Monday, November 23, 2009

Spinning Plates

We survived the week of conferences.  Not what I expected but my children were made in God's eye, therefore they are perfect for His plans.  I can't ask anything more of my children but to give full effort.  I can't ask anything more of them but to be kind and loving.  Bad news is they don't meet report card guidelines and testing.  The most wonderful news is that I was told they were good kids.  My sons teacher told me that is very kind.  She has never heard him saying or doing anything unkind.  Not that he hasn't mind you, for he is a child.  But to be told, sure he doesn't learn like the rest but his heart is good, well that just pleases the peach out of me.  He is tender and beautiful in every way that I could possibly want.  I look at him and still see my little chubby, bald, rounded headed baby.  So innocent, so pure.  I hope he stays that way.  Words don't come and go the way they do for us.  That makes him all the more however.  I compare it to being blind or deaf.  It has heightened a sense in him.  A sense of awareness.  Aware of his own ackwardness and vulnerabilites.  Painfully aware at times as he is not like the other boys, but wants to be so bad.  I wish I were weathly.  I would have him privately tutored.  I would find what makes him work and how I can help him keep swimming.  Although on a humanistic level he his flying free. Academically, not so much.   So when you go to say,  "hey my kid is gifted", I can only say in return, "so is mine."   If you know me even a little I really wanna say "yeah yeah psshhhh fiddle dee dee kiss it".  My sons teacher, she is hero.  I have heard so many different things about her prior to my son entering her class I was completely mortified he was placed there.  I even went with my concerns to the principal about the situation before school started.  Wow, did I learn a lesson.  She was tender and sincere.  Organized and willing.  I just enjoyed our talk so much.  McGuire and her seem to be a perfect fit.  

Ode to being a Mother
So in the middle of my intense conversation about how we are going to help my son, the hospital calls.  I had warned her they might because they had called early and left a message they wanted to talk to me.  Well the clinic does not ring direct.  You call leave a message.  They return your call.  Sure enough they did.  Ms. R was very understanding.  Gary's lab work from Friday came in with some low numbers.  His white cell count is lower than they expect along with another level.  This is from his new medicine cell cept.  I was told not to increase the dose as planned.  We go back in on Friday for another lab.  Depending on his levels they may add another medicaton.  The nurse urged and warned me to stay away from sick people.  With this particular level down he is more susceptable to bacteria infections.  So the simple sniffles could spin off,    you get the picture.  All mighty God's protection be with us!  Has so far : )  Praises!  I did ask the nurse if these certain levels can make you pale.  He gets that irrey white when he takes a nap.  Enough to make me panic and have to call a relative for reassurance.  She said no, that is hemocrit looked fine.  He did a have a few unusal fits where he got very agitated for no reason, well a two year old doesn't need reason but none the less he was very angry crying, and very pale.  Just keeping an eye on him closely.  Personally I think they have failed to realize that maybe the cytoxan is still hanging out in his system.  Or they do realize that but need to medicate further until his body stabilizes and get use to his new immune suppressor.  Good times.  We'll see on Friday.  So, off the phone with the hospital and back to conference I went.

We are gearing up for Thanksgiving.  I have a lot of cooking and preparing to do in the next couple days.  I have Grandma coming to stay with us so I need to go around prying the gumdrops off the cushions and get this place in tip top shape.

In February there is a benefit marathon/convention for the Cure JM foundation.  I am really considering trying to go.  We are blessed with a way to get there.  I just need to consider all the other expenses as well.  I really would like the whole Bradford family to come.  It is not just Gary that has been through it, we all have.  Although he gets A LOT more credit then all of us put together for all the needle jabs, ng tube insertions, icky tasting medicines, the pain, sleepless nights, and just being brave.  The marathon......hmmmm I think I might.  Twenty-six miles is a lot but so is not being able to walk and dealing with Dermatomyositis the rest of your life.  Even in remission, not knowing if it will come back.  Then when or if it does, starting all over again.   So am I proclaiming my intentions of this said marathon??,        almost.   Need a couple more days.  I can run two miles no problemo,   well sweaty and really talking to myself to keep going but I most certainly am capable.  Besides that it reduces the size of your hinney and it so good for you!  And just trying out my running legs, my hubby commented mine might be smaller.  LOL  sorry  TMI   So as long as I don't go into cardiac distress LOL.  

