Friday, December 24, 2010

Merry Christmas

Merry Christmas to everyone.  The Rituxan went good.  Gary didn't seem to have any ill effects from it.  We are scheduled to go back in for our second round on Monday.  Gary will be there overnight.  Hopefully we will get our own room, but most likely not.  Last week it was interesting.  We got check into our room and the patient that was already in there immediately complained.  I was a little shocked.  I told our nurse, who I could see right through and knew right away when that mother popped up out of her bed and headed straight for the nurses station that she was going to protest.  Her daughter was older (13 maybe).  I get it.  Gary is chatty.  But the part that floors me is the less than ideal rooms we have been put into over the past year and half, including being accidentally stuck in with a contagious patient.  I would express my displeasure, and not once did they move us. OK once, it was when we were in with the poor kid who was having loud psychotic hallucinations about The Grinch.  That time I didn't ask they just moved us.  I so badly wanted to ask that Mom what she said.  I also know however, the nurses were not happy with her.  It came up several times because we moved rooms certain things were still back at the original room.    Anytime it was mentioned a certain regard came off of each nurse.  The upside was we did get our own room for awhile.  We also had a window.  Down below our view included the Seattle Fire Department practicing drills on the vacant condo's below.  Yay for the Children's Hospital Expansion!  I pray that no patients will have to share a room again.

Gary is looking pretty good.  I thought earlier in the week that some of his calcinosis was coming through his skin but it ended up being a infected molluscum.    I do think it has calcinosis under it but I was kind of upset there for a few days wondering if this was the start of the pain of these popping through.  The dermatologist has stopped treating the molluscum.  He did recommend trying an online remedy, Molluscum Rx.  It's a little pricey so I am not sure.  One of the things I have started to consider is a gluten intolerance.   I struggle with this because I do.  It will be hard.  But I figured I will talk to the doctors and see what they say.  I guess the reason is because so many times I have been offered advice about Omega Three, fish eyes balls, things of that nature.  It has all been taken with appreciation. However.  This disease is serious.  It can be compared to cancer in my opinion.  My mind is closed to any kind of natural care and things like that.  What if I did and his disease advanced?  What if it didn't work?  There is a person on a support board who is always pushing some kind of product.  He pushes it to the point it is offensive.  Asking us parents 'how dare we not explore other treatment and put the terrible drugs into our childrens bodies when he has found something that works', not a direct quote but it is how he made me feel.  What if we all followed what you were insisting on?  This disease proves that no ones is the same.  Each case is a little bit different.  Each patient responds differently to each medication.  I understand you would want to share what worked for you.  I would too.  But to play upon the fear in parents is crude.  And what every patient did what you are so passionately pushing or "selling".  I can guarantee a lot of children would have disease progression along with all the complications that come with JDM.  I suppose it is all about approach.

I know I need to open my mind more.  I also consider that fact that this isn't my body.  It is his.  It's Gary's.  It may be a little different or maybe something I would try if it were my own.  But Gary would have to live with whatever decision I make for him.  He already does.  What hard way.

We are blessed : )

Merry Christmas to you!

Merry Christmas Summer : )

Monday, December 13, 2010

Rituxan is Running

The back to back stomach bugs aren't a good thing. Obviously.  They had us come in today for a clinic appointment this morning.  It was decided on Friday to go ahead and run Rituxan again.  So we are here overnight getting a Rituxan infusion.   Labs don't always tell the whole story.

Friday, December 10, 2010

Christmas is almost here?

Ring Bearer at Aunt Amy's wedding. 
Wow time is marching.  We had our clinic appointment last Tuesday  and our IVIG infusion the next day.  The clinic appointment went fine.  We are keeping all medicines and doses the same for awhile.  I would describe it as a holding pattern right now.  Just waiting to see what happens.  The doctors and I agree.  Not good enough to stop steroids.  The inflammation is just there still.  Despite really great labs, I can't confidently say were good to go down.  The infusion was a little rough.  This time we tried new things.  We tried a little sedation for the ride in and for getting the IV.  Several reasons this was no good.  He couldn't walk into the infusion center on his own.  He fell of the scale when being weighed.  It did help with the IV start, but he still cried, just cared less.  As soon as they ran the benadryl thru his IV, he was furstrated.  It hit is balance hard.  He was out of it and could not stand up on his own.  It was too much.  Feeling icky and sick like that was not what I had in mind to make the IV go easier.  The next 3 days proved to be difficult as well.  That night he cried and cried and cried.  He was in complete misery over everything.  Uggghhh.  Forget it.  No medicating for IV's.  We will just have to find other means to cope.

