Friday, December 28, 2012

Battle of the Medications

Our monthly infusion was scheduled for the 26th this month.  It was a little hard packing up and going to the hospital with fresh new toys, and clothes stacked in our bedrooms, waiting for us to play with them.  But it was better then being there Christmas day.

The clinic was quiet has a mouse.  Gary and I sort of enjoyed it.  We were able to report to our doctor that things were fine.  Nothing had changed which means Gary is holding.  Doing well with strength.  Tiny little things that can be dismissed.  Skin rash, looks a little better.  Nail folds, if I can't see any changes then I say thumbs up.  The doctor didn't throw a party over them.  I asked how they look, she shrugged and said the same.  Well, ok.  I am fine with that.  Reviewing quickly, last month we stopped Cytoxan, started Abatacept/Orcenia.  We had tried in November to go from every 7 to every 10 days between steroid infusions.  That failed.  So we went back to every seven with the start up of Orencia.   The doctor decided to tweak a few of his support meds.  We give him ceterzine at night for itching.  She wants us to switch back to benadryl.  She also wanted to switch his tummy protector.  Ranidadine to Omeprazole.  The reason was she wants to one last time target the hoarse voice.  This has all been visited.  This has all been done before but I thought, why not?  I suppose I feel a little bit cynical.  My feelings at first were ambivalent   But with my  sleep deprivation alleviated, I am flipping between well this is dumb and why not.  But in the big picture, meeehhh, fine.  Lets do it. Fine.

We were able to do a CMAS test.   We had one done months ago in the middle of a long, drawn out flare.  His score was 32.  He improved all the way to a 38.  This is out of 52.  But given his age they say that is more out of a  45.  So that is good.

8pm
There is one thing that you don't want to see.  Doctors in your hospital room at 8pm, the day after Christmas.  Labs came back surprisingly higher.  His LDH doubled.   700 to 1400.  A few other enzymes are creeping up.  We were scheduled to come back in January for another round of Rituxan.  That was suddenly moved up to Wednesday of next week.

We are upping methotrexate again.


Monday, December 3, 2012

7 to 10 day taper, NOT A GO

Ok.  So, that didn't work.

From every seven to ten has been stamped FAIL.  It failed not by labs but by calcium acting up on his knee and heliotrope rash coming in on his face.  I had been calling the doctors in between the ten days.  Explaining what I was seeing. The doctor I talked to is so awesome.  She listens to my every word.  We were both curious to see what the big wig in charge of Gary's treatment would say.  On Thursday, during his clinic appointment, it didn't take long.  She said we have all been patient with cytoxan.  It was time to move on.   So, cytoxan, its not you, its Gary.  You have just grow apart, again.

MIXED EMOTIONS
Wow, after Thursday/Fridays infusion, am I glad to say good bye to cytoxan.  I didn't realize just how bad the side effects of cytoxan are for Gary.  I guess because he had gets IVIG with it, I thought it was the combo of the two.  Our new flavor for the next couple months, Orencia.  Sounds like a powerful greek goddess or something.  Also known as abatacept.    No idea if I am spelling that correctly.  What I like:  30 minute infusion, not many side effects, well not like cytoxan.  Biologic drug that is given to patients with rheumatoid arthritis.  Stops the destruction of joint damage.  Ok, so right off the bat I think, well Gary doesn't have joint damage per say.  He does have large amounts calcium in his joints.  So if you consider that damage well then yes.  But damage as I understand is erosion of the actual joint.  But at the same time, I can see what we are going for here.  We are looking for his pathway.  Where is Gary's immune system is his juvenile dermatomyositis coming from.   Orencia targets Csomething and another Csomething.  It is a costimulation modulator.  I hate to say it, but I just drooled because in trying to understand that I forgot to close my mouth.    I do know that I don't like the whole RA thing because that is not what is BUT, I do have it in my genes.  A great grandmother with severe RA.  Hands curled in, the whole shaabang.  Another thing I liked about it, he felt so very great coming home.  Usually he is screaming, close to puking, and feels not to great.   So amazing to walk out of there, although rashy, feeling normal.

