Coming Soon....

Gary has taken an interest in his blog......in the past I have used it for an outlet for myself.  As a mother, it served me.  It helped keep my thoughts straight......it released any emotions whether they were happy or sad.  It was also a great way of keeping track of how he responded to certain medications.      I think it is time for Gary to start contributing :)........it might take away from his video game time but I think it will be good for him and for others to read his point of view.   So Gary if you are ready this......get ready.  We can do it this Friday during your infusion maybe?    

2019 The Latest

O how I missed my blog.....
It’s not I forgot about it but after reading over a few entries in the past I thought wow, I hope he finds this useful when he grows up.   Not too mention any families that stumble upon it.

Let’s get caught up.  Ladies and gentleman, welcome to the PRE-TEENS.   Gary is 6.5 months away from turning 13.     The age of 12 as found us not exactly like any other twelve year old, but pretty close.   He even would rather hang out with his friends.   He is testing life.  Trying features out of his personality.   Anything from being a total jerk, to very polite.   He is on the go.  Physically he doesn’t match up to his age group but who does?   Some are bigger, some are smaller, some in between.    He is very social.   So social school work is just a small obligation he really isn’t obligated too.     Video games and phones are a big part of ever evolving social world.   Drives me crazy 😝.   He loves to wear lots of cologne and talks of piercings and hair colors.  (Over my dead body.).   I recently have returned to home so I get to be there with him more.   (I didn’t move out or anything just was working full time so we didn’t see each other much.  Infusion Fridays we often looked forward to because we got the whole day together.   Fortunately and unfortunately all at the same time, I have returned to being his full time Mom again.  A surgery on my knee to repair my ACL and meniscus trying to teach him how to ride a skateboard (one wheel) really changed the direction of my life.  A few things I’m sad to leave behind, but being here is what really counts for our whole family.  Everyone says I will be back......I know that.   But it won’t be in the same capacity as the old me.   I have another surgery coming up on the same knee which seems like a further set back but.....just
going forward. 

[Major shout-out to all Moms who work full time especially when there is medical worries present.  I am not gonna throw out the good ol’fashion “I don’t know how y’all do it” but I suppose I just did.  I know how I did it.  I largely ignored my life.  My children, my house, my family all together I only watched out if the corner of my eye.   I was terrible about a healthy balance.  It was only my fault.  My boss would have done just about anything for me but what it required was a whole lot.  I give it my all.  Hard working and dedicated, rug pulled out, I landed flat on my ass and I’m not even close to getting back up.].

So we have Gary’s 17 year old sister who just started her senior year in high school.   Gary’s older brother is 20, we see him her and there.  He lives with us part time.  Has a job and friends.   Gary made his way to 6th grade!   Middle school.......oh the anxiety and nerves he experienced.  But next week he will tackle his first full week and is doing great so far.

Medicine💊
So it seems the magic combo that has survived the longest so far (I think, I will have to look -we had a long run with Orencia-):    IVIG, Tocimizilab infusions......at home we are trying to get off of prednisone.   We are currently rocking a 2-2-1 pattern (milligrams per day).  So 2mg 2mg 1mg then back to 2mg.....you get the pattern.   It hasn’t been easy.    We made it to 2-1-2-1 but a few labs popped up and we went back up.   His calcium deposits are still slowly making their way out.....still.  Oh. So slowly.   His arms are left with scars but his appearance is way less noticeable then it was.....I will do another before and after post just on that very subject.  But his strength is great....his skin not much dermatomyositis at all.  I think his skin has a bit of scarring like he will look rashy but then it quickly goes away.  His nail fold capillaries are in recovery and have been for some time.  He is quite active.  He doesn't move the same athletic way as some of his sporty friends but I think he keeps up just fine.   And he may not be as tall as them but was he really going to be anyway?  We saw a doctor to possibly go on growth hormone (were talk ten plus years of steroids he has been on).  But has he has weaned off a little bit, he certainly has grown. 



After 10 plus Years....applying sunblock has not gotten easier! 

