UPDATE

Why is this hard to believe.  Why am I here.  Questions that come around every once in awhile as I sit waiting for the IV team.  I feel so blessed to be here, but at the same wish I wasn't.  Our clinic appointment was, well we were admitted.  Gary's opening sore he has under is arm is progressing quickly in my opinion.  I don't mean to make it out more than it is, but any hole in your childs body seems really big.  The doctors have been discussing Gary quit a bit in there Thursday meetings.  It wasn't like they knew it was going to happen.  But the puzzled look they gave me last month in clinic was a clue I didn't quit grasp.  How do they treat an open wound I have been asked?  Well I think the first order of business       being paged down to the room      more later........

First order of business is to stomp the smoldering fires out.  I compare this to a campfire.

There is a reason the camp ground asks you to throw dirt on your fire before zipping your tent up.  You don't want to burn the forest down.  Sometimes however, it still smokes and is still warm in the morning.  OK fine I get off metaphor explaination.  I was enjoying that though. I like to camp.      We need to get the disease turned back off with a heavier chemotheray (Cytoxan)  to help with this.  This was the drug that we had him on from June to September.  After 10 treatments we stopped the Cytoxan and added Cell Cept.  Over the months, slowly but surely signs of vascular damage in his armpits and the rash that leaves small raised dots on the inside of his hands and on his face, were a clue that maybe we don't have this under complete control.  Gary's armpit is looking a bit better.  They have been treating it with ointment, the name escapes me.  I sought the advice of the Smedleys right away, before we even got to our doctors appointment.  The doctors here are great about including you in on the treatment.  Dr. W asked me, "what do you think should be done?".   She was referring chosing a medication.  There is a medication that just went through a study trail, that had some success but won't be ready for a write-up for awhile.

Rituxan:   Used as chemotherapy against non-Hodgkin's lymphoma. Rituxan will not wear out the bone marrow. It does not cause hair loss or apparent increased risk of infection. Rituxan targets a type of B cell involved which does bad things, causes the immune system to destroy only those B cells.

Cytoxan:  An anticancer drug, works by interfering with the growth of malignant cells. It may be used alone but is often given with other anticancer medications. In addition, Cytoxan may sometimes be given to children who have "minimal change" nephrotic syndrome (kidney damage resulting in loss of protein in the urine) and who have not responded well to treatment with steroid medications.  Cytoxan may cause bladder damage, probably from toxic byproducts of the drug that are excreted in the urine. Potential problems include bladder infection with bleeding and fibrosis of the bladder.

The Rituxan or whatever its called works for some, but they do not know the side effects it has in store for the future.  I considered it because it sounds heavy duty.  BUT I wasn't feeling it and opted for what we knew, cytoxan.  My decision was confirmed when the Smedleys used this particular drug for Mason.  It left them with not so great results.  They are not a fan.  Shhewwww.  I was so glad to have that confirmed.   We are gettng pulses of steroids over the next 2 days.  Scheduled to come home Thursday.  I will keep you updated the best I can.

Hospital

We are being admitted to the hospital.  We will be here for three days.  They are restarting his big Chemo Drug, Cytoxan.  I will update more when I can.

Holes

It has been a great week catching up on laundry and recovering after the marathon.  I am just about ready to start running again.  I truly miss my daily workouts and can't wait.  Still having a little tenderness in my knees and heals at the end of the day but other than that I feel great! 

Gary is doing better.  We have noticed several changes though.  He had a tough time recovering from our trip.  He was extremely moody this week.  On Friday, I had to call the hospital because the skin under his arms is showing active change.   That means his skin is damaged from us lifting him up under his arms.  I think I mentioned it in previous posts.  The vasiculitis capillary damage?  Well its funny (well not really funny like ha ha)  this is happening because while in Austin I was showing Mason's Dad Gary's armpit (I am always seeking opportunity to compare and seek advice especially from the Smedley's).  He said that is what Mason's skin did right before an ulceration would begin.  I knew this.  I wasn't too concerned at the time because his armpits have been like this for awhile.   Slowly changing and becoming more and more bruised with a sort of spider vein looking pattern.  Under his right armpit however, it has progressed.  Progressed to the point where it looks like someone pinched him with a paper hole punch.  The spot is the size of a 1/2 pea.  I spoke with the nurse on Friday. I just wanted  them to know what was going on.  We have an appointment this Thursday.  One of the doctors offered to see him on Friday but I stupidly turned it down.  The kids were and still are recovering from the stomach flu.  Poor Elexis was the last kid to get it (Rob and I are still a little worried we haven't been passed up).  She had it pretty bad.  None stop throwing up.  Poor baby.  She still is eating lightly.  Anyway, I didn't think it was a good idea to make her ride all the way to Seattle.  But if I knew how much the spot on Gary's armpit was going to change over the weekend, I would have gone in.  The spot  already looks like its trying to form a crust or scab or something over it.  It is tender to the touch but so far not terribly painful.  I have been trying to lift him from his bottom or by his pant legs.  We have also been trying to lift him by placing a under his bottom and an arm across his chest.  Just by doing that I noticed his chest looked bruised.  It's all a mad game.  What I am really not trying to think about is the sun exposure he had in Austin.  Of course his armpit didn't get sun, but the sun can kick off disease activity in the body.  Uggghh.  I am beginnning to think we don't have him on the right medicine as well.  We went from Cytoxan (Big heavy duty chemo) to Cell Cept.  So hopefully tomorrow we will get it worked out.  I even entertained packing a overnight bag.  I really doubt it will come to that.  My sister has tomorrow off, so she will come with me which is very good.