I hope this Orencia is strong enough to fill cytoxans shoes, however.



BACK IN THE NEWS
They brought back Pamidronate.  They gave him a break from it for a couple months.  But since he still on steroids at a higher dose, pamidronate it is to help prevent bone loss.  I am all for it especially hearing about our friend Aiden who suffered an injury that turned into needing a bone replacement in his ankle.  Like, he needs a donor bone sort of thing.

SEVEN
Failing the every ten is back to every seven.  OH my STARS I thank God we put that port in.  Amazing how He knows what you, and your children will need.

CALCIUM
Gary's elbow looks better each day that goes by.  He does have a new trouble spot that we are keeping an eye on.  Well, it is not new but it the calcium is coming out enough now that it is becoming a open wound.  It is not huge but its location is bacteria prone, annoying, and not sure as an adult if I could handle it.  It is high up enough he at least isn't forced to sit on it.

KINDERGARTEN
Gary has been able to attend school 31 days out of 51 day as of a few weeks ago.  Naturally he is a little behind.  He should be better with counting, sounds, and using more expressive story telling with his pictures. He has a wonderful teacher who is patient and kind.  We are working with him at home the best we can.  He will get it.  I know he will.

FAMILY
We had a good Thanksgiving this year.  We were so happy to have family visit from the east coast.  Uncle Bill's family from New York.  Gary was especially attached.  He enjoyed just being around The Saas Grandparents so much.  We cannot wait until the next visit.

Our family is enjoying the what looks to be the last set of holidays in our house.  We have been so unbelievably blessed with the situation of having family right next door to us during these past 7 years.  Especially during these past years of Gary's illness.  To be honest, only God knows how we made it financially since Gary's diagnosis.  But we know everything happens for a reason, and He is already taking very good care of us.  We will miss our neighbors so very much, but know they are still nearby.  I don't think there are words to describe just how many wonderful memories we have made with them (my sister and brother-in-law, my niece and nephew).  Not many Aunties get to see there niece and nephew everyday.  Get to see them grow up and be apart of their life.  We are being careful to give all of our children the extra hugs and kisses through this change.  Assuring them it will all be alright.  Telling them that this is apart of life, and nothing stays the same.  Gary especially I think looks to his older siblings for guidance.  I think when we finally walk out that door for the last time, it won't be as easy as I am trying to make it sound, but it will be ok.  *O and just in case anyone is wondering, Gary's Make A Wish is coming with us! We are not leaving it behind*

Now, onto keeping my house clean, like ALL the time for strangers to come walk through it.  I can run twenty six miles,  I can certainly keep a house clean with three children and a dog.  *Gulp*


Monday, November 12, 2012

10 Methoprednisone is a GO

It was a little rough in the beginning.  I even called rheumatology to talk about how I thought he may not be tolerating the every ten days.  Trick or Treating he barely made it back to the house.  He limped in and practically collapsed on the floor.  He said his legs hurt.  His energy was low the next couple days that followed.  I decided to call them on Friday just to let them know.  My doctor is awesome.  She is patient and kind.  I was happy to call back on Monday to say, "nevermind"  : )  

I think Halloween was an overdue.  We went to parties and had our own.  Constantly on the go.  This time it was just that.  I do think he did respond to the spacing of the methoprednisone infusions, but his body I think was able to level out, stabilize on its own.

His nail folds are doing something weird, but I don't think it is from dermatomyositis.  If it is, it must have something to do with the recovery or healing of the veins.  He has been chewing on his nails quit a bit.  I wish he wouldn't but he does.  Bright red bumps and skin peeling.  I am not concerned.