I use to have to chase him.  I would use my legs to try and keep him still.   Ok ok ok it has gotten easier but now he dislikes it in a more verbal way.   He claims I'm just trying to make him look like a clown.  Gary has to use a special sunblock because he has had past reactions to regular sunblock.  It is like my favorite thing to say.   He is allergic to the sun and sunblock.  I want to invent a sunblock mister....it goes over the front door.  It has a remote.  As he walks out into the sun, MISST   done      sunblock.     Oh and then their is his desire to be tan.    Come on winter!   I mean I imagine this picture is what it feels like to him.  Even hats mess up his hair.  Thank you teenage years.....I hope my son survives you.   Gary knows that he is very sensitive.  The minute he gets into direct sunlight, his face turns red and his lips and eyes swell.   Our relationship with his autoimmune disease and ten years of doing this......."I'm not going to the HOSPITAL with you!!"    Yep, Mom of the Year award right there.  I tell him over and over again.  I told him gently.  I have screamed.   I written it down.   I have everyone put it on, like when he was 4.  "See Gary, we all put the sunscreen on"   

😊More pictures from 2019

In April we got to visit cousin Reece in Florida.   Reece adored Gary.  They had lots of swim time in the pool.

Reece was so excited to swim with Gary, he didn't wait to change out of his pajamas.
   

Thanks to his Auntie and Uncle we got to experience Kiki's.  We traveled to the restaurant by boat in Miami!   

2018 May, 9 years, and DAMNIT

I have not even told him yet.   We just not celebrate 9 years of dealing with this and where are we?    Well, we have accomplished the following:  Learned his juvenile dermatomyositis is severe and aggressive.  We have learned it will drop you in an instant and break your heart.  

I arrived home Friday night.  I didn’t have the greatest day.   So much so I was even crying.   A lot.   My second line beeped and beeped and beeped and beeped.   I blew my nose, and told my Bff I would call her back because some is in trouble!  I was being sarcastic at the time.   Only to answer to my sons doctor.  I gained my composure and pretended I was just fine.  Of course at that time, my mental chalkboard had just been wiped clean.   On to bigger and things that REALLY matter to cry about.   I cordially said hello.   She greeted me back.  We went through the typical small talk.  Then came the gritty.    “I’m so sorry.  Your suspicions were correct.   Gary is developing brand new calcium on his neck.”      If I could express my devastation properly, this screen would suddenly go black.   Oh man.   I mean I believed so hard he would come off prednisone just fine,  he has not and will not.   The NIH was right.    He will never.   I hate! Hate hattte!    I feel like my life is one big trick.     But I could give a shit about what I feel.   It’s him.   I’m so sorry my son.  I feel like years are being shaven off his life.  I just get to watch it happen.  

His doctor suggested we run another medical he has had in the past.   I declined.   I said if there is any chance of him qualifying for a transplant, why would we risk damaging his liver further.  I declined a tour of the cancer care alliance where could possibly be done.    I was wrong.   I should have went to the appointment so they could have seen the disfigurement his disease causes.   My doctor tried to hint to me but flat out said it, “take him so they can see him”.   Deep breath 😪😰😭😢

2017 in Review

Hello! 
Well here we are :)!  It's 2018 and not once did I post in 2017.  I am no longer a stay at home Mom so things change with time and priority.  I have also learned to deal with Gary's medical condition in different ways at this point in my life.  So lets so over some stats........Gary is now 10 years old.  This spring will he his 9th Juvenile Dermatomyositis anniversary.  The last couple years have been better and better.  Gary is in 3rd grade.  He is doing pretty good.  Academically he is behind in school but makes daily progress.   Medication wise we go every two weeks to Seattle Children's.  Gary still has his port in his chest that they placed 6 years ago.   He gets IVIG and Tocimizilab every two weeks.  We are working still to get off steroids.  Currently down to 3mg.  Soon we will supplement with a different type of steroid as he comes off.   We looked into putting Gary on a growth hormone this year to get him caught up.  But the doctor said he was confident that his growth would catch up.  Gary's dermatomyositis has definitely left behind war wounds.  The calcium deposits have improved but them going away by themselves, surgically removed, and he has out grown a few.    The liver damage the medications caused we continue to keep an eye on.  We are vigilant for flares, although I admit my focus is a bit more limited.  So I have to be careful of that.  Keep up the good work, Gary!