THIS IS NOT Gary's arm, but looks similar.  Gary's armpit looks not as deep but very much similar.

I DID IT!

Didn't mean to neglect the blog.......Thank you to everyone who has donated on my firstgiving page.  We are home from Austin and I DID IT!   I can barely type those words without getting emotional.  It was a truly amazing experience.  I know not everyone is cut out for a marathon but to experience it is like no other.   The morning of the marathon was a bit rough.  I had gotten little sleep the night before.  I was very nervous.  I tried telling myself that I was just running, what was the big deal.   I just was!  The race magazine recommended you arrive by 530am  to avoid traffic. We were about 25 minutes from the race so we were a bit early which made things much worse.  The cold really got to me on top of my nervous stomach.  I literally did not want to move.  At one point, I had my head in between my knees and began to cry.  I had to do something or I was going to cry or vomit.  I chose cry.  I know what your are thinking. What was getting to so bad that you cryed.  This was it.  It was time to put my mouth and training where the commiment was.  We had spent money we don't have to get there.  Months of training and months of talk.   What if.  What if I couldn't do it.  What if I fell.  What if I sprained my ankle.  Lets not mention the guarantees I was scared about.   It was a guarantee that it would hurt.  Hurt in a way I had never known.  I have three children so I know as a mom what pain is but this was pain that I could control by quitting.  You can't quit having a baby.  No turning back on that one.   But this I could turn back if I wanted too.  I knew there was no way I would  but with even being there was troubling me.  The pride my husband looks at me with.  The doubt.  The certainity of it all.   So many emotions coming at me by something I created, I did, I committed to.  I think it was just too much.  It was the SO MUCH.  My sister and her fiance were looking at me like "oh boy".  They started having there doubts I was going to even get out of the starting gate.   The hour between six and seven was long, and cold.  Keeping my stomach down took great effort.  But it finally came.  My sister and brother-in-law with love and concern took my coat, and started loading me up with my stuff.  I only took two of gel electrolite packets (later was a big mistake).  Just the conversation and needing to put those things in my sleeves was torture.  I didn't want to touch anything or move for that matter.  My brother in law kept asking me if I was sure I didn't want my sunglasses or my bars or the rest of my gels.  I just wanted to run.  I wanted to face it and go. 

FRIENDS

I found two shirts in the middle of the crowd.  Complete strangers but members of the CureJM foundation, running for the same reason I was.  Never met them in I embraced them in a hug without even saying anything.  They hugged back.  I muttered I was very scared.  There words of encouragement poured over my soul as if they were words directly from God.  I glanced back at my baby sister now making her way back to get the rest of the family.  I wanted to run and jump in her arms.  But I couldn't.  My new friends knew I needed to talk it out.  They just kept asking questions and encouraging me.  As soon as 7 o clock chimed, it was time.  We began to all proceed in a walk as one.  I almost immediately felt my body release inside.  Large fireworks went off at the start line and lite the crowd up!  Something sparkly.  Feeling better.  I like sparkly things!  :)  We walked for about 15 minutes, then it was time for our "chip" to go.  We were at the start line.  I found another part of the Cure JM team right before so we tried to get together.  But I knew that this was my run and no one elses.  A strange feeling when you are surrounded by 10,000 people.  The first half mile and my body felt wonderful.  It was exciting.  I felt great.  I was so releaved to feel my body running in a perfect rythm.  We hit our first band.  They were loudly banging a native sounding drum that was electric.  People were screaming in celebration to encourage themselves and one another.  I quickly figured out I signed up for the wrong chip which I figured.  I signed up for the 16 minute per mile.  I run a ten minute mile.  So it was good and bad getting around people.  It gave me confidence but broke my pace as well. 

HILLS  

I was warned about hills over and over again.   LIARS!   That is what you call a hill?  Another aspect of the race.  I mean they had hills but I was expecting WAY worse.  Thank you to all the over exagerrators.  Come to Seattle.  I will show you some hills.   LOL  We go from Sea Level to Mountain Ranges in the matter of minutes.  Now that was up and running, everything went mostly well.  I was having 2 problems.  I became very hungry, and my pants kept falling off my hips.  I texted my family that they needed to find me because I needed my energy bars and different pants.  I made 10 miles by 9am with a 715am start.  I was very anxious to make that mark because the magazine said that any full marathon runner that did not make the 10 mile mark by 10am would be diverted to the half marathon and not receive a finisher medal.  I made it with an hour to spare.  Ssshhheeewww!!!!    