His skin looks good.  Calcium deposits have leveled out.   The same.  Some have gotten smaller, some have got a little bigger, some are the same.  His elbow is now closed.  We have been not covering it.   It does get irritated around the edges sometimes.  But calcium "crusts" out of the wound.  After a shower, it is rinsed away.  He has one in his bottom that is still there.  Slowing changing.  Not doing much.  As long as he doesn't complain.

Kindergarten is going well.  Slowly catching up on missed work.  That has been a challenge for us.  It is hard for a Mom to make your baby do something they don't feel like doing at this age.  But I am learning, be tough, and so will he.  

Sunday, October 21, 2012

October Fun

350mg Methopred Infusion once a week.
Physical therapy once a week.
Took care of that limp.
He is still feeling the steroid effects.  Big time.

We are contending with a stubborn ear and sinus infection right now.  2 weeks of augmentin, with a move on to a Z-Pac and we will see.

"This is the best I have seen him look".    Do you know I have heard that so many times from the doctors.  You look good too, doc.  And don't even have millions of calcium deposits or are recovering from a tough couple months.   Yes, they are right.  But I really being the one that points out the obvious, reminds the masses, WHY he looks so so so great.  Don't forget,  the big cushion of steroid we have dumped into him over that past three months.  

On Thursday when we checked in, it was our last day of Augmentin.  He didn't even make it through the 2 weeks of being on that.  We still had one more day of it.  But it obvious he wasn't right.  He wasn't feeling good.  He seemed not right.   He seemed red.  He seemed more rashy.  I don't know if the infection in his ears is triggering that or what.  But that will soon be taking care of by the z pac.   Hopefully.

The Plan
So the plan is to proceed with Cytoxan.  I don't know for how long.  Can't say I like it.   But at this point we are playing by the rules.  MOVE SLOW.  He is stable.   So no one move to fast to spook JDM.  We are spacing out the methopred infusions every 10 tens, instead of every 7.  Labs are great.  Strength is 98.9%.  Rash, pretty good.  Nail folds, excellente compared to the past, calcinosis, no change, nothing bigger.  Elbow is closed.   Still healing.   That has been a slow process.  

Our infusion was a little rough.  He ended throwing up at the end of IVIG and got red rashy, complained about his elbow.  I told them to give him more benadryl.  More zofran.   He slept into the evening, then we were able to finally go home.  It is so nice when you get your own room.   And because of last months mistake, they made it up to me.  My favorite nurse, my own room.  

Thursday, October 4, 2012

October

That month flew by, didn't it?

We are continuing on forward with the plan.  Methopred Infusions on Wednesday.  I am thinking that if we keep doing these, need to have them switched to Friday.  He needs about two days recovery time.

Gary's elbow is still healing.  It finally stopped drained last week.  We currently keep those band aids that form a bubble around the wound.  I am not sure I care for those but we will watch closely.

School has been a hit and miss.  Mostly miss.  I had a meeting with the teacher, speech, physical therapy, and counselor yesterday.  Nothing but wonderful.  I showed up with no make up.   It is my warrior look.  The school is accommodating, supportive, which pleases me.   I asked about him and attendance policy.  They assured me there will be no issue.  I do hope after we gently pull away the pulses, he will miss way less.    A low white cell count from the Cytoxan came back this week, so we went with caution and kept him out until it came back up.  We checked yesterday before the infusion of methopred.  Problem is the methopred and methotrexate make him feel sick so, another day.  They also had me stop an antibiotic because they believed it was contributing to the lower count.

I want to thank the unknown person who sent our family that wonderful gift in the mail.  I hope you know that you blessed our family in our time of need.   Making ends meet seems to be getting more and more difficult.  We had hoped things would be getting easier, but they are just not.  Because of you, I didn't have to worry how I was going to get Gary to the hospital.  We live 40 miles from the hospital so gas starts to become an issue during certain times in the pay period.  I pray blessings 10 fold over you and yours.  I know there are going to be changes coming for our family.  But my job is to make it as easy as possible on the kids.  Change is never easy, it is just a life lesson.  We have wonderful friends and family around us who keep our world spinning.  