The other new thing we tried was the infusion center.  We were booked into a new infusion center which was off campus of Children's Hospital.  We only had to go to Bellevue.  I liked that is was closer, quieter, and new.  I didn't like they didn't serve lunch.  It didn't hit me until we pulled up.  I am more than happy to pack a lunch for next time however.  It was also nice because we had the place to ourselves which meant we almost got the nurses full attention.  They were great.  One of them sat with Gary while I went to get him food for lunch.  They had a movie on demand system which was good, but once we got thru all the movies, he got restless.  Of course he fell asleep at the end.  For the first time in a year and half, after countless infusion, Gary did not wake up while having his IV removed.  Sedation gripped him hard.

LABS
Last month I had asked for them to check his B cell count, to see if those cells responsible for inflammation were coming back yet.  If they were, then Rituxan would be given again.  They had explained it was still to early.  I told them I wanted them checked because there was a overall inflammation I keep noticing in his hands, face, and skin.  They went ahead a checked them this month.  They are indeed back.  So in a few weeks we will be getting another round of mice medicine.  (I call it that because Rituxan has mice dna stuff in it. I know gack) .

TUMMY BUGS
Last year we made it thru the flu season with flying colors.  Nothing.  Gary did not really catch anything.  This year is proving to be different.  I wonder if it is because I am becoming a little more relaxed with his exposure or what.   Nov. 13 he threw up and was sick.  Recovered quickly.  3 days later another round of throwing up hit him.  He once again, recovered quickly.   Dec. 9th (Last night), he began throwing up again with tummy cramps.  That makes a three peat.  Hmmm.  I did have a little run of it a few days after he did last month so I was sure it was a tummy bug.  But 3 times now for him.  The good news is he seems to recover quickly.  Both times he has held down his important medicines so no hospital visits.  I knew yesterday something was up.  He was quiet and complained of a headache.  He did the same thing last month as well.  I few days before, I knew something was wrong or brewing because of his behavior.  Poor little boo boo.

Sunday, November 21, 2010

Snow Tires

I think this is in the running for our Christmas Card.

Tuesday, November 16, 2010

Half

I wanted to pop in on Gary's blog and put an update.  He is doing good.  Remember my color scale I posted couple months ago.  Well lets bring it back.


Excellent
Great
Good
OK
Not Good
Poor

I think I will leave it at where it was back then as well.  I am still not convinced.  I see small signs like all the sudden he will look like he is sun burnt.  November in Washington, that is not possible.  It is what his skin did in the beginning when he was first diagnosed.  I have blogged about this before that yes we have been to not being able to walk very well and not swallowing, to recovery in that aspect.  But in the aspect of being close to finding Gary's magic drug combination,  NO, I am not convinced.  Last week Gary was acting a little off.  It is hard to keep a three year down.  He often has amazing energy so it is very noticeable when that energy diminishes even slightly.  Last week I noticed.  There was something about his face.  It was in his eyes.  It was being asked to be carried.  He was more red than usual.  Saturday it all came to a climax.  On a personal note it was very climatic because my sister's 40th surprise birthday party was happening.  Auntie Amy had said those very words.  "Watch, he is going to be in the hospital during the party".  Saturday, he began throwing up.  He was with Daddy.  I told Daddy to get him home as soon as possible so I could leave the decorating and come evaluate him.  There he was, white and uncomfortable and throwing up.  He also had gotten gum in his hair right before he got sick so he was quite the sight.  He threw up twice while I was home.  I called rheumatology to see what I needed to do.  They told me if he didn't keep his steroid dose down,  he would need to come in for a pulse.   She told me to try sooner than later so we wouldn't need to come in late.  We gave his steroid and he fell aspleep.  Daddy stayed home with him and I went to the party with a cell phone on my hip.  All my family and friends were there.  I was a zombie.  I could barely think.   I love my sister dearly.  We put a lot of work into her party, but I just wanted to be home with him.  But he was sleeping and fine at the point.  I planned to go home when he woke up in case that steroid came back up so we could go and to the ER and get the pulse.    Thank the Lord it stayed down.  He woke up feeling much better.  He started eating and was playing the Wii.  The rheumatologist called on Sunday night to check on him.   I thought that was very nice.  So he has since recovered.  But WOW I was hard to keep my head in the game.  Being around friends and family helped a lot though.  It is nice to be around people who know your worry because they have the same worry.  