LIFE SAVERS

Well it was actually jelly beans that saved my marathon butt!  LOL  My family couldn't find me.  Street closures, tons of people, confusing routes, it just wasn't gonna happen.  I had to come to terms with this meant I just needed to cope.  I yanked and yanked on my pants.  I literally was trying to give myself a wedgie hoping my hinnie would assist me in my discomfort of needing to pull them up.  I could have taken them off, but you know, I didn't feel like getting arrested or tazed or making the evening news.  LOL  I did have shorts on my then I risked triction burns in places I didn't want them.  My hunger was really starting to rob me my energy and I began to sweat more, breathe harder and slow down. The marthon route went thru many residential neighborhoods.   So people set up in there yards to root people on with signs, bells, whistles, and CANDY!  Thank you to the young girl with a bucket full of jelly beans.  You are part of my success.  My family was trying very hard to find me.  I was able to text that I found some jelly beans and was feeling better.  I told them not worry.  I would survive.  I stopped at almost every water station from that point out.  The water starting tasting funky has the Austin sun warmed the day up.  Wax cups and water  BLAH.  After that I only stopped for anyone who had power aid.  The more miles I went the more frequency I had with run walk run walk run walk.  My wordrobe malfunction started to work itself out as well.  My family had given up on finding me.  They said they were between 21st and 22nd miles.  Something that gave me fuel, something to look forward too.  The gradual ache and pain came on.  I looked for the sign I needed to see so much.  The next mile marker. The picture is appropriately fuzzy LOL.  Those signs were great.  Once in awhile someone would have the same color jacket on.  It would make me angry when the signed moved because I quickly figured out it was not my beloved mile marker!

PASS and BEING PASSED

Towards the end when the running on nails kicked in, it became a game of I pass you, you pass me.  I sort of got into a pack.  It didn't bother me like I thought it would.  One of the more difficult aspects was the cheering sections.  These people have been out there all day.  Cheering for 4000 runners.  I could not bare to walk past them.  I did walk past a few cheering sections.  They are still encouraging but you got a much better response if you were at least trotting.  They really like it if you look like your in pain.  Which most of us were.  It also did not bother me that I was playing the pass and be passed game with a gentleman in his 70's.  So awesome!  He did so well.  I was so proud of him.   After so many miles the emotion started playing in because I knew at this if I had to crawl, naked, and bloodied across the finish line, I was going to do it.  Ok  maybe not naked.  But you get the picture.  It kept hitting me, Oh my God, I've got this.  I just might do this.

MILE 21  Energy Revitalized

There, just past mile 21 was my reason.  I began to whimper and sobb as I approached them.  I quickly sucked it up because I wasn't done.  The skys were clear, and the temp were reach the 70's.  I hugged them.  I especially stopped to hug Gary.  He stood there, unfortunately in the sun, clapping tenderly.  He didn't make eye contact with me so I got down face to face and kissed him.  I didn't stay long.  I guzzled some gatorade.  I was good to go.  I cried more as I ran on.  As always, it's all crazy beautiful. I thought as I ran on how lucky I was to have them all.

THE FINISH LINE

None of this was going to be easy.  I knew this.  By mile 24 and 25 my hip flexor was pinching on right side and my left foot was cramping.  I was having to compensate on both sides.  About a mile away it got really quiet.  The route took us through the University of Texas.  Everyone was walking at this point.  "I was hoping I would catch up to you."  I turned around and there was Kelly.  Kelly had the familiar blue shirt of Cure JM  on.  My angel in blue!   I almost cried again when I realized I would not be crossing the finish line alone.  She said "1/2 mile away".  Someone called from the crowd,  "6 more blocks runners!".  I admit I was surprised.  I thought I had another mile and 1/2 left.  I was happy to lose count.  Someone called from the crowd we could walk all the way up to the .2 mark then run it.  So that was just what we did.  It was wonderful.  Kelly took off running.  So did her companion.  I found myself in a full run.  I saw the clock.  I was 2 minutes away from keeping it under 6 hours.  I ran like hell.  Of course my pants started falling down again!  But I was just happy to be done.  I cried.  What an amazing experience.    I collected my finishers shirt, grabbed bags of chips, and went outside the finishers tent to hug and congratulate the other finishers from our 'team'.  It was great day.

MY FAVORITE PART

My favorite part was getting the call from my Mom and Dad.  The moment I told them I was running a marathon, they seemed worried.  Worried my body wasn't designed for something like this.  They were worried I would injure myself or not make it and be disappointed.  They used great concern and caution when encouraging me.  My Dad was so proud he was near tears when he heard I had finished.   *TEARS*  I texted him on my 13th mile, "13th mile Daddy!".   They picked us up at the airport.  My mom could barely look at me without tears flowing down.  They even came over the next day to check on me.  Dad wanted to see my medal again.  I love them with all my heart.  It makes me so proud that they are so proud.  Such wonderful blessings. The picture is my parents dropping us off at the train station.  Thank you Mom and Dad for everything.  For helping me, for loving me, and for making me, me,  well with the help of God as well.

NOT FAVORITE PART

In the excitement of the marathon we were caught off guard by the weather.  I had kept an eye on it all month.  Rain was expected.  When we landed in Austin, it was cool and cloudy.  The next day it rained and rained.  Sunday came and it was clear and beautiful.  For parents of a kid that is very sensitive to the sun, this is not a good thing.  Gary was exposed to the sun.  When I came in on the 21st mile I immediately had bells going off in my head.  I hugged and kissed him then looked at everyone and said "get him covered up as soon as possible".  I crossed the finish line.  Took photo's and everything.  We looked down and Gary was throwing up all over.  And it wasn't a cute little up chuck.  He was full on heaving.  I had to get off the phone with my Dad.  I picked him up and began hobbling to the car which was about 4 blocks away.  Everyone tried to take him but he wanted me.  He threw up more and more.  It was our first domestic bug or over exposure to the sun or a bit of both.  We got him back to the hotel and put him right in bed which is where I wanted to be at that point too.  He slept for a few hours, woke up again and vomited, again.  I called Children's in Seattle because like I said, it was our first time since being diagnosed.   I have heard these kids can dehydrate quickly.  Their bodies have been through a lot with the heavy drugs.  I did not want to take any chances.  But the rheumatologists said to keep him hydrated the best we could.  Make sure he was peeing.  If we couldn't get  his meds to stay down then we would need to get a anti vomit drug.  But it didn't come to that.  He woke up that night and his stomach opened up.  He was better.  Thank you God!  The sun left behind a terrible rash which we are keeping an eye on. It's better today but was much clearer.