Baltimore
I am heading to Baltimore next week.  Once again, ask and you shall receive.  Friends and family are making it possible for me to attend the Cure JM Conference in Baltimore.  I am excited.  A little nervous to leave Gary but he is in good hands.   Running the full marathon on Saturday with a few of my Cure JM Buddies.  I am honored to be running with my Blue Angel, Kelly.  She was there when I crossed the finish line in Austin in 2010.  It is going to be a great time.  The foundation is working hard to meet our fundraising goal.  I have received some pretty fantastic donations!  Thank you to all.   Donation Button over to the side bar>>>

Friday, September 21, 2012

Enough

I think I am officially burnt out.  I am burnt out on all of it.  Funny thing is, this is something you can't take a vacation from.  I feel so drained but want to scream.  I am so glad to me done with monthly infusions until next month.  We are still heading back once a week for methopred infusions.

Wednesday we had our clinic visit and admission for infusion.  We were just there last week and the week before.  And the week before that.  So little to no changes to report except for one.  Limping.

F1
Our main rheumatologist came in but it was fast and brief.  She said it was because something was tight.  Could be.  But confuses me the most is last time this happened, or when it happens, it has been labeled hip weakness.  So you can see why it that can be a bit tormenting.  It torments me because if I think it is weakness then what am I suppose to do about it?  Ok fine.  Something is tight.  He will be getting back to physical therapy twice a week then.  He obviously can't go without it.  We stopped it because of school and infusions and appointments.  It was hard to fit it in.  Our physical therapist agreed that we should let him get use to school.  But with the elbow, extended stay at the hospital, coming back week after week he, he hasn't even had a chance to do that.

F2
On Friday the rheumatologist called and said they wanted to start him on bactrum.  I was in the car driving to the hospital for a dental check.  I heard her say 4 times a day.  I asked her to call it in to the pharmacy so I could pick it up after is dentist appointment.  We would have had to wait 2 hours for it.  I have spent so much time there lately I was not up for it.  I knew I had some bactrum from something awhile back.  I did!  So Monday and Tuesday I put it on his elbow wounds 4 times a day.  I stopped by pharmacy to pick up the fresh tube on our way to being admitted which was on the same floor.  As the pharmacist brought the prescription  from the back I gasped.  I asked her what is that?!  I asked if she had the right patient.  It was an antibiotic.  Apparently they wanted him not on a cream but an oral antibiotic. An anti viralish sort of medication.  With the extreme immune suppression he is on, a safeguard of sorts.  Ummm.  Oooppsss?

F3
So why the F's.  F sounds for frustration.  I truly feel sick from the amount of frustration I feel.  Whether I caused it or the hospital or whatever.  This admission for cytoxan, and IVIG, went.  In clinic it was just basically an overview.  What came from it was this plan:  If he is doing well, everything stays quiet, and we are liking what we see, then we push forward with continuing cytoxan and IVIG.  The first move we make is to slowly take away the weekly steroid infusions.   Go from there.  IF he doesn't do well, continues with signs of disease activity like muscle weakness, more calcinosis, rash activity, then we will write down that we gave cytoxan a good try and switch up treatment.  The treatment they want to give him is Orencia.  Orencia targets calcium process as I under stood it.  Ok.  It's a plan.

F4
The infusion itself did not go well.  Well, from the over all health of him feeling his typical it did but a very curious thing happened.  Back on June 19th is when we found out about our buddy Mason Smedley.  It was that very room I sat in complete grief and anguish, mourning.  That night a mistake was made.  I had fallen asleep because of pure exhaustion.  I did not over see every medication.  The nurse who administered the IVIG infusion did it at full rate.  Why is this bad.  Gary has had reactions and even has been labeled "allergic" to certain brands of IVIG.  So to be very careful we always run the infusion at half the rate.  It works very well.  Minimizes side effects like headaches, nausea, tummy pain, and the over all ill feeling. It has worked great.

