Friday, April 29, 2011

Rituxan Again

I didn't hear from our doctor yesterday so I put the call in today.  I don't like to wonder.   Not about Gary and his treatment.  It drives me bonkers.  Unless I am extremely distracted, the bonkers don't get me.  But it was getting me because of how I left feeling.  I called the nurse line.  The nurse called me back an hour later and left a message.  She said that she was in the Thursday staff meeting yesterday and it was agreed by everyone he would get another round.  His last dose was 4 months ago in December.  We were trying to shoot for every six months.  I just hope this isn't a sign that its going to eventually stop working.  I'm gonna go eat a donut and think this over.

Thursday, April 28, 2011

Clinic April Appt.

So despite a few labs that popped up, Gary's doctor didn't seem to alarmed.  I am still sorting through this as far as how I feel.  Upon examination, she found calcinosis to be a tender point in his hip.  She doesn't seem to think it is from progressing weakness.  She mentioned his hip might be a little tight, but once she hit the calcium, that is when he complained.  Obviously that is not a good thing being that the calcium is interfering with the way he walks but at least it doesn't seem to be that his muscles are effected.  I think.  I still don't like his energy level change, and the fact that he has been using extreme caution on stairs and getting in out of the car.  But still handling the action of a step fine.  Not has great has before but fine.  I guess at this point I am going to keep a close eye on him.  Even if a lab pops up, making sudden changes in medicines or treatments isn't what I want to go through either.  Having to wait to see if a new med would work ect,.   We had labs done again to see if Gary needs another round of Rituxan.  We should here back today if that is the case.  She said she noticed a few changes in his capillaries but overall, from what she can remember, they look better. All medications will stay the same.  Toe's are still crossing.  Just for information purposes and documenting:

  • Crossing Toe's: *Note orthopedics said it could be a muscle imbalance, translation weak muscle.
  • Overall Tiredness
  • Complaints of ankle and hip pain
  • Skin-I think looks the same purple reddish but overall no ulcerations of anything like that.
  • I noticed this month bursting capillaries in his nail folds but by the time we got to the doctor they had grown out (meaning the capillaries damage,  burst, bleed, then dry out and then heal under his cuticle. These are very small so its a matter of knowing what to look for.)
  • Elevated Aldolase level.  

Auntie came with me to the appointment yesterday.  She said after we were done I didn't do a good enough job communicating my concerns and description of what I have been seeing and what I was feeling.  Hopefully I will catch her on the phone and at least get to say  my Mommy Tummy (maternal instinct) are feeling funny.  I have bells going off right now.  I try to stay rational but it is such a tricky action or emotion to deal with.....decide what is necessary to become upset about and get things done or remain calm, rational, see how it plays out.  After hearing about his level that popped up a bit,  I was just amazed about how I could see it in his actions and feel it as a mother.  I think a lot of times too, our doctor doesn't like to make quick decisions, especially with everything that Gary is already on.  Gary's JDM has done a great job of keeping everyone on their toes.  I think its fair to say that she likes to discuss with the rest of the department if any changes should be made.  

I know there are families out there that have been doing this for a long time now.  Fighting this disease.  I wish I had a hint of where the end of it all is.  I suppose I get a little worn down.  You hear all the reasons of why its ok, but it doesn't feel ok to me.  I posted in the JM Mom's board something about listening to yourself.  If you think things are not right, your right.  It will all play out.  I don't care if Gary is running and playing.  I feel like its my job to keep it that way.  Conversations that end with, "well at least he is running and playing", I do find comfort in, but that comfort is short and sparky.  He still has a disease.  You might not be able to see it, and wonder what I am so upset about, because that is easy for you.  I see it.  I feel it.  I live it.  My tummy hurts.  So does my heart.  I do take comfort in God's love.  Peace will come over me when I let it.  I hear Him and feel Him and  He is there to help.  I take comfort in that.

More pictures from Make A Wish.  Anyone getting tired of hearing about it.  I'm not.  We received our professional pictures that Make A Wish came in and did.  They are amazing.  A lot of articles were done.  Their were a few things that were completely true but they did a fantastic job.  One of the things that was not true was the fact that Carpinto's Brothers (a local company who sells and delivers gardening and landscaping supplies and materials) delivered the play chips that went underneath the play set.  It is true they did, but Make A Wish PAID them for those wood chips.  They were not donated.  They actually were delivered and we had a small problem that I won't share.  I usually don't write letters to people but I have to say that I think I might let them know that they received quite a bit of local publicity from Gary's wish.  Maybe next time they might consider cutting Make A Wish a break?  : )  Anyway, here are a few of my favorite pictures I wanted to share.  Thank you Brian David Casey.  They are awesome.  I will treasure them always.   **Make A Wish called yesterday and wants to feature Gary's wish on there website**   ***Thank you to Apollo Sunguard, Dochnahl Construction, Rainbow Play Systems***    *****Thank you to our Make A Wish Volunteers who are amazing!  Ken & Cherelle did such a amazing job.  Cherelle and her husband were here working a lot of weekends.  Selflessly donating there time. *****


Monday, April 25, 2011

More for recording purposes..