SPECIAL THANKS

I know there are so many people I have on my heart to thank.  I thank everyone for there generous donations.  But I wanted to publically thank the following people in my life who were involved in my training nearly every single day and made it all possible. In no particular order:

Thank you to April Fleming.  April is one of my best friends.  She would willingly watch Gary for me 3 and 4 times a week so I could run and train.  She encouraged me so much.  She never doubted.  Gary looked forward to going over to her house to play with kitty, watch cartoons, and eat all of Auntie April's snack.  That made it so easy for me.  I love you April.

Thank you to my brother-in-law Bill Saas.  Not only did he take Gary for me nearly everyday, he would often hunt me down "Your running today right."  He even printed out a training schedule.  He held me accountable to what miles I had done.  He was encouraging above and beyond.  He even joined me on a run during the holidays.  All this energy he put into me despite his own struggles, including breaking his knee 2 weeks ago.  I love you Bill!

Thank you to my sister Amy.  She encouraged me so much.  We would not have been able to even go to Austin if it wasn't for her.  I love you as much as I love myself.  Thank you for all that you do for my family and for my children.  You are a wonderful Auntie.  I had a wonderful time in Austin.  Add it to one of our many adventures we will be yapping about in the nursing home years from now. Thank you for being apart of it all. *Thank you too Ray!*

To my husband, my reason for doing my best to be the best mother and wife I can be.  His positive up beat energy drove me.  He was just as nervous has I was the morning of the run.  I am a lucky girl.  Thank you honey for sharing in my passion.  Thank you for taking me to Austin, Texas and being there for me.  I am so glad I did not let you down and not finish.  You are that important to me.  I love you so much baby.  I love you so hard.  Your the sunshine on face. 

THANK YOU to all who made donations!

To be continued.....

One Last Post

Thank you to everyone who donated to Cure JM  in the name of ME running 26 miles and for my precious baby boy.  I love you all!

Infusion went good yesterday.  We got our own room this time so Gary was able to lay in a bed and sleep.  His levels are good.  Had one pop up but its all about the grand scheme of things.  If I was unable to answer an email or reply to someone, I am sorry.  Busy getting 5 people ready to go.  I will do my best to let you know how it goes.

Another HUGE heart felt thanks to all who donated and campaign'd for donations.

EXCELLENT progress today.  Check out my progress HERE

It's almost here!

We leave Tuesday for Austin.  Our family is very very excited.  We are going planes, trains and automobile style.  Before we go though, we have an infusion tomorrow ; ( .   Gary is doing pretty well.  I could say he is stable.  No new or worsening symptoms, just seems to have leveled out.  He is still has become a bit unsure of his balance at times.  He has fallen more than once this past week.  But as always, its the fine line.  Is it because is he toddler or does he have some weakness.  I know he has some weakness.  I can see it and feel it.  His skin is better than it has been.  I am a little apprehensive because we leave on Tuesday at 6:15pm.  He won't get much down time to recover from his IVIG and steroid infusion.  I have a feeling though he will be just fine.  We are heading down to Portland on Amtrak to catch a 6am flight to Austin so hopefully it will be more of a distraction for him.  PRAYING.   We have a few days to explore.  I am staying off my feet right now.  I did a quick 2 mile warm-up this morning, but other than that I am saving it for the marathon.  I run Sunday, Feb. 14th.   I will try and keep you updated to let everyone know how it went.  I admit, I am a bit nervous.  I don't know why, I just am.

If you haven't had a chance to donate, there is still time : ) .  I put a new video up on my fundraising page.  All the cool JDM families were doing it, so I did one too! THANK YOU to everyone who donated to the cause.  I still can't get over how amazing you all are.  DONATE HERE

: )...........

CureJM Video with a beautiful boy in it!

Check UP

Last post was a check-in, this post is a check-up :).

Gary had a check up with the rheumatologists today.  Overall, I think the appointment went well.  I have 2 sisters.  We are close.  I find myself to be a bit more confident when one is at my side.  If both are at my side well, you really just don't stand a chance.  Today my younger sister came with us to the appointment.  Words flowed and points were proven.  In the past couple of months I kept getting the notion that Gary was just doing fabulous from the doctors point of view.  My view is that he is doing well, but not at level that would make me unzip my bag and pull out the pom-poms.  In fact in pervious posts I tried communicating that I was a bit on the frustrated side.  Ahhhh the nature of the disease.  They should label "frustration" as  a symptom.  A few weeks ago, Gary's labs came back great.  Mostly normal.  They were happy about that.  I was and was not happy about it.  Despite great levels, he has active skin rash.  Not just the typical JDM rash, but just really colorful, active skin.  On his tummy, the back of his neck, his face and bruising underneath his arms.  Despite levels, he looks like a patient with active Juvenile Dermatomyositis, drug dependant to keep it from doing some real damage.  Tender red hot cuticles that only improve for a moment after IV steroid infusions.  I feel like at today's appointment they finally really saw what I have been seeing.  I can't understand why this makes me feel......accomplished.  It shouldn't.  Do I want to hear that he is fighting it, of course not.  Do I like the worried or concern they seemed to show with everything he has going on, NO I don't.  It makes me want to cry.  But it is a comfort they understand just what I am talking about.  Gary is presenting some weakness.  The reflux that children do when you lift them up underneath there arms has declined I would estimate 60 percent, if I had to put a number on it.  With this weakness returning, it causes damage under his arms.  You can see our finger prints bruised into his sides.  The doctor described it has vasculitis.  Vasculitis is the inflammation of the vascular system.  Not that veins but the tiny capillaries.  (As I understand it.)