We were put in the same room this time as well.  The Cure JM Foundation was in contest on facebook for win grant money.  I was following it closely.  So after getting Gary's port accessed (which went amazingly well) I took a minute to check in and see how we were doing.  The Smedley Family gave the foundation a precious gift.  They posted a very private photo of Mason on his final day here on earth, and asked everyone please vote.  I cried.  It felt so weird to be in the same room,  the same day of the month  (19th), and looking at those pictures.  What do you suppose happened again?  It happened AGAIN.  I fell asleep.  I did wake up like 5 times that night to help him go to the bathroom so my body was aching for sleep.  Finally around 4am I slept.  I was in and out of it but officially up at 8am for rounds.  Talked to the doctors, then settle back in the finish the rest of the day.  Suddenly I heard the nurse say he didn't need vitals done anymore to a cna because his infusion was done.  My heart flopped.  "What infusion is done?".   She was aloof and seemed too act clueless.  "Oh, um, the IVIG."  She said with a cheer and tried to be confident.  I quickly shot her confidence full of holes.  "What time was it started??".     "5am".   To my horror I looked up and saw it was only 9am.  The IVIG at half rate to minimize the side effects and protect him against allergic reactions was suppose to run over 8 to 10 hours.  I fired question after question.  Her only answer was, "I don't know, and I wasn't told".  I began to cry in frustration.  "I can't believe you guys did this again."   I backed off and followed it with, "I am sorry, I know you are not responsible for this."   Later however, I thought she was.  When she came on shift she should have caught the error because she started at 7am.  The IVIG was running at the rate under her watch.  I pulled the blanket back, and under neath it was my ghostly white chubby little five year old, sweaty, but sleeping.  Nothing could be done.  I felt bad for the nurse.  I felt bad for me that I let if happen.  Most of all, I felt so bad for him.  He woke up about 15 minutes later.  Voice groggy, needing to pee.  Our neighbor's family came to visit, so the happy sound of family reuniting turned into what sounded like a cocktail party.  I so truly wished he could have just kept sleeping.  Gary refused breakfast.  He intermittently kept gagging has if he the nothing that was in his stomach, was about to come up.  The resident doctor came in, sat down to apologize.  At that point I didn't want to talk about it.  I didn't want to discuss it anymore.   It was just has much my fault as it was there's. But of course, YAP YAP YAP. My favorite was, "good thing he tolerated it."   Go away from me.  I had them run zofran through his IV which helped a lot.  It perked him up a little.

F5
So they were ready to discharge us.  I told them no.  We had an appointment at 3pm on the other side of the hospital.  It was purposely planned that way.   The appointment was with plastic surgery to look at his elbow.  We sat there all day.  He slept for a couple hours as much as he could.  That particular room, because of its location (in front of elevators, nurse station where everyones call light go off) sound more like a carnival then a hospital.  When it was time to head back over to clinic for the plastic surgery appointment, he could barely walk.  His limp was pretty bad and he was so very very red.  His arms were red.  His legs were red.  His little face was red.  He was quiet.  I had my hands full of all of our stuff, so I could not carry him.  I asked if he wanted me to get him a wheel chair, he said yes.  I paged our nurse.  She said sure.  I watched her step into the hall, look up the hall, down the hall, then say, "oh I don't see one".  I shook my head and said, "baby you are just going to have to walk."  I told him I would sit and take breaks if he needed.  The nurse saw him take a step and wince and get woosy.  She got on her phone and said wait I have someone looking!!!   I said, "nevermind".  Done.   We made it.  The more he walked, the more he once again perked up.  At clinic we checked in right on time.  Gary layed in the waiting room.  45 minutes later they finally came and got us.  I was so close to leaving.   I could not miss this appointment though.  OH thats right.  I could have!   She did NOTHING.  She didn't even take off the bandage.  Thank you.  Thank you very much for having us wait which put us in rush hour traffic.  It ended up taking us two and half hours to get home.  They just want the hole to close on its own.