He is doing fine now.  But something was brewing last week and it was written all over his face.  What is curious to me is that no one else has gotten sick.  So determining whether or not it was in fact a stomach virus, or his JDM is on my mind.  In September when we did go into the ER and he was throwing up with a fever, it was in fact his JDM.  Although he did not run a fever this time nor did the calcinosis inflame this time, I wonder what it was.  He recovered quickly, just like he did in the hospital in September.  The calcinosis seemed to be backing off but last week I noticed it increase in size in some area's, like on the inside of his arms.  The skin around those particular calcinosis sites look ominous.  But we will see.  I feel like we are at least in control somewhat.  I guess.

Friday, October 29, 2010

CLINIC

I have spent the past two days on 1-405.  Every time you make a turn there was an accident.  It was maddening. I had the urge to go on a family road trip.  A get a way with the family of sorts.  We have all been in a bad mood for some reason.  Yeah, well, my urge was cured over these past two days of sitting in the car with Gary.  Screaming and kicking the back of my seat.  I am not a nice person when returning home.  Everyone runs and hides.  When the door swings open to my house and step through the door, light flashes, and thunder rumbles.

The appointment went fine.  The doctor like the drug combination we are on and has a good feeling about it.  I was honest and said I didn't agree just yet.  Gary had fallen asleep on the way there.  He woke up with hot, itchy, red skin.  His cheeks looked like we had just come in from the sun all day.  His finger were red and inflamed.  I was not happy that he was doing that, but glad the doctor could see it first hand.  In the back of my mind I was expecting to fight off more tapering.  Meaning I was waiting for her to say, lets go down on the steroid again.  But she didn't.  I was able to tell her though that is why I called from the infusion center yesterday to have the Rituxan levels checked.  She said it was much too soon. I figured but needed to cover all the bases. Really, Gary isn't doing bad.  BUT its the same old same old.  I can tell his disease is really angry about all this immune suppression and drugs it is trying to be stopped with.  As always, metaphorically speaking, we are throwing dirt on a big bon fire that refuses to go out.  It's smoking and hot in the middle.   When she asked me what I thought, I grabbed my head and said, "you know, I want to give the Tacrolimus more time.  I don't like the fact he is doing what we did in the beginning.  The sudden onset of red, crazy, itchy skin and swelling."   I continued to explain that I know we have come a long way, but I am not sure.  The only time I was so excited was a couple months ago just after he had his first dose of Rituxan.  That was short lived.  But its hard work.  Only time will tell.  It's a fun thing to sit on.

We chatted about Gary's rage.  She said and I quote, "He has been through a whole LOT. A LOT"  She was sympathetic and suggest we get a punching bag to channel his aggression.  Hmmmm.  I like that.  It's worth a try. Gary, your sisters nose, NO, punching bag, yes.  Don't get me wrong.  I don't mean to paint him out to be a monster.  He is very very sweet.  But he is three and has unpredictable actions occasionally.  But Hey, don't we all.  We also talked about the Child Life Specialist.  We are going to try giving him some Adavant for next months infusion.  It helps him chill and will take the edge off.  I don't want to give him another drug of any kind, but I don't want him to be an axe murdererererer either.   So.
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We then talked more about the calcinosis.  The only thing I can do about that is make sure she feels it and is monitoring it.  I told her it is unnerving for me to feel the calcinosis, especially on the inside of his thigh were it is much bigger and feels bigger and meaner than around his chest and throat.  I maintain as long as it stays where it is.

We had a med change.  One for the itchy skin.  Trying a different one to see if it helps.  My favorite was, "itchy can be caused by anything."  TRUE.  But not AS MUCH when you have JDM.

Hook, Jab, Bob.  Keep fighting!

Wednesday, October 27, 2010

October's Infusion

Wow does that four weeks between infusions go fast.  It started yesterday with the Teddy Bear.  I got a call from the Child Life Specialists letting us know she was going to meet us here.  She asked if we had been doing any medical roll play.  Inserting a fake IV into a teddy bear's hand.  I told her no because I don't want to remind Gary until it is necessary.  There is no reason to bring it up mid month.  I mean I could, we just deal with enough with the medicines.  So yesterday we spent the day putting in Teddy's iv.  Did it make a difference.  Not getting here.  It didn't stop the tears.  I practically had to drag him this morning.  My hands are full so it hard because he likes me to carry him.  He gets in front of me and puts his hands up to stop me from walking in.  He stayed outside.  He wouldn't come in.  I dropped everything I was carrying to go out and get him to bring him in.  Big Aligator tears.  Childrens is usually very quick.  Luckily today they were.  I have been practicing distraction technique with him which seems to work very well right now.  A cool toy, fun bubbles, whatever it takes.  It is amazing how many people step in when the IV is about to be inserted.  This time Gary sat on my lap facing me so we were face to face.  It worked very well.  He still cryed but was again distracted with our faces in each others. The Child Life Specialist got his attention a few times with play dough.  Our neighbor (another parent) blew bubbles, those ones that don't pop right away.  He liked those.  So we will keep working the distraction technique. Once he gets bigger I want to get him a pair of those virtual glasses you can play a movie in.  I had posted about those before. 