This is what the internet says about it.

Vasculitis (vas-kyu-LI-tis) is a condition that involves inflammation in the blood vessels. The condition occurs if your immune system attacks your blood vessels by mistake. This may happen as the result of an infection, a medicine, or another disease or condition.

Gary was done, but the appointment was not.  He would not let the doctors touch him.  Hitting, spitting, kicking, whacking, and smacking come into play.  So Mommie took over the exam.  We were trying to get him to open his mouth which is never very successful.  But this time Mommie layed him back on her lap and said, "Say Aww".  They got a clear shot!  On the roof of his mouth was the same vasculitis looking rash sort of thing that the doctor saw right away and pointed out to the other doctor.  I had noticed that a week or so a go when he had taken a sip of orange juice, it stung.  Some of his medications can cause mouth ulcers.  I went looking around in his mouth for the mouth ulcer.  I did not find one, but did notice the roof of his mouth looked funky.  I don't know what I am looking at so I wasn't alarmed.  I especially don't know what the roof of my own mouth looks like.  Do you know what yours looks like?  Me either.

So as of right now, we watch.  We have upped all his med's and that was only 2 weeks ago.  They want to give those doses enough time to take full affect.  I couldn't agree more.  I told them I would just keep watching closely.   It's that whole, "Hmmmm" look they leave the room with that is just so..................interesting.

Checking In

Gary is doing good.  Our next appointment is Tuesday for a check-up or in with the rheumatologists.  Our next infusion is on the 8th.  He is still having skin activity and some funny bruising under his arms.  The bruising I know is from when we lift him up.  His arms or whatever weakness he has in muscles around that area causing bruising in his arm pits.  We try to lift him from his bottom.  Other than that the rest of his strength seems to be good.  We have been using ice for his fingers here and there.  He finally started sleeping a bit better the past couple nights.  We have had a busy start to the New Year.  Tuesday night we made dinner on the dash of the car. No I am not kidding.  Running between cheer and basketball, I put together our whole wheat bean burritos right there in the car.  We are keeping busy.

STOP IT

Today was our infusion.  Gary went to bed last night in a bad mood.  Woke up in a bad mood.  Throw some steroids on top of that, and look out.  My poor little guy.  I felt so helpless as a mother. Thank heavens for cheeseburgers (that will make sense in a moment).  After Gary's pulse he lost it.  He lost it like I have never seem him lose it before.  I remember the very first time in the infusion center and listening to a young man screaming at the top of his lungs.  I could hardly believe it was us this time.  I don't remember what set him off but suddenly he was screaming stop it at everyone (me, the nurses, innocent bystanders).  He screamed with intense fury.  With great effort he swung, scratch, hit, pitched kicked anything he could get his hands on.  I was calm but in awe.  A small little guy with no hair and an ng tube in his nose was in the next room over.  Gary screamed with like fireworks on the forth of July,  "SHUT UP BABY!  SHUT UP!!!!!!"  

Oh my.

What do I do?  I tryed everything.  I tried hugging him.  No touching.  He eventually ended up on the floor, throwing himself about threatening to pull his IV out.  I asked the nurse to please double check the correct dose of steroids was given.   She quickly went to check.  It was the same as he has always gotten.  I then asked her to maybe page the doctors and see what they think.  He has been mad before and hard to deal with before, but nothing like this. 

Then the lunch tray came in.  I quickly snatched it from the nurse and lifted the top to show him his cheeseburger he had been asking for all morning.   I showed him the ketchup and how he could dip his fries in it.  He went from 90 miles an hour to about 25 miles an hour in 15 seconds. 

Cancel that page to the doctors. 

Now those were some serious steroid munchies.  I just needed something to reset the switch.  Thank you cheeseburger.

Angry Cheeseburger

Back for an infusion

The doctors called today to discuss the direction we head in now.  They want us to come for an infusion this week, again.  Since we upped his other medications, they are going up on his IVIG dose as well.  So we must return for the rest of our dose.  They will also pulse him again with steroids.  We will return to our regular scheduled infusions once a month in February.   We go in tomorrow morning at 8:45.   The doctors meet every week to discuss there cases.  It was determined that given the inflammation that exsisted and his rash activity, no one is certain we have turned anything off so to speak.  They don't know, I don't know, so we wait and watch.  When the doctor called and asked how he was doing, I told him he was doing great.  He is super boy after pulses.   I did tell him you can tell it is starting to metabolize because his rash and skin just gets slowly redder and prominant.  He starts having more fits.  But then again its hard to tell with being 2 and steroids. 

It is January.  He turns 3 in March.  I will almost not be able to say he is 2 anymore!  I was looking at his bottom yesterday in his scooby doo's.  It is amazing how little it is finally getting again.  I remembered in the summer how his poor backside looked as if it may explode at any minute from all the steroids.  He has gotten taller and the effects of the steroids are starting to fade away.  That makes me happy. 