I am tired, and just so burnt out.  I need to find my reset switch.  I only feel worse today.  But you know what the good part is?  This isn't about me.  It is about my son.  This morning he woke up cranky but more or less good considering.

Saturday, September 15, 2012

Light and Dark

Elbow.  Doing.  I feel like I am doing one of those poems on stage back in the early 70's, when the whole beatnik groups exsisted.  

Confession.  So after the whole elbow thing, I think I may have slipped into a little weensy teensy depression.  I have no idea why.  Well, I do.  And I don't.  So many good bad things happening in my life.  Blessings and troubles can overwhelm.  Drags me down a steep ledge that leads to a ravine.  I am all about climbing out.

I haven't recovered from the week in the hospital.  I don't know what I wish for but, I know what to pray for.  I pray for continued protection over not just Gary but all my children.  

I feel like I struggle with anger and happiness.  I really am a blessed, lucky woman.  My family is amazing.  The people that surround me are so wonderful.  But yet, why, when sound goes away, and the worlds fade, I become so emotional, and I cry.  I know why.  I know, I can't control it.  It is like the great sadness.  It effects me when I run.  Knocks me around.  I can't even imagine where or how I would be without my parents, my sisters**, my brother, and the Cure JM Moms.

Enough of the MUSH and oh pity me stuff.

Gary's elbow is healing?  I think.  Never done this before.  We were in Wednesday for Rituxan.  We were given our own room which was so wonerful.  LOVE.  Makes things so much better.  So much smoother.  Not much new.  Just workin the rough sea.

Monday, September 3, 2012

The Great Event

After our infusion of Rituxan was last week scheduled for the 28th.  Unfortunately, the calcium deposits that were looming before weekend (Aug. 24) were done looming.  The decided it was show time.  Unable to bend his arm, Gary became increasingly uncomfortable.  We called and got our appointment to be admitted a day early.  We are were worried about infection but no fevers, or other signs of infection made everyone feel a bit better.  We were admitted to get Ibprofen through his IV.  I will spare you our experience with the IV team.  It over with and done.  I learned a lesson.  Now I know.  There are different sizes of needles they use to access ports.  The too big ones are not for Gary.  Just nevermind.  PUNCH

By Tuesday morning things were looking better.  The tordal seem to calm his arm down.  We decided to pulse him with steroids twice.  They felt with the calcium putting on the show it is, it was part of the flare he experience due to not pulsing him with the steroids the way we should have.  So by Wednesday, we were ready to go home. 

Thursday morning was Kindergarten orientation.  OOftah.  That was overwhelming.  A little for him and a lot for me.  So many kids.  I waited until everyone left, and did it.  I cried.  Ugghhh.  I didn't want to cry but I couldn't help it.  I talked to her for what seemed like hours.  I wanted her to know every detail.  Everything possible to make her understand how serious this is.  I showed her his port.  I like her.  It kind of helped that she was familiar with ports.  Her little nephew has one.  His official first day is tomorrow.  No strapping on a back pack.  No stepping on to a bus.  No first day outfit.  No first day pictures.  Gary's first day will be spent in a hospital bed.  To be honest, am alright with that.  : )  I feel, protected. 

The Great Event
After kindergarten orientation things took a turn.  He began to hold his arm funny again.  By the hour, his play was interupted by winces and holding his hand with the other.  By night time, things got much worse.  I am surprised we made it through the night but I thought maybe if we made it to the morning.  His elbow/arm was so bad, I had to give him tylenol and oxycotin every 4 hours, if that.  I had spoke to the rheumatologist earlier that day.  Told them ok, what do you got that I can give him.  At that point I had no idea just how far away I was going to let this get from me (referring to the pain, redness, and swelling).  She called in naproxen and wanted him to start a medication they give gout patients.  Naproxen first to make sure his tummy handle it.  The two days later add in the new medication.  We went to pick up the naproxen.  It was in the evening, around 7pm.  They informed us they didn't have it.  So I was upset but thought I would just get up in the morning and drive to the hospital pharmacy to get it.   Well, that didn't last.  The night was horrible.  He got little sleep.  I tried so hard to stick to my plan but by 4am I knew naproxen was not going to cut it either.  I had to get the kids off to school, then onto the ER. 