Nov. 1st, 2016

I can't believe it has been an entire year  since I wrote on our blog!

Life changes, and things shift.  Finally.

Lots of bumps to get here, but we are here.  Bumps:   Liver complications.  Nodular Regenative Hyperplasia.   We handled it.  

An amazing visit to the National Institute of Health in Washington D.C.  Full work up with great news.  We were told Gary has received great care thus far from Seattle Childrens Hospital.  Over half of the calcium is gone.    We concluded with his psychiatrist because he has just made vast improvements with his anxiety because is health is doing better.

Currently  Gary still gets his infusions every two weeks.   He is very stable.   Next month we hope to start to taper steroids!!!   It will be the true test.

Last week we had a meeting about Stem cell transplant.   Very interesting.  Not on the menu though.

Gary is attending school everyday and he really loves it.

He had a "over do it" sort of situation with Halloween.  So much so that I got an email from his teacher saying he was worried about him because his legs and feet hurt.   He hobbled around all day.  I explained it is probably similar to the way a person shops till they drop.   Well he trick or treated till he dropped.    It's all for the candy.

8 years old......Juvenile Dermatomyositis 6 years old

I at least want to keep the faint heartbeat of my written account alive.........so lets check in.

The last entry talked about trying to figure out why he was so grumpy.  2015 was real rough on him.  So many factors that make up his health, tricking us here, scaring us there, but always works out.

The most challenging thing of all this and always will be is not knowing.  The unknown.  I guess that is a factor in anyones life.   But for families that are plagued by extra circumstances, like autoimmune diseases, that unknown goes a lot deeper.   Last year, not knowing why he felt so unpleasant.  So hostile.  A few months ago the question was answered.  The question was why his blood counts had been treading down for so long.........words like malignancy were mentioned.  Inflammatory storms coming from his immune system.  Sure enough there were no indications that nothing new was going on.  So they prescribed some iron.   It made a world of difference.  He often complained of tummy pain, and his stamina was limited.  Iron has turned it around.   We did adjust a few medications.  Dropped the Orencia and added Tocimizilab......this one has made a world of difference for his calcium.  They have been way less painful.   So we decided to try........for the first time in over two years.....the tapering of prednisone.    Our doctor said we are seeing the compounding effects of being on all these medications for so long.   That motivated everybody to try!   I can't say it is going smoothly.   Labs did come up after only 4 days of tapering but, deep deep deep breath.....and we are checking labs again tomorrow.   Fingers crossed.....he started physical therapy to help him regain some general physical fitness.  He also started flag football.   And although he did need to repeat his grade, he has been going to school full time......after a full day of school, he plays with his friends after school.   Just simply amazing stuff........we work closely still with psychiatry.  Our doctor not only coaches him and helps him deal, but she coaches me as well!  We have identify syndromes that have developed during his treatment.  It has been very helpful.

We did visit the plastic surgeon last week again.   We are waiting to be scheduled to have more calcium removed.  Although he has not formed any new ones.....the existing do not go away easily.  When they try and go away, it is not complete, and leaves him with holes in his skin.   We figured a nice clean incision and the all out removal of the calcium is better than the slow, painful, agonizing way they rid of themselves naturally.

To sum it up.......not to bad!   We are in a little bit a rocky pattern with the steroid taper but I will take that over adding and changing medications anyday!!

Special occasion!  Having a early breakfast at Denny's with the family.  Big brother was headed in to get braces put on his teeth.  So we all joined him in one last meal before the discomfort of his teeth moving around set in.

This is This, and That is That

Before it all started he was doing good enough to come down off his intravenous steroid dose.  I was stoked because I was feeling good about it.  Any symptom or change I could explain.  I want to explain.  Sometimes I think I make myself explain just to avoid these symptoms that are so minimal....

January..........wow he is grouchy.  He must be coming down with something.  Maybe a tummy bug.   End of January an infection on the top of his toe from a tiny cut.   Must be the antibiotics making him grumpy and causing tummy pain.  A stomach virus for a week didn't help.