MARATHON TRAINING
I ran sixteen miles on Saturday again.  It went ok.  I was extremely nervous but its all worth it!  I am excited and very very nervous all at the same time.  What do I get myself into?  : )  Can't wait.  I am also trying to leave some baggae at home safely.  Translation:  I am safely trying to rid of as much body weight as my body will safely allow.  I figure the lighter the load, the easier the run.  My feet get pretty sore.  I looked as if I am injured when I get out of bed first thing in the morning.  But it just takes a little walking around to get the stiffness to work out.  I ran 4 miles yesterday.  It was probably the best run I have yet.  It was warmer out so that really fuel'd me.  I think we are taking the kids to Austin with us.  It was really important to me that they get to experience this as well.  Our whole family is effected by this disease so they have earned it.  It is important for me to see that they you can do anything you set your mind to, well within reason as well.  If I set my mind to be Shaq and play in the NBA, yeah it aint gonna happen.  But if you have it (the almighty Lord blessed you with it), then put it to good use.  So 2 legs, 2 feet, am I putting them to good use?  LOL.   It will be interesting as always figuring it all out financially.  I worry about that part but it has always always worked out.  Why start doubting now.  I have not told the kids they are coming.  I have said maybe,  maybe not.  I know they are going to be thrilled! A special thank you to Auntie for getting us there, we hope.  Flight loads are already pretty full.  Might have to get creative.  Can you say road trip? I hope we don't have to go that route.  But I am committed!

*Special thanks to the late Michael Jackson for pulling me thru the 11th mile on Saturday.  I would have bailed if it weren't for his song BEAT IT.

THE KITCHEN
I am very excited to get a new kitchen.  I am not excited because I do not have one right now.  The entire contents of my kitchen are in the rec room.  I sit here now with all the cleaners and medications above me safely up high on the computer desk.  We had an unfortunate flood underneathe the kitchen sink.  It soaked the carpet all the way into the dining room. The damage the water caused was beyond us  (underneath the cabinets, ect).  They gutted the kitchen yesterday.  It was interesting cooking dinner last night.  It will be for the whole week.  On the big up,  I get a new kitchen?

Up

The rheumatologists and the dermatologists have decided to increase a few of Gary's medications.  He is going up on Cell Cept, Plaquinel, and Methotrexate.  Hopefully this will be the magic combination.  Gary is doing VERY WELL right now because he was just pulsed with steroids.  He is like my little super boy!  His strength, his skin are great.  IV steroids really seem to do the trick.  Last month was the same way.  We sha2ll see what he does this month.  If his skin stays quiet and strength stays good, then great!  I will feel like we are putting some smoldering disease out.  The one thing I felt encouraged about was that his current rash is not from sun exposure.  Why do I feel that way?  I guess because I know its not something I am doing or am not doing to contribute.  In the summer time, I always felt anxious while he played in the yard, even under cover.  I know there are still UV rays in the winter but we really don't spend enough time out there.  I could tell if it was summer time the dermatologists really wanted to point

My Conclusion
Gary's levels came back great.  But physically his levels are not an indication of those levels.  So if you are a fellow JDM patient, and I know my friend Summer can testify to this, it doesn't mean all is well!  The next doctor that does a little cheer leader cheer at me when his levels come back good, yeah.   Cute. 

I know he will kill me when he is older for posting this, but I just couldn't help myself. 

My baby boy rocken his scooby doo's waiting for the dermatologist.

2010 Kickoff

We had our infusion yesterday and all went smoothly.  Gary tolerated the IVIG well this time.  Last month he had a bit of a reaction.  LEVELS  levels came back great.  Yes, of course I celebrate this but we are still having active skin issues.  We saw the dermatologists today.  He said exactly what I thought he would.  The rheumatologists say that the new rash he has had since September is not JDM related.  Dermatologist said it is.  He said they would be in contact with me once they get together and discuss.  He was thinking of suggesting we up a medication.  I was thinking it was a good he said it was JDM only because I didn't want to hear "I don't know".   We talked about how great his levels are but the small things that I have noticed, like poopen out at the top of the stairs or when I lift him he doesn't feel as tough as he was, like his arms are going to fall off at the arm pits.  That was confirmed because he had unusual bruising in his armpits.  I told the dermatologists that I understand his levels are good but I am in contact with other JDM families who have seen normal levels, but disease activity.  I told him I am not trying to be negative or make things they are not.  I have just seen what this disease could do.  The disease seems to have technique to sneaking in behind enemy lines and stricking.  I just want every possibility considered and treated.  I had posted a vent on the support board about not knowing.  Not knowing if Gary's voice just changed to a low pitch raspiness.  It sounded like he was whispering.  It returned that afternoon but it is enough to notice.  I have 2 other kids and a lot going on so when something small like that is noticed, well then, it is note worthy.  I got a lot of good advice from the board.  I am glad it is there.