Just to look at him right now gives me a feeling.  Not a good one, not a bad one, but one of restlessness.  I feel like I am on a little bit of a roller coaster.  I know we have been busy these past few weekends so I keep telling myself its because we are all tired out.  A four year doesn't get tired like that.  There is a look about his soul that seems tired right now.  Yes, I can see is soul.  I am his mother.  He played his T-ball game this weekend, (Saturday).  It took some begging to get him out there.   It was hard to decide if it was a social thing or if he truly wasn't up to it.  Once he got out there he seemed pretty good.  He ran the bases and had fun although he  put his hand over on his right leg at the front of his hip.  He seems to be fine when he runs but when he goes into a walk, it looks funny.  I know mentioned that in my last post but for sake of working it out in my mind.  We did easter eggs afterwards.  He has been very mellow.  It's is not usual for him.  That part drives me crazy.  Yesterday, after the egg hunt, he curled up in his Aunties arms and took a nice long nap.  He has been having coughing fits after he eats and his voice is hoarse.  It seems to have some to be hoarse a lot lately.  Someone asked me at the party if he had a soft voice because of JDM.
Gary (8) and his buddy Westly waiting on the buckets for their turn to bat.

Sunday, April 24, 2011

Putting it all Together

Crossing toe's, and now a slight limp, hip swing.  Nothing drastic but something I noticed.  When your rheumatologist calls you on a Friday night?  Rutty Ro.  I admit at first I thought she might be calling to talk about our orthopedic appointment from the week before.  She asked how he was doing.  I said pretty ok.  She said some labs are up.  I quickly filled her in on the "OK" part.  He has been using more effort on stairs, going up and down.  He has been asking to be carried a lot more than usual.  The day before I noticed he was limping slight.  It looks as though he has a little hip drag.  Yesterday at t-ball he was grabbing at his hip a little.  He runs pretty good but as soon as he walks it goes into a hip drag.  It's like a swagger.  A change.  I sort of kicked myself a bit.  Gave myself the "trust your maternal instinct" pep talk.  I knew it.  When his toes crossed 2 months ago, I kind of had a feeling we were in store for something.  So we are due in for clinic appointment on Wednesday.  Our rheumatologist wants us to drop in at the lab.  She is going to check his B cells to see if they are coming back.  Although we just ran another round of Rituxan in December, she still wants to see if they are there.  (I really love blogging, it opens me to my thoughts and makes things clearer).  Here is the problemo I have with that or concern.  So lets say his b cells are back.  She is going to want to run Rituxan again.  His toes started crossing in February.  I have to imagine that the weakness of the muscles started a little bit sooner then effected his toes, hence the constant complaints about ankle and knee pain.  Rituxan was last ran in December.  If it is or was or whatever it is doing now as far as working, is it now?  He initially responded very well to Rituxan, but like the Cytoxan, has it found a way around it.  F E A R   

Make-A-Wish Foundation: A wish comes true for a Black Diamond boy | Slide Show

Make-A-Wish Foundation: A wish comes true for a Black Diamond boy | Slide Show

Thursday, April 21, 2011

Infusion: Really need to look back and get the count on what number it is

Aprils infusion is down in the books.  I think that Children's secretly has kryptonite under their hospital.  It sucks mom's energy out.  Gary did well yesterday.  I decided to skip over the numbing cream for the IV start this time.  The numbing cream sometimes irritates him more than its worth.  We opted for a J-Tip start which is a numbing shot first then the IV.  We have been grateful, let me re-phrase that, Gary has been grateful I am sure to have the nurses getting those veins on the first try.  I know I am grateful because I hate see him going through it.  I liked my nurse.  She took the time to ask about Gary and how he was doing.  I just so appreciate that.  It's not a matter of I care if she cares, but its a matter of I know she can give better care if she is informed.  We got into a little conversation about keeping the blood pressure cup on, but no biggie.  I just need to make sure I communicate.  I told it her not one nurse as ever insisted he keep it on.  We have to keep him level, especially with steroids pumping in him.  She was kind about it, but you can't win with me.  I still will get irritated.  Gary turned his usual death white.  He complained a lot on the way home of needing throw up and having a head ache.  But as soon as we pulled in the drive way, he saw his Uncle Bill, his play set, and all was well in the world.  Then the steroid monster emerged.  Everyone bunker down.  He's here!  Gary's labs are holding steady. That's good.   It's not great because I have noticed changes in strength like stairs and pulling himself up into his car seat.  It has come with more effort and more sound.  Grunting and more effort.  Our clinic is next week.  I will get a chance to speak with our doctor about the orthopedic doctors report about his crossing toe's.  Sum it up, "I don't know" he said.  Even the nurse told me she got in there and read his report to our rheumatologist.  She came back and giggled.  She told me that is just what he said, "I don't know, all's we can do it watch it."   He wasn't sure if it is from JDM or what.  My favorite! The unknown and waiting!   Builds character right?   Gary is still continuing to have nail fold capillary changes.  When you can see if without magnification, that says something. We are still recovering from our Make A Wish weekend.  Still floating.   Now onto Easter?  Wait, not ready.  I need a vacation and money for it.  *Giggles*

