers joy and happiness. This is my family. Anyway, on with the journey. We met up with Uncle Ray and Aunt Amy for the drive down. Everything went smoothly. We got checked into our hotel then proceeded directly to the concert. We meeted and greeted. We immediately ran into Grandma Bradford and Uncle Bill. I loved seeing my family there. Next we found the Smedley's. We are big fans! Big fans of the whole Smedley Clan. I couldn't wait to lay eyes on Aunt Heather and Mason's Mom Kristen. We were all very excited to get our new Cure JM shirts. I planned on pink but they were out. Gary seemed a little run down. But his three year old energy doesn't let him be down.

Blake Lewis was amazing. We really enjoyed his performance.  As well as the others.  I wish we would have been able to participate in the dinner the night before, but we were beyond our budget as it was.  It was such a fun incredible weekend.  I wish I could go back and do it again.  My only disappointment was that it wasn't long enough.



We met a JDM family that was in Austin.  I don't think we got to meet in Austin but we did at the concert.  I could have talked to them for hours!  I would have if I was allowed.  We had to head back over to the hotel to get the kids set up with dinner so we could go to the drink for the cure.

Me and my brother-in-law!
Grandma Bradford came with us which was sooo much fun.  We had some appetizers and beer.  It was so much fun.
My mother-in-law and sister
Cure JM Hero, Mason Smedley.  Mason seemed uncomfortable until he caught the eyes of his parents in the crowd who were standing right behind me.  You could feel Mason melt with relief.  It was magical.  Truly amazing parents.

Friday, September 10, 2010

Wednesday, September 8, 2010

Monday, September 6, 2010

JACK MORRIS AND HIS LONG WALK HOME

This is my interview with Jack Morris. Jack is due to return home this Friday. Please drop by his blog and comment. Tell him Gary sent you over. PS. Don't forget to mute my music first (on right)

Friday, September 3, 2010

UPDATE

Thank you to everyone for your nice comments.  Thank you Summer for giving us a blog hug by posting about Gary.  Your the best.  You are important to me!

Gary is doing better.  The IV steroids made him a new boy.  As yesterday when on, he was less and less cranky.  He really enjoys playing with the neighbor children.  I would say children in general but that is not true.  There is something about our neighbor kids he is so very attached too.  They were over for ice cream last night watching that show where contestants complete obstacle courses.  The discomfort of the calcinosis has subsided thanks to the steroids.  Honestly, you would never know that kid was in the hospital for two days.   Thank you to everyone again for your well wishes.  We go in for labs in about a week.

LABOR DAY
Labor day weekend is here!  We are hoping to get away for a overnight camping trip with the family.  I am excited to get away and spend time with the kids.  It rattles our family when kids come home and Mom's not there for two days with no discussion.  In the middle of adjusting to school, I think we all feel not sad but just worn.  Hopefully this weekend will get everything back in line again.  I was so pooped yesterday, my insides just quiver'd!  Running was passed on to say the least.  May be just what I need though.  Hopefully I can get some running in this weekend.

JACK MORRIS and THE LONG WALK HOME


This is my friend Jack.  I was contacted by Tracie Jenkins, one of his team members.  They asked for me to share my experiences at Seattle Children's Hospital.  Jack is walking home from Jacksonville, FL.  He is raising money for Children's.  Jack is nearly at end of his journey.  He emailed me while we were at the hospital.  He was in Leavenworth, WA.  His walk is due to end September 10th.  I am very honor and excited to be able to witness all this.  It is so inspiring.   Jack is featuring 10 families on his blog.  He is 
highlighting their experiences.  Gary will be featured as well.   When I returned his email, I told him I was proud of him.  You knew you could be completely proud of a stranger.  Here is his blog:  CLICK HERE
I invite you to follow his journey along with me.  He is also taking donations that go to Children's.  Pretty incredible stuff!

WE WON

Sorry I have delayed this announcement but CURE JM won the Pepsi Refresh 250,000 GRANT. Thank you  to all my family and friends for putting up with my constant bugging for VOTES.  But it worked.  It was most definitely odd when I cast my final votes for Cure JM and then suddenly headed off to the emergency room.  My sister brought her lap top down so we could keep track.  We didn't get it set up until late in the evening.  So sleeping on the hospital couch, with an achy back and my baby hooked up to and IV, I found out we won.  Aahhhhh.  It was relieving.

CURE JM CONCERT
www.blakelewisofficial.com

The Cure JM Concert in Hillsboro, OR is coming up September 11th.  I am so excited.  I emailed Mason's Mom, our JDM buddy, while at the hospital to say I would be so disappointed if we have to miss it.  But with things looking better we will indeed be making the trip down.  Anyone and everyone is invited.  The Saases, Pritchows, and Luddington's are all going.  Email me at roberika2@msn.com if you want to join us.  It will be amazing!  Last years was great.  Featured this year, Blake Lewis from American Idol.  Returning is Jessica Lerner and Savannah Outen.    You can buy tickets on line. CLICK HERE

Here is the OREGON Crew who represents!