39 Days left    : (    eeeeekkkkkssss   till the 26 miler!

MRI

Our Christmas Eve MRI went smoothly.  Gary was a hoot on laughing gas.  The team was very impressed with his cooperation.  They said toddlers can be difficult because they don't like the mask on their faces.  But the mask was attached to a green balloon.  Each breath Gary took it would go up and down.  One inflation of the balloon, he thought that was pretty funny.   That first breath being gas made him want that mask on to make the balloon go up and down.  Giggling commenced.  It was precious.  It wasn't long before the laughing gas turned into the smell of the ocean, as the nurse called it.    My sweet prince was then in a sweet slumber.    We were asked to leave.  So Mom and Dad went up to the hospital cafeteria to grab some Christmas Eve breakfast.   He was returned to our room all hooked up.  He had what looked like a tube but really was just hold him tongue down.  That was hooked up to oxgyen.  The nurse came in and watched him.  As soon as he took a deep breathe she removed all the stuff from his mouth.  He slept for another hour.  We were able to get hisIV out while he was still out of it a bit.  The ride home he was quiet.  We stopped and got him a Christmas Eve Cheeseburger and chocolate shake.  He was quiet the rest of the afternoon.  He did well!

RESULTS
The doctor called 6 that night.  He said overall it looked good.  There are some muscles in his pelvic area that show signs of inflamation.  The doctor says there is no way to tell if its old inflammation or new.  So we were cleared to go down again on his steroid dose, from 4ml to 3ml.  That is a good thing.   Our next infusion is on January 4th of steroids and IVIG.  Then we have an appointment with the dermatologist on the 5th.  Someone actually asked me if he has chicken pox!  I am hoping the dermatologist has answers to what this particular rash is.  The rheumatologists bounce back and forth on whether they think it is from dermatomyositis. 

I have my own frustrations with the doctors.  I know they do the best they can but sometimes I think even they forget they are human.  I was asked, "do you pick out every little thing with him?"    Meaning do I pick out everything I think is wrong with him.   I replied, "why yes I do, wouldn't you if your child had a disease?".  No worries, just weeding thru an ego some young docs tend to pick up.   He had made that comment after I had told him about Gary seemed to be having a little trouble on stairs again.  It was nothing significant but a change.  I would think they want to know every little thing.  I would if I was a doctor. 

Last month they expressed concern over his liver.  The levels for the liver had come back down I guess because it was not even mentioned.  Since we are seeing the dermatologist next week, I will ask what he thinks about that.  I know he is a skin doctor but sometimes when something is off in your body, like the immune system, it can cause a rash. 

SPONSORS
I am so excited!  I got my first two sponsors!  Really excited!  I ran 10 miles yesterday and I have to admit, it was a rough ten miles because it included hill training.  I read the Austin Marathon is very hilly.  PRAYERS welcomed!  Thank you to my first 2 sponsors.  It put me in tears this morning.

Merry Christmas Eve Eve

Gary is so excited for Christmas.  He keeps hugging and kissing my leg, looking up at me says, "ho ho Mom? Predants Mom?"   He runs away in half dance of cheer.  So precious!  My older two just want to know how many.  They are very concerned with counting.  I refuse to wrap there's though!  Oh the anticipation.  We had a clinic appointment yesterday.  It went fine.  We just did a recap of what is going to happen with the MRI tomorrow morning.  The MRI sounds like no big deal.  Easy for me to say.  I am not getting the MRI, Gary is!  I have read about a few bad experiences but I am sure it will go smooth.  I will definitely bust out the soft Christmas jammies for him to sport tomorrow. 

I AM COMING OUT
I suppose it is not official until I am registered but I have every intention of doing so.  I have been running for the past 2 weeks, this is my 3rd week of running and trying to prepare my body for the Austin Marathon to raise money for Cure JM.  If I make it, most fantastic (meaning complete the 26 miles), if I don't, OH the utter humiliation but it was good to give it a go right?  So far I am up to trying to do 8 miles a day.  Yes, I run        ok  jog     is more the word   8 miles a day.  I did try to run yesterday and hit a really big bad wall.  I had nothing left.  Holiday shopping and baking kind of robbed whatever extra I had.  I tried really hard but I did two miles and said hmmmm no way.  I think it is important to listen to my body.  I have tried to up it to 10 but I am not there yet either.  But that was after doing 16 miles in 2 days.   I know, I am I going to do 26 if I can't even do 10!  I still have like 50 days left.  In 19 days I have completed 88 miles.     Oh Good Lord, Heaven help me!  I have pledged to raise 1,000 dollars  : ) .  http://www.firstgiving.com/garyvsjdm2 .  Wish me luck and send the power my way.

Eye Check

Gary's eyes looked good!  Back in 6 months to keep an "eye" on his vision.  Wink wink, get it?  Eye vision   ok     stop it 

A Christmas Present

We have our MRI scheduled for Thursday, Dec 24th.  It was the soonest they could get him in so I took it.  I figured we will do it early in the morning.  We should be home by noon.  It shouldn't interfer with Christmas Eve festivities.   If it does I know my family will be understanding.  It will be good for Gary to recover around everyone.  They are all loving distractions for him.   

An MRI, with a bow on it for my little man.

So maybe he needed a pulse of steroid...

Yesterday Gary was feeling much better.  So much better that the pesky rash around his mouth and eyes is a lot better.  It looks like it has faded.  This is so great, and not so great in my mind.  It is great it's better, but it is not so great that he actually needed it.   I was really hoping he wouldn't.  I am sure we will find out next week if he will continue to need pulses?  He also didn't do any itching last night.   He slept a bit better than usual last night.  The night before was hard but he wasn't sleeping because of itching.  He needed to hold his balloon.  Every time the balloon slipped out of his hand, he woke back up freaking out for me to get the balloon.  Steroids can make kids a little crazy.  He is so cute.  We were watching Calliou for the millionth time, but a new episode.  This episode was about Calliou going to school.  Calliou hugs his Mom good bye and goes to school.  Gary turns around to mimic what he had just seen.  Then BURSTS out crying at the thought of having to leave his Mommie.   I had been entertaining the idea of getting a part time job again like I had before when Gary got sick.  To help out with finances.   Guess that won't be happening any time soon.   I couldn't bare to put him through anything like that right now.  He has to go thru enough. 