We keep close tabs on our celebrity friend Mason.  Mason we had the honor of meeting this summer at the concert.  Whenever we visit his blog my kids rush over to the screen and shout Mason!  The Smedley's link is on the right hand side of the page >>>>>> if you want to pop in.  Oh yes, and his Dad, Damon.  He is responsible for my attempt at running a marathon.   
Ye of little faith,  I hear your doubts!

Saturday, November 21, 2009

Still Good

Gary is still doing pretty good.  Last week I tried really hard to chase this rash down.  I even got on the phone with a doctor in Maryland to see what she thought.  She recommended a dermatologist.  I had called before getting on the phone with her to see if they could refer one but it didn't come up.  We were too busy talking about doses on his new medication.  I posted a few pictures on the board over at Cure JM  to see if any of the parents had any idea's.  I have a few concerns about active JDM rash.  Gary's levels are good and his energy are excellent.  Even if it is a JDM rash I wonder if there is much to do about it.  It really raged last week, but this week is starting to look better.  Once piece of advise someone gave me is that there son too had rashes come on go like that.  They are slow to go away.  Even if it was active JDM, his labs would have to reflect that.  Then I would sit here and wonder when the weakness is coming back.  BUT it is not.  The twisted world of having a child with Juvenile Dermatomyositis.  God is so good to protect Gary from all the sicknesses that are going around.  He is so funny.  I went to a midnight showing of New Moon on Thursday.  He was watching Calliou went I left.  He was watching Calliou when I returned at nearly 4am.  Poor buddy had taken a spill down the front steps.  It cut his knee up so he couldn't sleep.  Although as soon as Mama crawled in bed with him he went to sleep.  He slept till noon.  OK FINE  WE slept till noon.  AAawwww that was nice.

Like I said, which I am sure any parent can relate that has JDM.  How's is Gary doing? Great, he has a disease.  I know, I am bratty.   Yesterday we went to Childrens for a lab draw.  The kids had half day so they came along.  Oh joy.  Everyone looks at me like I am over populating the world.  We had daughters twin (Kapri, my best friends daughter)  with us as well so it just added to the effect.  They were running around putting on medical masks.  Squirting hand santizer.  If you need to make someone uncomfortable, let me know.  I will rent them out to you.  LOL  Just kidding. 

Looking Forward
I am looking forward to Christmas.  Not the money part but most definitely the decorations and being with family.  I am looking forward to Gary losing the steriod weight and the paleness from the chemo.  It freaks me out when he takes a nap. 

I have waited long enough.  It is time.  CHRISTMAS MUSIC is here!  Time to put the tree up as well.

Thursday, November 12, 2009


So we officially are done with Cytoxan.  Yes.  We have started cellcept.  Today we were so so happy to meet our friend Lynn for lunch.  I like him and so does Gary. 

Flu Shots
Yooooowwwwwiiiieeee that hurt.  How does my two year old do it?   I am still sore.  My neck even stiffen'd up!  Too think what my baby goes thru. I get a shot once! And I am all whiney about it : ( .  But I was talking to my soon to be brother in law.  He said his was sore for about a week. Makes me feel a little better.  I was not prepared.  I was prepared to get the kids vaccinated but not myself.  When they asked me, "will Mom be getting vaccinated herself", I freaked a little and thought I really hadn't prepared.  To make a long story short, they told me to calm down.   What do you mean calm down. I have had three babies, you calm down.  LOL   Still thru me off guard.  Sniffffff.   Poor Gary boy, to think he gets this once a week.