*Thank you to the nurse who suggested he be Buzz Light Year for halloween.  It worked well, it really did.  but I don't have Buzz Light Year in my arsenal of costumes.  LOL  I looked at her and in a joking manner said, "what do you think your doing".  We laughed.  Such wonderful people.

So the IV is in and he is sleeping.  I asked about running labs to see if his body is making the b-cells that are responsible for inflammation that were killed by the Rituxan.  I asked for this because of the intense itching and skin activity.  The nurse was awesome about it.  She got Rheumatology on the phone.  Of course I got the new fellow.  He asked what was going on.  He is very sympathetic and said sorry we were still having trouble.  I told him my concerns were minor but warranted.  It was very nice because the last fellow was very non chalant about my concerns which got to be frustrating.  I can tell this one is knew but at least he talks it out with me all the while keeping in mind I am a Mommie.  I am not sure he fully understood what I was asking for.  I am sure he understood but he needed to hear himself talk it out.  Today labs came back pretty darn good.  But the one thing I have learned from the past is that labs don't always follow what Gary has going on.  Overall Gary is good.  Small things bother me.  Very irritable and itchy evidence of vasculitis. Tomorrow we come back for a clinic appointment to discuss.  I venture to guess we will sit on this and give the tacrolimus more time to work.
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Thursday, October 14, 2010

Hi Ya!

Just wanted to pop in on Gary's blog and update.
Gary is doing good.  We take it day by day.  Gary is getting taller.  He is growing into a boy.  He is getting funnier and funnier as his vocabulary improves.  We have a power struggle going on in the house.  Gary verses the rest of the family.  His siblings have been getting frustrated with the little man getting his own way on just about anything.   Hmmmm.  Working on it.

Big brother McGuire heads off to camp tomorrow.  I am a little nervous but have so much going on right now I am sorting thru the wonderful emotions of life right now.  I went to my running coach certification class this weekend.  I felt like a big girl!  Back in college, on my own.  It was fun.  My wonderful, marvelous, incredible, amazing sister and her husband took the kids for the weekend.  Daddy had to work.  I left at 430 on Friday morning.  Gary had been tossing and turning all night.  He kept doing this weird swallowing thing.  He had been doing it on Thursday as well.  A few times I accused him of stealing candy!   That he was sucking on it and swallowing, trying to pry it out of his mouth.  Nothing.    Wooopsss.  Mom of the Year right here!  I woke my sister up to let her know to keep an eye on him (we were at her house).  She text me a thought on my way out.  The text said, "don't respond to this, don't text and drive, but we had a thought about the swallowing.  Calcinosis in his throat triggering his swallow reflex."   Uggghhhh.  It is completely possible.  He has an abundance of calcinosis in his neck.  Months in, when he was first diagnosed, swallowing and the muscles involved with swallowing were weakened requiring an NG tube.  After muscles have been weakened and damaged, it is thought that calcinosis is what happens in place of that damage.  That is how I understand it.  So it is very possible.  The other possibility, he has a  little post nasal drip that I can't see.  So keeping an eye on it is what is best.  If he shows any signs of distress then I will have it checked out.  He has been great since then.  But I really thought of turning that car around, and blowing off my class, because my kids come first.  During class, we discussed a lot the process of exercise and how our muscle kick out lactate ect,.  It actually made me teary eyed hearing and reviewing how our bodies work.  I had to do my best to not dwell on the fact that my sons body does this on it own to damage his muscle in an unnatural fashion.  It was ridiculous.  I had to bite my lip a couple times and tell myself to focus.  I wasn't going to let this disease in on my passion.  My passion for running and helping people with running.  It is funny how my precious sons disease can walk up from behind me as if on a sneak attack and shove me down like a bully on the playground.

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?
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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............

