Saturday, July 31, 2010

Gary's Woman

This is our neighbor.  Gary loves her.  

Bring it Back

I was reading back in my blog trying to recall dates.  I ran across this post.  I love this picture.  The best part is that I tried to put these same underpants on him the other day.  The waist is all stretched out.  They don't stay on his hips anymore.  Not only did he shed the weight from lowering steroids but he has gotten taller.  Think I have started a new trend for my blog.  I will go back in my blog to grab pictures from the past.  Just to remind me of where we have been.  How far we have come.

Thursday, July 29, 2010

UPDATE

This update is brought to you by/for *Momo*  : )

The saga of the great taper continues.  After last weeks noticeable slow down, he has seemed to level out.  I imaging being on steroids all this time, his body has to learn to make his own natural steroid again.  So it make be a little rocky in the beginning.  He is doing better as far as energy.  His skin is a little red but he is an active boy.  I keep him layered in 70 sun block.  He has been refusing to wear hats suddenly so maybe its time for a new one.  SLEEPING   ugggghhhh I don't know what the deal is.   Or I do know what it is.  We have been trying to get him to sleep in his designated bed.  Up at 2am?  It's not going well.  But we shall stay strong.  That is why I slept in my daughters bed last night and he slept with Dad in our bed.  The moment the little bugger hits my sheets, he goes into dream land.  He loves my bed.  Who didn't love there parents bed.  It's the biggest and the best in the house.  Even to this day sleeping in my own parents bed is very nice.  The one thing I did see with Gary yesterday was him next to another kid around his age.  The were standing together at the window, and WOW could you see that the JDM.  The family does have beautifully pure white skin but Gary, standing next to this kid looked slightly, I don't know, tattered for lack of a better word.  He looked like all was not right with his body.  But we know this about him.  It just is eye opening when I get that glimpse.  The whole, but I don't look sick theory.  I don't look sick when I am not standing next to someone who isn't.

FRIDAY
Yikes! That's tomorrow!  We go down to 1 ml of steroids.  We will stay at the dose until we are seen on August 10.  We have a full day in the making.  We see a dermatologist at 8:45.  Gary picked up a skin virus when they started the chemo's.  I have never blogged about it I don't think anyway.   But he has a nasty case of molluscum.  It is a type of wart.  I know, VERY icky.  His body does not have the ability to fight these things off so they just keep spreading.  A few have become infected and hurt him very much.  We have to be careful when picking him up.  If he is playing and someone accidentally hits the infected ones, it sends him to his knees, crying and sweating.  They are harmless.  Most people they go away on there own with no treatment.  But, being immune suppressed, there is no ability.  I have been begging them to do something about for a year now.  Finally, now that he is in a better place, the rheumatologist mentioned, "they have a new treatment for these."  She got us in all in one day.   I l o v e h e r.   Because really at Children's, these doctors are specialists, wait lists are common.  So I will make to thank you for her handy work with the schedule.  After the dermatologist, we head over to the infusion center.  The doctor agreed to run over that day and do the clinic in the infusion center.  Must find gift to say thanks.   Back to the molluscum.  It says they are very contagious.  I pick him up all the time and have not caught them so I know it seems you should run the other way but really I haven't picked them up.  No one in the family has either so its all good.  I thought I read somewhere that if you have a had a wart before, you do have immunity to them.  But I could be wrong.  We take all the standard precautions.  The only one that is catching them his him.  I would like to apologize for grossing anyone out but I am not going to.  It is what it is.  Just another complication of all this.

My Running Blog
I did a 5k last Saturday in Enumclaw.  It was a great day of raising awareness.  I had not planned on running because this weekend Michelle and I are running in the Seafair Torchlight parade.  But my little sister and brother-in-law threw the money in my pocket and I couldn't resist.  There is a wonderful story on my running blog you need to check out.  Well more than one in that day.  A very nice lady donated to our pirate costume and my sister the hero who ran in the race.  Click Here

We Have a Guest

View 072900095...jpg in slide show
This is Whitney.  So little time, so many things to chew on.

We are babysitting my little sisters baby basset hound.  Cute!  Aaaaahhhh!   YEAH RIGHT  There is nothing cute about waking up to the sound of your running shoe being chewed on!   She was trying chew my ipod sensor off.  I don't find that cute.  But she is cute.  I am more than happy to do babysit though.  My brother-in-law is sick and in the hospital this week.  We so know what that is like.  She asked me to go to her house to bring her clothes.  Well that is my expertise.  Happy to do that task.  My brother-in-law had a  seizure of some kind on Sunday night.  We went to the ER with him.  They sent him home saying they could find nothing medically wrong with him.  GOOD SAM in Puyallup.   Yes, I will be naming the hospital.  We were all really nervous to take him home.  By Wednesday he was getting worse.  They were desperate so they returned to the general doctor.  That doctor sent him straight to the ER (not Good Sam).  He said he should have never been released.  His brain isn't getting enough blood.  The blood flow is being compromised by block veins that were damaged  from some previous injury or genetics.  Ugggghhhhh.  Scary stuff.  They are closely monitoring him to see if they body will repair itself or if they need to angio plasty those veins.  So crazy. Prayers are welcome.