Summer, thank you for your comments.  I really love getting your point of view on everything.  You are wonderful.  I hope you feel better soon.

Rocky Road, Not the Ice Cream

Today we had our IVIG infusion.  All did not go as planned.  The infusion center has never been a picnic.  We try and make it one, but it never turns out that way.  I was 15 minutes late due to lovely traffic.  I never worry though.  People of Seattle just understand sometimes.  No one said a word about it.  As we settle in our nurse handed me the list of medications he would be receiving that day and what he takes at home.  They do this for verfication to make sure everyone is one the same page.  A lot times old med's are on the list or the wrong doses just because certain departments didn't do updating, no big deal.   So going over the list today it didn't strike me twice when I saw methopred (IV steroids) on this list.   I of course said oh we are not getting pulsed.  We are here for IVIG only.  He said really?   That is what they have ordered.  I said well get on the phone and call someone because that is not what I was told.  Definitely not what I expected.  So they paged the doctors.  The doctor gets on the phone with me.  He explains that something about missing a meeting so he doesn't know the explanation.  I couldn't understand his accent over the phone so I just agreed.  I knew that the nurse would help me understand and get it straight.  At that point we were definitely on for IVIG.  We numbed his hands up with the numbing cream and wrapped him up in warm blankets.  The IV team came.  Gary screamed and protested of course but it was good because he was distracted.  Calliou was on the television so he would do little spurt crys.  Distraction, numbing cream, and heat are the name of the game.  He did end up getting poked twice though.  I knew something was up when they took a lot more blood then they usually do.  We had just been in 1 week ago for labs.  A little bell went off in my head.  I paid no attention to it.  In the mean time the doctor had called me back to explain why they were pulsing him.  I got on the phone with him.  I could not understand a word because poor Gary was screaming.  I handed it back. I told the nurse to get the explanation.   We would go from there.  They explained that he needed the boost since coming of the cytoxan and starting the cell cept.  I felt frustrated (not at the doctors), let down, confused, and almost defeated.  We are down to 4ml on his home steroids.  I thought this was the beginning of the great taper.  I did not want him pulsed.   I want the effects of this drug to go away.  Life saving, yes.  Damaging, yes.   He has begun to slim down.  He has been having a much easier time getting around.  I can tell he is more comfortable.  UUUuugghghhh.  Not what  I expected.  So I settle into the idea.  It is what is best.  He needs it, he needs it.  It is hard when you think you are headed in one direction then suddenly go in another. This was only confirmed when my senior doc came down to the infusion center for a little chat.  She sat in front of me with a huff.  "I want to talk to you about were we are heading."   She told me his labs are ok,  not good, just ok and she is feeling frustrated.  During the past couple months Garys has showed signs of disease activity with a rash.  More than one rash in fact.  Gary's labs have been bouncing around, up and down.  Months ago I express concern about it.   She was great.  She did not want to go chasing a rash with harsh drugs.  It doesn't seem to be panning out though.  You know when you are baking something in the oven?  You open the door to check on the progress of your dish.  A blast of heat comes out when you first open it.  You stand back for a moment so you don't catch it in the face.  Yeah, well this conversation was like forgetting to stand back and taking the flash of heat in your face. 

 

Where We Go From Here

Gary still has good energy and strength.  His skin, not the greatest.  Levels, could be better.  Next week they want to put him under and give him a MRI to check for muscle inflammation.  After that we will be doing an ultra sound of his liver.  The rash that doesn't seem to be related to JDM could be a result of his liver throwing off irritation.   Since he did have liver level that was elevated they want to ultra sound it to make sure it's ok.  If it is irritated, she explained we would need to get him off the steroids as soon as we can.  This is where it gets interesting. 

Finishing the day out went a little rocky.  We ended up not finishing the IVIG.  He woke up from a nap.  He began having some kind of reaction.  His arm was red, and itching.  He was complaining of pain.  Flipping himself everywhere.  They paged rheumatology over.  They ran another round of intravenious benadryl.  Gary was very spacey walking out of the hospital today.  On top of that they gave him the HINI vaccine. 

Shewwww.  What a day.

Already the effect of the steroid pulse is turning the house upside down.  Please don't talk to the two year old.  He may spit on you in addition to kick, hitting, or biting you.

Holiday Kick Off

Yeah for it being that time of year again.  Boo for it being that time of year again.  I hope everyone had a wonderful Thanksgiving.  We did!  Lots of family over.  I love being with family.  We even got to meet family I have never met before so it was definitely good conversation. 

We have our IVIG infusion this Friday.  We arrive at 815 in the morning.  I purposely scheduled it early because last time IVIG took eight hours.  Gary rash on his face that I have been waiting patiently to go away on its own has not.  It is looking redder and a bit rougher.    His levels that were low from the cell cept came back up enough for us to increase the dose to max for him.  I told them he still pale.  They said he is anemic so to start him on a multi vitamin with iron.  His LDH level also popped up but we will just have to keep an eye on it.  His strength is excellent.  He has been a bit sluggish but I am sure that is from the anemia.  Time to serve this family up some liver.     Gack!   No way.  We have appointments set for a dermatologist and to have his eyes checked.