Tuesday, August 31, 2010

It Just Had Too

We came in thru the ER today because all the sudden the calcinosis I have been fretting about started to turn red. He woke up fine. Came down stairs, seemed ok. Made a bed on the couch. He was all excited doing that. Climbed up on the couch and then all the sudden got really cranky. Started asking for me to lay with him. I got a closer look and his chest had a red bump so I touched it like what the heck. He jumped over the moon when I touched it. So I call the nurse left a message. I called my sisters to see what they thought. My sister called me back and said that she remembered something. My brother in law was playing air plane with him the night before, and throwing him up far in the air. The nurse rang on the other line, I clicked over and barely let her talk. I told her I think he might have a broken collar bone. He got off the couch and waddled. He was in pain. I told her we were coming in thru the ER. She told me to keep him as still as possible to keep the bone in line.  At that point he was laying on my bed. He screamed when I touched him. I got him in the car in his underwear, he was so uncomfortable. He cried. He was crying because he knew where we were going and because he was in pain. The drive to the hospital is about 50 minutes. He slept on and off. He kept getting pale. Then he said I have to puke. I told him to go ahead if he needed to. Instead, he went back to sleep. It was not usual for him. We got to the ER. He was scared and so was I.  I pulled my car through the driveway, did my best not to cry.  I did my best to get my keys out of the ignition.  I was shaking.  I picked him, wrapped him in a blanket, as if he were my precious newborn.  Although my new born didn't swaddle nicely into my arms.  He soft little hands wrapped around my neck. He hide carefully under his fire engine blanket as his little legs dangled at my sides. He barried his face into neck.  He cried with every move I made.   He felt warm to me. But his temp was only 99. That is not considered a temp. They took his blood pressure. There they were. Every where I suspected he had calcinosis is a bright red blotch. Like its trying to come out. After being in the ER for an hour, his temp shot up to 103, and he began vomiting. I was so confused. I brought him in for a broken collar bone? Nope. Its not broken. The calcinosis is coming thru it seems. But then his labs came back. White count is 21,000. That indicates an infection of some kind. So tonight we are on watch. The rheumatologists don't want to pulse him if he does have an infection because that could boost the infection. But if its the calcinosis that is causing the trouble, then we need to stop the inflammation. Another fun fact: today was the first day he had no steriod. We were tapering prednisone so today was day one with none. The doctor did wonder if the calcinosis is causing his body to go into shock or infection mode as a reaction to this process. So that is were we are at. His fever broke, he stopped puking.

They ran more blood tests tonight checking for everything. I think right I would rather here he has some a virus. But the calcinosis wouldn't make sense if it were viral. So thats whats going on.


Monday, August 30, 2010

Back to School

Today is the first day of school here in the Bradford Household. I can hardly believe it. It went by very fast. This week we went on an overnight camping trip up in the mountains. It was a lot of fun. Uncle Ray and Aunt Amy came along. Dad had to stay home. He missed us very much. Gary had a whole lot of fun. He loves being with the family. He was a little whiny at 2am but did just fine. None of us wanted to come home.  We had fun playing pancake tag.  A leftover pancake became victim to being tossed on to the others car windshield. The kids took great delight in trying to toss it and driving away quickly so Auntie and Uncle didn't have time to get it back on our windshield.  This game took place during frequent potty breaks which were frequent thanks to Gary.
Roasting marsh mellow's over a propane stove due to a fire ban.


TAPER
This week starts the biggest taper yet. Every other day of 1ml of prednisone. Still holding at level "Good" . He is also adjusting better to the new medicine they started him on for the molluscum. It seems to be having an effect. They at least look better. The constant potty was getting a little tiresome. Especially while we were camping. But it seems to have finally subsided.

CALCINOSIS
I have no comment. Just stay put. Stay under his skin and go away on your own and I will be happy. I just had him in my lap. He want to bend backwards to be silly and hang upside down. In the light you can see the calcinosis throughout his chest, in his neck area. There seems to be more in his groin area. So much for having no comment. As long as it doesn't bother him. OK it bothers me, what can I do.
It is hard to see, but I put a little black pointer right over it.  



NEW FAMILY MEMBER
We have a new member to the family. I can't believe I am about to type this but we have a dog. I am not a dog person per say, but this one is pretty different from the rest. Her name is Nikki. She is a Asian Akita Mix Blonde Fox looking dog. LOL She is six years old. Her owner recently past (my brother-in-laws father). We spent a little time with her and decided to give her a home. She seems perfect. She listens well, doesn't park much, and is house broken. Perfect. She loves to play catch. She runs and catches frisbee's and ball's mid air. She seems to be patient with Gary so its so far so good.

Nicky and Elexis on her first day of school.


MAKE A WISH
Gary's wish has been put on hold. We found out in order to put up the sun protected play set, we need permits from the city. Tap tap tap. *Shrugs* To be continued.........