What I Look forward Too
I look forward to Gary losing the complexion he has right now.  It has always reminded me of the kid off of Pet Semetary after he came back. Think I have mentioned that before.  I had a small panic episode the other day.  He had started to try and take a nap in the car.  I caught a glimpse of him and the white irrrey look that we all normally get when we fall asleep,   well you can imagine ones look when they are taking a lot of different drugs, especially chemo drugs.  He looked like a ghost.  Reality creeps in on me after all these months as if a reminder or as if to steal my faith from right out from under me.  He just looked BAD.  There I said it.  No matter how hard I settle into this all being his normal, that makes no difference.  I can't  get use to the look of the chalky white he gets.  It really can be scary.  I had to call one of my sisters who talks me back down, gets me to step away.  Reminding me of everything he has been thru.  As if I forgot and we need to revisit each day starting at day one because I can hardly believe it.  I am so grateful to have that support system in my life.  Someone or actually more than one to say,  CALM yourself, we know, we are here, it will all be fine, we hate it too.  He is really beautiful.   He is a crazy beautiful.  Emphasis on the crazy as well which is such a mind game in itself.  One minute pale as if he is ready to be barried, the next,  tearing my house apart.   LOL.

Mountain Valley Heating and Air Conditioning
So I plugged this company on my Facebook.  I will plug it here as well.  They are awesome.  They have blessed me and the least I could do is try and bless them back with a little advertising?  So, if you ever have trouble with your furance or air conditioner, call  Mountain Valley Heating and Air Conditioning, 425-226-0080.  Ask for Erik.  Thank you to tears for blessing us!

Friday, November 6, 2009

Last Treatment

Today has been a day.  We knew it would be because it always is.  It actually started with a phone call from my bestest.  Her daughter had a seizure and spent the day at the hospital.    They are home now.  We did not have the chance to meet up with them.  I am glad for that.  Part of me was hoping to share a room though!  :)   Prayers for Kaylin are welcome. 

Gary is doing good.  I don't know what to make of his itching and irritability (well at least they don't) but his strength is great.  The doctors are thinking about this being the last cytoxan treatment.   This is good, and nerve racking.  I think it is nerve racking for them as well.  His levels are good.  He does however have elevated liver levels.  Predisone can cause that so they ran some other tests tonight to help determine if it is indeed from the steroid.  The rash on his face and on the inside of his hand that is not related to the disease, they think it may be yeast or maybe a form of eczema.  I asked about him being on steroids and the likely hood that a eczema rash would survive that.  She agreed it would not survive it.   I am not sure what to make of it.  It is spreading slowly over his face.  It is nothing dramatic but its there. 

My niece Bryanna came with us to the hospital.  Unfortunately they won't let her stay because of a recently changed  policy.  It is just as well.  She nearly fainted when Gary was getting his IV.  When it was all over I turned around.  There she was CORPSE color.  "What are you doing!?  Don't do that!"    All's I could think is that my sister is gonna kill me for not listening to her and sending her out while it was done.  LOL   Weenie.  One thing we learned, Bryanna is not cut out for nursing.   

As the rain pounds on our window and lightening dances across the sky here in Seattle, Gary and I will snuggle the night away in our hospital bed.

Thursday, November 5, 2009

It has already been a month!

Wow, I can hardly believe that the month is up. We are due in on Friday for Cytoxan and IVIG. It was a good month. My only complaints are some skin activity we have been dealing with especially at night. I started him back on benadryl at night time because if I don't he itches and tosses and turns all night long. He rarely does well when waking up from a nap. He wakes up with swollen lips and fingers that are red and splotchy screaming for a good hour. What does it all mean? I don't know. It means its better than muscle weakness? Does it mean we are just keeping things quiet? Does it mean if he were not on all these medicines he would not be in good shape. Who knows. I like that we have or are starting to get use to things. We are finding Gary's normal. We are finally accepting it, if that is at all possible. We are just thankful. Thankful because without God's protection and blessings, I can't even try to go there. We still have our swords drawn against the swine flu. The Halloween party was impossible. I thought I would be clever and send Gary away from his all the germs. He was heart broken and ended up dancing the night away. A friend reminded me that I must put my faith in God. Let him be as normal as possible. So true.

So Halloween is over (Yes! I only like halloween but I love Christmas), Christmas is coming SOON! Yes, it is snowing on our blog. We are getting ready to decorate. Music coming soon as well. No! It's not too early!