Friday, July 23, 2010

Trying to let it not get me.....

It would be the taper. We are in the second week of the Great Taper. We went down from 2.0ml to 1.5ml's today.  Suddenly anxiety is kind of nudging me.  We went to the mall.  Did one lap around.  He asked me to pick him up by the time we got around, which may be normal for any three year old but he isn't all that normal.  He let his body relax as I carried him out to the car.  It didn't feel right to me.  His sudden lack of energy.  I quickly played back in my head the medicine I had given him hours before.  Did a mess up and give him a hydroxzine which is like benadryl.  No.  No, I am positive I didn't do that.  He slept on the way home and is still sleeping.  So we will just wait it out.  I am sure he is fine.  I just don't want to let the possible in.  Now if he keeps me up tonight because of this long nap, well then, it will be a long night.  I never deter naps.  Sleeping is good.  He has been having trouble sleeping lately.  Lack of sleep could be catching him.  He has been a tiny bit redder than last week.

Crossing that bridge over the river of prednisone.
 bigstock_Bridge_1699524rainfores-1.jpg Forest image by PinkMusic16
Holding on tight.

Thursday, July 22, 2010

www.garyvsjdm.com

We're back up and running.  No worries if you got a note from me saying I have switched addresses.  You will just be redirected.  Sorry about the inconvenience.   Sheeww!

WOO HOO

Please stand by!  I had or have 19 days after the expiration of my domain to get it back. I got it.  I am just waiting for google to send me an updated password to load it.   Hopefully it will redirect back to www.garyvsjdm.com.  Thank you for your patience.

Monday, July 19, 2010

Technical Difficulties

It was brought to my attention this morning that my blog was being redirected.  My domain name expired and it was snatched up instantly.  So I have temporarily renamed it back to the www.garyvsjdm.blogspot.com until I can figure something else out.  In the meantime, I thought it was malware from one of my gadgets and deleted them all trying to fix it.  NOT FAIR BLOGGER!  You could have warned me.  I have had that website name for a year now and you gave me no chance to renew it.   So if anyone asks, I would appreciate it if you could help me redirect them to my blog.   Just add blogspot onto garyvsjdm.  Sorry about that.

I mentioned my first triathlon JUMP TO MY RUNNING BLOG to see how it went.

Friday, July 16, 2010

Clinic Appointment

Ladies and Gentleman, Welcome to the GREAT TAPER.

Labs are good.
Strength is good.
Skin is better than it has ever been in a year.

Our schedule includes the following.  Today we decrease the steroid to 2.0ml.  That is down from 2.5ml which was the start of the taper 4 weeks ago.  For one week he will stay at 2.  The next week we go down to 1.5ml.   Then the next down to 1ml.  She wants to see us back in 4 weeks to see how he is doing.  

I am not nervous this time.  I am some anxiety in the back of my head but I have a really good feeling about this.  I wanted to jump on top of Dr. E's head yesterday and wrap her in hug and scream, "finally!".  After a year and 2 months of aggressive treatment.  What a ride. Ok I admit.  If we happen to have a glich, my bubble may burst so I may be setting myself up for that but I have a lot of confidence in my bag.  I just have a really great feeling about this.  I know we have a long way to go before we party, but maybe a mini party?  My heart is doing a happy dance for the first time in over a year.  There was a little thing we are keeping an eye on but I am so not worried about it.  He does have a few funny feeling pebble like bumps in his chest.  We suspect calcinosis.  But there is nothing they can do for it if that is what it is.  It's not confirmed.  He is doing so well even if it is, we will deal with it.  The doctor asked if I was going to put him into preschool.  She said he certainly is physically ready.  She was encouraging though.  She expressed concern with him being immune suppressed but also realized he is ready to go as well.  I told her I am avoiding it because it is a hard decision for me.  Preschools are a breeding ground for colds and all sorts of ickies.   I have a few weeks to decide.  I don't know.   Gary is doing well and I want to keep it that way.

Yesterday I had NO FUN sitting in Seattle's traffic.  I will post more later about that.  I have pictures.  I wanted to share our scenery.






