Tuesday, April 19, 2011

And his wish is complete!!

What a weekend!  What a year!  What blessings.

I am just now recovering.  I would like to start off our "Make A Wish Weekend Review" by thanking the following.  Thank you to my family.  The Saas's, The Luddingtons, The Armstrongs, for being here pretty much all weekend and doing nothing by work.  The Luddingtons even spent the night of Saturday so they could be here at dawns early light.  We were all completely exhausted by days end.  But it was worth it.

It all started Friday when Carpinto Brothers delivered a large mountain of chips in our driveway.  There was some discrepancies involving the chips but I will not share.   (Ok so there was a little top soil or other material that was mixed in with the play chips).  But the next morning they drove all the way out to our house to convince us it was not what I thought it was.  So a little drama but we were happy that they guaranteed us it was just a very small amount of dirt.   Our family and neighbors came with wheel barrows.  It took us an hour to spread the chips.  That was it.  The Make A Wish volunteers were impressed with out quickly we got it done.  That's my family!

Sunday started early.  I invited 60 plus friends and family.  I was confident with my list because lets face it, people have busy lives and I knew I wouldn't get 60 people.  So no offense to anyone, but if you didn't see invite, you would not have come anyway.  I am the same way, lol.  I will be a little hurt if I don't get an invite but I know that with three kids, each of them going every which way, it usually ends up being a schedule conflict.  Just keeping it real.  I was completely grateful and amazed by the people who did come!  So thank you thank you thank you for taking the time to come and help our family celebrate this day.  Anyway, with almost everyone in my life I know coming to my house, well we had to get it cleaned up a little, make treats, ect.  My sisters worked endlessly.  On Saturday they even packed up Gary and took him to his first T-ball game while we stayed back and finished up with Make A Wish.  My head was all over the place on Sunday.  I was over stimulated and could barely stick with one task.  It was Gary's Grandma's birthday that day as well, so after the Make A Wish party, we also had to throw a birthday party.  My bed never felt so good that night.    Back to the events of the day:   8:15 the crew arrived to begin constructing the play set.  Uncle Bill and Uncle Ray worked closely with everyone to get it up in time for the party.  We had media coverage coming, we had the Fire Department, we had the Police Department coming......I literally need to take a break from typing this.  It's making my brain cramp!   Remember all the details.  But I refuse to leave out anything.   It's all about honoring the day.  I plan to include a video of the day.  Make A Wish had a professional photographer come and take pictures of everything.  I will wait till I get those so I can include it.  *Summer I did take video for you and my brother.

This is Officer Cripe.  After a lengthly conversation about Gary's disease and treatment, we discovered that his brother was diagnosed with Juvenile Dermatomyositis at the age of 5.  His brother spent over a year at Childrens.  He was treated by our same rheumatologists.  His brother is now a healthy 36 year old man with 2 children.  Serendipity.

The finished product.  

The weather sort of cooperated.  We had sun, hail, and rain.  But for the most part it was fine.  I think I will let my pictures tell the rest of the story.  My favorite part was when the Fire Department turned on there sirens and lights as they pulled up to our house!  Even our neighbors came out to look!  : )  So fun when there is no emergency.

In the News:

TODAY IS OUR 2 YEAR ANNIVERSARY.  April 19th, 2009 is the first signs Gary starting showing of JDM.  Ummmm   Shall we celebrate?

Thursday, April 14, 2011

Appointment *Shrug*

Got the big shrug.  "It's not a problem, it's a difference."  His bones are fine.  There isn't a lot of calcium that the doctor could see in his feet in the xray.  Toes crossing.   Dunno.   Ankles and knees hurting, ask the rheumatologist.  Got the big shrug.

Wednesday, April 13, 2011

Yay! Our appointment is here & other business.