CURE JM Pepsi Refresh Project
We are bouncing between number one and number two in these final two days of voting. Very nerve racking. Thank you to everyone for voting!  VOTE HERE

Tuesday, August 24, 2010

Happy Heavenly Birthday to Grandpa


Photobucket
Grandpa Richard
Gary's full name is Gary Richard after his late Grandfather.  Today would have been his 60th birthday.  Sending birthday balloons to you Grandpa.  We miss you.

Monday, August 23, 2010

1 More Week of Taper, Then Even Lower

We had a great weekend.  Uncle Bill took Gary to see Toy Story 3 on Friday.  He liked it.  He is not a big movie theater fan but when Mommie's not there, Uncle Bill can get him to do just about anything.  Mommie went shopping with Auntie.  Dad, brother, and sister went down to OR to celebrate with there big brothers birthday.  So we were all separated for the evening.  Everyone went to bed late.  Gary woke up around midnight however to tell me he went to see Toy Story.  I made sure I had Buzz and Woody laying next to him when he woke up.  We woke up early the next morning for run a 8k in the next 2 towns over.  This was the kids first race.  They did well.  I was proud of them.  It was completely crazy getting there.  Daddy had to go rescue Uncle Bill in the opposite direction because of locked keys in his car so they were late.  This meant I had to start the race with the kids at there pace.  We met up at mile 1 so Mom could take off running.  It was fun.  Gary rode in the stroller with Dad pushing.  I will update my running blog later.

Picture left to right:  McGuire, Elexis, Kapri, Gary, and Preston.
Running for Cure JM
(I officially named it the Cure JM Tour)

Gary Update and  The Great Taper

We are right in the middle of rocking 1/2 ml and 1 ml back and forth each day.  So 1/2 ml one day, full ml the next and then back to 1/2ml.  It's going ok.  He looks funny.   Not clear like he was before we started the great taper.  His face looks funny to me.  Like swollen and blotchy I guess.  It could be getting up early that morning.  He also started a new med for his molluscum.  That caused diarrhea.  So we cut the dose in half.  He overall has been in a kind of bad mood.  Yesterday I gave him his med's on an empty stomach.  One your are suppose to, one you are not.  He ended up throwing them up all over the car.  He looked so pale the rest of the day.  He was still running around though so we just kept our eye on him.  He was pretty white after that vomit.  I had been giving the new medicine spaced at least an hour before or after the cell cept.  I forgot to do that.  Woooops.    The calcinosis I decided to stop looking for it.  I will monitor it but I won't go searching for it.  It drives me crazy.  

Thursday, August 19, 2010

clip_image002
In Memory of Cole Flack

Please vote so another does not fly away from us too soon.
www.refresheverything.com/makejmamemory

I'm better......

So I have calmed down a bit about the whole calcinosis  issue.  I had posted about it on the Cure JM board, then took it down for reasons I don't know.  Yes,  I can be bratty.  No one responded to it so I figured no one had anything to say about it.   I know.  This is me being transparent and honest.  I have the support on my blog so when Summer, Jenn, and Kaylee dropped me a note, I felt better.  Then someone on the board message me about the post, I felt even better.  Thank you Catherine.  She explained her son has calcinosis as well and what he has been going thru.  I suppose that is all I wanted.  Then the best sentence I read from Shari, calcinosis can resolve on its own.  So that is good and I will cling to it.

CURE JM is in second place.  We need every vote everyday.  Please keep voting.   Yay!!!

Special prayers to a family who lost there son to JDM last night.  My sincerest condolences.  He was 15.  

Saturday, August 14, 2010

Back in the News: Calcinosis

That was quick.  I just wrote about this Wednesday.  As reported on Wednesday the doctor was pretty certain he had some calcinosis.  Right above his hip and across his chest.  I am a "outta sight outta mind" kind of person.  I know, that is a weird juvenile stance to take on it but simple.  Yesterday we went to help Auntie and Uncle paint there house.   Gary paints in his underpants to avoid getting paint on his clothes.  There it was, on his chest.  You can seen a "lump" coming through on his chest.  It is colorless, but most definitely raised.  The best part is it wasn't there the on Tuesday when we were at the doctor.  I stated that I didn't mind it as long as it didn't come thru the skin.  I did want to cry for second when I saw it.  But I don't want to get the kids upset, the family, or Gary.  So I just pushed it off in my mind.  Just paint.  We will just have to deal with it.  I wasn't feeling to great after his infusion on Tuesday either.  His face and eyes were swollen and red.  But that finally started to subside. He is the best little boy.  He is fun loving.  Going thru the "I hate you" stages.  It drives the other kids crazy.  But he knows it pushes buttons.  He loves to throw out a "I hate you" with a delightful tone.  I am not going to discipline him for it because I know he will grow out of it.  Some Mom's wouldn't agree.  That's ok.  There are things other Mom's do that I don't agree with.   Oh well. : )   Think I will go run these emotions out.