Ok I am off for the day.  A friend of the family lent me her bike for Sunday's race.  It's a speed bike.  I am a mountain bike girl so must practice.



Wednesday, July 14, 2010

Infusion Today

Gary's infusion went smoothly today.  Excellent nurse who had everything in order.  She had everything rolling the moment we walked in the door.  It's so nice when they are on there game like that.  The one thing she didn't do was ask questions.  Usually if you are about to administer drugs to a person, especially a child, I want to know how they are doing and why they are getting the treatment just so everything jives.  That's ok though.  I knew.  Everyone is different.  Gary's anxiety is mounting each time now.  So I am hoping that tomorrow a decision is made to start spacing these out further apart.  He was delighted that Elexis, his 8 year old sister was able to tag a long today.  I was a bit annoyed.  My daughter is my little Momma.  She often speaks out loudly, "it's ok buddy."  She even would run to get the nurse if the IV pump went off.  "Excuse me, are thingy is going off."   It's very cute but sorta my job lol.   Gary fell asleep almost instantly once the benadryl hit his vein.  IV went in the first time.  Last month we ended up in his foot.  But I went back to the numbing cream and wrapping his arms in warm blankets.  I was starting to consider having a port put in.  I have decided that if for some reason he turns in another direction and requires more frequent IV's then I will insist on a port.  But right now its looking like we could start heading away from that.  I listened today to few kids getting there ports accessed.  Screamed just as loud.  One child's couldn't be accessed for some reason.  Those were some loud tears.  Brings me to tears.  I am not even there Mom.  Several times I found myself wanting to put my head between my knees and find a happy place.  The 2 and under age group is especially rough.  It doesn't seem to openly effect Gary.  I think he is glad his is in and thats not him again. I could not wait to get home today and get some training.  But the hospital has kryptonite underneath it or something.  It sucks the life right out of me.  I could barely stand up this evening from pure exhaustion.  I was really looking forward to some training.  : (   No go.

Tuesday, July 13, 2010

No Posts?

Now you know when you don't hear anything that is either good or bad.  Well its GOOD this time.  Gary is doing excellente!  We have an infusion tomorrow.  Yuck. But since he is doing so well, I am looking forward to our clinic appointment on Thursday.  I am hoping we can go down on something or maybe space an infusion out to 6 weeks instead of 4.  He has been tolerating the sun well,  with as much protection as I can give him of course.  His skin seems to be returning to a normal state.  He has a few small area's, like his arm pits and little bit on his tummy and chest that show signs of vascular damage or activity but his strength is 99.9%.   I am feeling over the moon about all this.  I mean its just break down and cry pure joy.  For a whole year, I just wasn't sure. I wasn't sure they were going to be able to knock it down and keep it quiet.  There is a whole new confidence I have now.  I know we still have a long way as far as getting off medications which is the true test.  But if it wouldn't be too much to ask, lets pop the cork on a mini mini bottle of champagne and give a toast to.....you guessed it.......my friend Rituxan.  We will have labs tomorrow so I suppose we can hold off on the toast until then just to be on the safe side.  In the mean time, here's too the climb.


Forth of July
I hope everyone enjoyed the holiday.  Ours was great.  Cold but good.  Gary really had fun.  We went and did some camping with Uncle Bill and Auntie Alyssa.  We rode our bikes, played games, roasted hot dogs and marshmellows.   Gary's appetite as been really crazy lately.  We are talking non-stop eating.  I am staking claim on that he is growing and growing.  Sure, he still on steroids but eating is good.  It's healthy.  If your eating, then he must be feeling fine ; )

Make-A-Wish Foundation
And back in the blog news is Make A Wish.  I know I mentioned it couple months ago that Gary was approved for a wish.  Well it looks like sometime this week or maybe next that wish will be granted.  Gary will be receiving a sun covered play system in our backyard.  We took a little time to really search our heart and our minds when making this wish.  Essentially it feels we are making the wish for him.  So we had needed to make sure that it was the right way to go.  Our thoughts were, what if one day, when he is older, there is something he can verbalize that he wants.  But we came to the conclusion that not only for his protection, but he will have a blast on it.  The system is being donated by Rainbow Systems out of Spokane, WA.  The cover is being donated by a company in Ohio.  We are excited for him.  I will keep you posted of any activities or parties surrounding this event.  

Make-A-Wish always bring present and goodies.


Other Happenings......
My nerves are kicking in.  I am registered for the Seafair Triathlon coming up already on Sunday.  Why do I get myself into this LOL?     Oh yeah,  because I can.  Jump to my Running BLOG.

Thursday, July 1, 2010