February.......wow he sure is grouchy.  Not happy about life.  Only things that indulge him like food and video games make him happy.  Maybe he is spoiled.  Surgery to remove calcium for the first time.  Followed by antibiotics again for suspected infection of incision.   Antibiotics must be bothering his tummy.  He didn't want to eat steak.  Weird gestures when eating but not consistent.  No choking.

March.......so grumpy.  Infections of multiple calcium deposits that cause a whole lot of pain not from surgery, just all by themselves are surfacing.  More antibiotics.  More down time.     In the hospital for a week for pain...more antibiotics.  Labs elevated a little bit but explainable with what could be an infection.  Ran Rituxan because.......calcium is scary, painful, and deforming.  Our doctor felt it was time to make sure we just not sitting there while new ones could form.  But as far as we could tell they were not.

April....just when I thought I couldn't take it anymore.  The emotional distress this was causing me was really starting to wear on me.  Like my heart was being scrubbed on by a giant nail file.  The not knowing, not sure, some good, some bad.   Lots of missed school, lots of down time.  More and more complaining.  And another infection of calcium deposits to confuse thing.  This time we went without antibiotics.  We wanted to see if the pain it causes him is just the pain of the calcium exploding out of his skin.  Horrible.  So bad we have to give him narcotic and iv tordal.  Driving to the hospital every day to get iv pain meds.   We managed.    

To my delight, and anxiety.....my 40th birthday brought an amazing trip to Vegas with some of the most wonderful people in my life.  I reluctantly let go and went.  I was 2 hours away, a quick plane ride.  My husband was here to manage everything with my brother in law.  They did amazing.  My husband even drove him to the hospital for pain medication and then took him to a baseball game.  I had labs drawn before I left so they were ready for when we returned.  Our appointment was the day after I returned from my trip.

My suspicions I don't want to say have been right all along.  But finally......finally the labs are cooperating.  They trended up.  So much so the complaints of my legs hurt, my arms hurt, my everything hurts, my FEET..always complaining.....The tummy is the number one complaint.  So that is what we are going after first. Friday he will be put under once again, and scoped.  If the results of the scope are not good, it will take us in one direction.  If they are fine it will take us in another.  We want to try another medication....but we have too wait for Rituxan to kick in.   If it doesn't.......than this is this and that is that, when, and then......its all so complicated trying to figure it out.  I even considered some of it is psychological.  We even have a doctor for that.   But I still like the aggressiveness and knowledge of our doctor.  I like she realizes we can't afford "wait and see".  Gary immune system can be evil and up to no good.  No one wants to wait and see what it has in store for us next.

Best part is Gary came back the other day.   And by that I mean the happy go lucky child.  The 8 year old we have not seen in some time.....he was in a good mood.  He even went to school for half the day. I picked up, he looked exhausted, and heliotroped out but.....he did it.

I was so glad for Vegas....God knows when your about to crack.  It is hard to get yourself to stop fretting once you start.  Especially when it is driven by instinct of a mother that something is wrong!!  I came back, refreshed, renewed, and ready to keep battling.  I think Gary even enjoyed spending time with his brother and sister, and his Dad.  Not that we don't love love love each other.....but when someone has pain the way he has had for so many many months...it is such a strain.  An indescribable strain on both of us.  It exhausts us.  Doing constant wound care.  A few times we talked about going to the hospital so we could get the help of a nurse and not have to worry so much about every little detail.  But its not easy there either so we managed at home.  He is such a good kid.  We can't wait to come out the other side of this dark tunnel.  Every time we think we see that pin point of light, we seem to take a detour.  

Non highlight:   Poor Gary had an awful time getting his stitches removed.  So awful the nurse accidentally poked herself through her glove.  It is known in the medical industry as a blood pathogen exchange accident.  It meant some labs being sent to make sure no one has anything to exchange.  It never occurred to me to be worried Gary could be on the receiving end of that.  Chances are so very low, I will not give it another thought.  

If anyone needs me, I will most likely be at Childrens.   (But poor me was in VEGAS last week at this time.  Blessed!)