My friend Summer is about to start Rituxan.   It is the same medicine Gary started.  Sending prayers your way Summer.  

Wednesday, August 11, 2010

And the great taper continues.......

Last month my cheer leading pom poms were high in the air.  This month I have brought them down to my sides.  There still twirling, just at a different level.

Yesterday was as expected.  Completely draining.  I knew it would be.  I ran ten miles the night before because I knew I would not be able to get my run in yesterday.  BLOG JUMP HERE   : )

Gary cried when we turned onto 405.  Gary cried when we turn into Children's parking lot.  He went on and on how he didn't want to talk or get a shot.  Like a broken record he repeated that over and over again.  How he didn't want to talk to anyone.

We started out at the dermatologist.  We "talked" *smiles* about what treatment we were going to use for the molluscum.  There is the standard "freezing" off but its too uncomfortable.  We are going to try a medication they use for adult gential warts.  ************I stare blankly and instantly think, I am so not picking up that prescription***************.   Of course Children's Pharmacy doesn't fill the medication.   He also added another tummy protector.  I guess they have had success with it having an effect on the molluscum.  I was surprised rheumatology gave the ok on it since he is already on a tummy protector.  Putting him on two at the same time.  They explained it works differently then the other does but I was concerned it interfering with his JDM meds.  But we got the A-ok.   So who wants to pick up that medicine for me?  No worries, I will just have the love of my life pick it up.  He doesn't need to know what its for : )  I will inform him afterwards.  LOL     Pure Evil.  I know.   "Honey make sure you ask for consult from the pharmacists, this is a new medicine."      I will pick it up.  I will just use my loud voice.  "Before I turn this in I need you to know this is not for ME!" , "Before I pay for this,  I need you to know this is not for ME!".   This is fun stuff people.


After the dermatologist we headed over to the infusion clinic.  They were busy yesterday.  It was loud in there.  IV went in no problem.  Well, the usual.   But at least it was a one poke day.  The benadryl went in his body a little rough this time.  It stung has they ran it in the IV.  He acted like it was acid or something.  We kept the cool rags on his arm until he zonked out.  Our nurse was great.  On top of it.  Our rheumatologist came down to the infusion center to chat.  She asked if we could come up to clinic when we were done.  I was surprised how well Gary did with all that.  He gets a little uncooperative.  Plus its the end of our doctors day so she I am sure has had enough herself.  I told her he is still doing good.  I am not as happy as I was last month but realize that his body will need to adjust to the tapering.  I told her swelling seems to be coming in here and there.  One minute he will look fine the next red and swollen.  The nurse had made a comment to her that he looked red and rashy when he got to the infusion clinic earlier that morning.  I told her the dermatologist nurse also commented on that.  "He looks uncomfortable."   The doctor explained she thinks that with the disease it has made his blood vessels and capillaries "leaky".  She said that she has noticed that with her other JDM kids.  Interesting theory.  I said, "as oppose to active disease?".    She said yes.  Hmmmmm.   and more hmmmmmm's.  I mean anything is possible.  I just not sure if I completely agree.  Despite a little rash, his labs are holding steady.  She paused and looked at me.  I looked at her.   "Feel like being brave."  I told her, "only if you are".  So we are continuing the great taper.  I gulp this time.  For the next two weeks we will go 1ml then 1/2 ml then back 1 ml.  If all goes well, after that two weeks we will go to 1 mL every other day.  Plug my nose, here goes the cold water.  Jump in.

Calcinosis
Just in case you forgot what calcinosis, it is calcium deposits.  Here is a link to a recent a report that I barely understand but its fun to try.  HERE  She felt the area's I had mentioned I thought I felt a little something.  Right above his hip and across his chest.  She stated she was pretty certain that is was indeed calcinosis.  If you were to tell me that he would develop calcinosis 6 months ago, I would have freaked out.  But this whole process has taken me to a different place.  He can have calcinosis.  That's fine.  As long as it stays where its at and goes away on its own then I am fine with that.  Oh yeah, one more condition, it doesn't hurt him.  It makes sense though.  Reports say that calcinosis can occur as the bodies reaction to damage or previously inflammed tissue or muscle.  We use to lift Gary by placing our arm across his chest, instead of lifting him up under his arms because that was damaging the skin under there.  Plus the reflex muscles to bring his body with  him when you lifted him was gone so it really propelled that damage.  Placing our arm or hand across his chest  was damaging that tissue as well.   As long as those calcium deposits stay where they are at.