We have our appointment today with orthopedics.  Why I am so excited I don't know.  I guess because when he complains about his ankles hurting, I feel bad.  I tell him to hang on just a few more days.  I tell him your appointment is almost here.   I just hope that I don't here, "he will grow out of it" or "sorry, nothing we can do".  Which may be the case.  If it is calcium causing the pain then the only thing we will be able to do is wait and see. I kind of wish we were able to check in with rheumatology as well today.  But our next infusion is the 20th.  Like every month, the closer we get to the infusion, the more and more small signs of inflammation show.  The day before yesterday he woke up with 4 very noticeable broken capillaries in his nail fold of his pointer finger.  It is nothing he hasn't gotten before but once again, it is just a sign that despite good labs, he still is showing process.  He has been on steroids for almost 2 years now.  I know it is not good for him to be one them for so long.  But I wonder if he needs to increase his dose for a little bit.  See if that helps.  

His appointment isn't until the evening so I will update when I get home.

*MAKE A WISH* is here.  This weekend will be the big party!  I will take lots of pictures.  If you live by us and are so inclined, please come and help our family celebrate and thank the Make A Wish Foundation for all their hard work.  We should be done building around Noon.  So any time after that : )  I have to say that I had read someone mention taking advantage of Make A Wish in whatever context.  Some kids with JDM have been denied because a doctor said it is not life threatening.  Doesn't matter.  I even had a relative mention when his wish was granted of being or taking advantage of.  I don't feel that way at all in my heart.  I feel that Gary has been through so much.  He still has so much to go through I'm sure.  Especially with showing signs of potentially having trouble walking.  And I am not saying Gary is going to die, this could turn off and he could be a healthy boy but with the loss of three teenagers over this past year, yes, my son deserves the world.   So thank you for celebrating with us.  I just wanted to get that off my chest.  We are so happy and so excited for him.  It's finally here.

So I am doing a fund raiser.  I am running in the Seattle Rock n Roll Marathon, FULL.  Wooo whoooo.  My second full marathon.  I am going to be selling my body.   UH WHAT!!???  Wait!   NO.    Not like that : )  but it does sound funny to say.   I will be taking donations for a space on my body.  Let me explain.  You know how at the grocery stores they ask if you would like to make a donation to whatever cause when your checking out?  Well you say yes and they hand you a shamrock or a heart or whatever it is that you can right your name on it or in honor of someone.  They then pin it up on the wall with all the other donations.  Well I am going to be taking donations to write a child's name suffering from Juvenile Dermatomyositis, or Myositis, or Polymyositis.  So lets say you want to donate $5.00, I will write a childs name on my leg to honor them.  Yes, I am still figuring out how I will get those names on.  It makes sense to use a sharpie because it is durable.  But I am exploring other options.  I usually write CURE JM all over my arms and legs but I thought this would be a fun way to raise money.  I will be emailing the JDM community to get permission to use there childrens names.  If I don't have permission, I will NOT write their name on my leg.  If I get good response, I am willing to use my arms.  BIG BUCKS, I will use my face : )   It's all for the cause. CURE JM :  )  Let me know what you think.

Wednesday, April 6, 2011

Famous JDM

This is an older one but I thought I'd bring it back.  Some of the Mom's were chatting about celebrity exposure for disease awareness so I wanted to share.


Tuesday, April 5, 2011

Appointment Moved Up

I had decided to try and get Gary's appointment moved up to see the orthopedic doctor.  I called and spoke with rheumatology since they have Gary's schedule.  The recommendation coming from our rheumatologist to have that appointment moved was needed as well. That was over a week ago.  I felt like a bad mother just sitting here thinking they won't call me back so what am I suppose to do.  She explained she hadn't forgotten it was that she hadn't heard from orthopedics yet so that was what she was waiting.  Ok.  I get it.  She told me as soon as she heard from them she would let me know.  So today I thought I would just try and help it along.  I called orthopedics and dialed into the scheduler.  Gary has an appointment on Wednesday, April 13, moved up from May 6.  We are also on a wait list this week.  If they have an appointment, they will give us 2 hours notice to bring him in.   I feel redeemed.  When Gary complains about his ankles, I am right on top of that.  Now lets see what we can do about getting those toes to uncross.

Monday, April 4, 2011

Make A Wish Weekend: Closer, closer, almost there!

It was a muddy, rainy set up this weekend.  Thank you to Grandpa Gary, Uncle Ray, and Brian & Chris from Apollo Sunguard for working so hard.  Gary was excited!  I think however, once he see's it all come together he will be over the moon.  Gary is doing very well after his infusion of pamidronate.  He seemed to recover.  He has gotten the occasional head ache but other than that.  I am not sure how long it takes to see if it is having any effect of the calcium deposits.  I can't find where it says that.   I would call the doctor and ask but I am pretty sure I will just get a "I don't know".   Here is some pictures this weekend.  April 17th is our Make A Wish party.  I am waiting to here what time and everything.  If you know me, and know Gary, you are invited!  I want my world there to help me say thank you to everyone who made this wish possible.  A lot went into it.

Make-A-Wish Foundation