Thursday, September 2, 2010

HOME

We are home.  We came home last night at about ten.  Sooner than expected.  I believe the nurse did not properly calculate the IVIG rate.  So they dumped it in him in a matter of 4 hours.  It usually takes more like six.  I could be wrong.  My judgement is off due to fatigue.   I started to feel like a three year old myself.  Nurses have such hard jobs.  Dealing with irrational families LOL.  After Gary started feeling better, they infused him with methopred (steroid).  He did not tolerate this well.  He was screaming and twisting.  We turned it off to give him some more ibuprofen thru his IV.  They had run the usual benadryl with it but the steroid did not get started until almost an hour later.  They couldn't find a pump ect,.  He was hypersensitive to everything.  Words, food, light, dark, noise, quiet, ME.   Thank you Lord for blessing me with sisters and their husbands.  Uncle Ray and Aunt Amy sat there with us for two days.  Bringing presents and junk food.  Uncle Bill and Auntie Lyssa stayed back and took care of the kids as always.  They are always so willing.  Things just get taken care of without saying.  They are all amazing.  I do not take them for granted.  Uncle Bill even dappled in some hair styling the morning of school.  Uncle Ray was dedicated to playing jets, legos, and cars to keep him distracted from his discomfort.  It worked well.  Gary was done with Mom.  If I talked wrong it sent him into rage.  No offense taken little man.  Whatever you need to do.  Children's was very quiet this time around.  Which is nice.  We had a corner suite to ourselves.  It just makes a world of difference.

Official Diagnosis
His official diagnosis was a JDM flare.  The calcinosis that was coming thru caused his body to react in a violent way.  Here is a story to share for you that proves God orchestrates our lives.  We originally went into the ER because I thought he had a broken collar bone.  Within an hour he spiked a fever and became violently ill in the ER.  God knew where I needed to be and what was coming. He led us to the best place to be.  So beautiful.  Good plan God.

MEDICALLY SPEAKING
So the plan is to stop his lansoprozal which is what they give when you are on steroid.  It prevents any damage or ulcers from forming in the the tummy.  Gary is back up to 1ml everyday now which is still so little.  So much for The Great Taper.  : (  But I think they want to keep rocken it ever so gently.  Since the lansoprozal is going to be stopped, they are hoping he will absorb the medicine better.  A lot alarms of course go off in my head.  One of the signature complications of a JDM patient is they don't absorb the medicine because of blood vessel damage in the lining of there stomach.  It will all be a matter of finding the right medicine cocktail.  Can I put my pom-pom's down now?  They are getting heavy.  Over the next couple weeks the doctors will meet and decide which medications we are going to try.   In the running: Cyclosporin 
They are talking about replacing methotrexate I think.  Sure!  Why not.  I mean its fun to try all the malignant warning medications.  NOT.  Depending on what the calcinosis does, they may start something to help with that.  They will also consider Pamidronate .  


TO GARY WHEN YOUR AN ADULT
Dear Gary,
If you are reading this as a adult, I wanted to say sorry.  I am sorry if you are having any trouble with side effects of these medications.  I need you to know that I was only trying to keep you healthy.  It was very hard to see you has a little guy going thru all this.  If you battle continues in your adult life, know that I was only trying to do what was best for you.  I was only trying to get you to this point in your life now.  I have no doubt you have  an incredible amount of courage just with everything you have been thru at age 2 and 3.  A lot people have said it is good that you are so young because you won't remember.  I know in my heart at this point you will no doubt remember.  So if any of these medicines cause future problems, hit them head on son.  We have come to far.  I love you.  Be the best you can be.
Love, 
MOM


PICTURES
I wanted to post more pictures from whatever day it was.  I don't even know what day it is.  These are from Tuesday.  I don't post these for attention.  I don't post these for sympathy.  I don't post these to expose my child or exploit him.  I post these for the families that are going thru similar experiences.  Especially with JDM.  I find myself wanting to know what others have been thru.  What medicines they used.  So I feel it is my duty to help other families by having the information of our experience available to them.
Calcinosis on chest area.
Calcinosis around his hip and groin area causing discomfort.

Calcinosis coming in on top of ribs and hip area.



All the redness has now subsided with the help of IV steroids, and IV ibuprofen.  His discomfort is also much much better.  Now we are dealing with the CRAZIES from the steroids.  Screaming, extreme sensitivity.  

ANGEL
I decided to feature my angels once a week.  Anyone who supports our family and is there blessing us.  There are so many so I am going to pick one and feature them!  So today's is my angel, Michelle Pritchow.   Michelle constantly supports us and our cause.  She blessed us with a visit in the hospital.  Her presence is soothing and delightful.  I am so lucky to have her as a friend.  She brought Gary a book and color crayons and other goodies.  She brought ME a running magazine!  A girl magazine!  I was very happy.  I had a lot of fun reading running facts.  She even drew a picture of Sponge Bob while Gary had his IV done.  Drawing it upside down.  LOL  Michelle has three children of her own that she does a wonderful job of taking care of.  So when a busy Mom takes time out and comes all the way down to Seattle to see my child.  Well, then.  That's pretty special.  It means that much more.  So thank you my friend.  I could go on and on with her blessings.  Offering to go get groceries ect,. ect,. ect,.  Not to mention always plugging CURE JM and raising awareness.  So thank you my friend.
Michelle Pritchow

I know its hard to believe but I have more to talk about LOL.

To be continued............