At this Point
This morning Gary has been making frequent potty trips.  Complaining of not feeling well.  Then eats a peanut butter and jelly sandwich.  Three year olds.  Unstoppable.  We are off to try and school shop.  May need to wait to make sure he is up to it.

Saturday, August 7, 2010

Aug. 10th is next infusion

We have settled in to the 1 ml steroid dose.  How's he doing?  Good.  On my scale of:

Excellent
Great
Good
OK
Not Good
Poor

I will be able to report that there has been some slow down and minor changes.  Last month when we were in I was practically doing back flips in clinic so happy with what I was feeling and what I was seeing.  He has slowed down a little bit.  I noticed changes in some muscle strength.  When I put him into his car seat yesterday, I noticed that reflex that went missing from before is trying to come back.  Same with lifting him onto the potty.  I also noticed he was drinking something and it took a few swallows to clear.  But that was one time.  Even I get that from time to time.  He has asked me to carry him quite a bit.  He wasn't doing that before.  But we have been walking quite far so I don't know.  I don't like to "I don't know" myself.  I did all last year.  Until they started the Rituxan, and all that went away, it confirmed I did know!  It wasn't just being a three year old or my imagination or a fluke thing.  So we will see on Tuesday how his labs are and what they say.  

Where did it go?
Summer is almost gone.  The kids go back to school on Aug. 30th.  I can't believe it.  It just went away.  I hope in the next couple weeks we can get a camping trip in.  I have to get the kids back to there regular sleeping patterns.  Right now they are waaaayyyyy off.  Going to bed really late, and waking up really late.  I am going to try and get all the school business done like supplies and clothes.  That way they can focus on what summer they have left.  One of our new favorite things to do is go down to the river and take a dip.  Ever dipped in a river on a hot summer evening.  MUST TRY.  It is fabulous.  Sure it hurts at first because its really cold.  But when you get out of the water!   And its all over with!  AAAhhhhhhh.  Your body tenses, then lets go when its all over with.  Plus, your cooled down.  The kids love it.  I did it after a  5 mile run.  Really really nice!

CURE JM
We are still in the running for the $250,000 grant if you haven't heard.  Please Vote. Thank you to all my friends and family who have faithfully voted thru the month of July.  I appreciate it so much.  VOTE
The Cure JM concert is also coming up quickly!  I am really excited.  It is September 11th, 2010 in Hillsboro, OR.  Features Blake Lewis and Jessica Lerner.  We had a wonderful time last year.  Email me at roberika2@msn.com if you think you want to come.  We have a few families that are thinking about it.  I will let you know what our plans are, when I know what they are : )  The link to the concert is on the right>>>>

FUN WEEKEND
We have a jammed packed weekend in store.  Today the boys are going to the Seahawks training camp.  Why do we get such a wonderful opportunity?  We are blessed with loving, caring, not to be taken advantage of FRIENDS.  Thank you K. Patterson for the tickets.  I am staying back to let all the boys in the family go.  Want to know why?  Because tomorrow I have tickets to the hydros.  I won them on facebook.  I made up a poem, in seconds mind you.  It sounded like something a first grader would right but HEY I won :).  I have never been so that is what I wanted to do.  Yesterday was a free day so I took the kids down at the end of the day.  It was very cool!  I will post pictures later.

PRAYER
This week a friend lost her sister.  I use to work for the family at there restaurant.  The news was shocking.  I would often see them in the restaurant with her Dad having dinner or lunch.  I offer my condolences to the Potts family.  In loving memory of Therese.  It really wakes you up.  Makes you want to live life to the fullest. EVERYDAY.  

My brother-in-law is home and being watch close.  So is our house guests.  My regards to Whitney the baby basset hound.  That's it.  She only get my regards.  LOL   

Monday, August 2, 2010

A Letter from a Doctor

This is a letter posted by a doctor that someone shared on the CureJM board.  I wanted to shared.  It is kind of touching.  A little cocky.  It's a perspective at best.  Acknowledged.  But it lites my fire and makes me shake my head in equal frustration this doctor is claiming.  Hmmm.

Dear Patients:
You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
  1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
  2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
  3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
  4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
  5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
  6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
  7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
Sincerely,
Dr. Rob