I told them I cannot manage this at home.  There is only so much bottles of medications I can give him for the pain.  They completely agreed.  One look and he said, "lets get xrays, and get you to your room."  Just like that we were admitted.  As soon as the tordal hit his system, it was straight snoring.  Poor little guy.  He was so exhausted.  We were so for the help we needed to get him out of pain.  His elbow looked horrible.  He couldn't move it, breathe on it, nothing.  They scheduled an MRI for 10.  The whole infection thing is the one thing no one wanted to fool around with.  So he was not allowed to eat.  It wasn't as hard as it has been in the past to do that because he was on pain medication.  But when he got hungry, it was annoying.  Ten pm finally rolled around.  They walked us down.  There we sat for another two hours.  I am so thankful to my sister and her husband.  They were there with me every step of the way.  Gary's father had proir engagements that a hospital stay did not warrant cancelling.  The MRI people put him night night and sent me back to our room to wait for him.  He didn't come back until 230am.  Nerve racking but I was also having a hard time keeping my eyes open because I had not had much sleep the whole entire week.    We are all tired and spent but very grateful, again, for the help. 

The MRI showed no bone infection.  No signs of abcess.  Just cellitius in the layers of tissue.  The muscle was a little inflammed but he does have dermatomyositis so.

THE FOLLOWING ARE PICTURES OF THE PROGRESSION OF CALCINOSIS.  IT IS NOT FOR THE FAINT OF HEART.  IT IS NOT TO TERRIBLE BUT ENOUGH TO PUT THIS COURTESY WARNING UP TO FINISH READING AND EXIT OR GIVE A GLANCE.  Why put them up.  Because I want other families who experience this to be able to have access to our experience.  To learn from it, to help.  I am not posting these to take advantage of my child or try and gross you out.  If you are grossed out, well so is Gary.  He nearly barfs when we change his dressing.  So if you can't handle of picture, think if it was on your body. Oh that just sounds rude and bratty of me.  My personality is a little alterted right now.  I sort of apologize.




Started out with discomfort and redness.
More discomfort, raised, unable to move arm.
Calcium released.  Here he was on morphine.
With pain management, antibiotics due to a staff infection, he is feeling better.

And now a hole. 


More calcium exiting.


Holes left behind from the calcium exiting.  Treating the wounds like a burn.


Official diagnosis: Progression of calcinosis, staff infection

Friday, August 24, 2012

Aug. 21 Infusion: Cytoxan, Pamidronate, IVIG, Methopred

Well that wasn't what I expected.

It was decided last month that I would decide if Gary needed to come in between monthly infusions. Gary's muscles and everything looked good.  So we kept on trucking.  His strength and energy, tip top.  Until about 1 week before we were due to come in.   Even over the past couple days is when it really came on.   No weakness, but heliotrope rash, capillary changes, and increase in the size of calcium deposits.  

Calcium Deposits
Gary still has a ton of these.  They really have a mind of their own.  There are some that have gotten smaller. There are some that have increased.   He has one in his bottom that has calcium slowing coming out.  It doesn't bother him as far as pain still so that is good.  One in particular that is bothering me just to look at is above his elbow.  Last month they did xrays because the doctor who saw him wanted to see if there was any invading the joint or causing an deterioration of the joint.  The xray didn't show that as far as they could tell.  However, a month later it is still threatening.  Just to look at the spot makes me cringe.  It looks so solid and hot and red.  There is one on the top of his shoulder that has increased in size as well.  He does have one I found in his cheek (in his face).  It hasn't changed.  There is one on his belly that is bigger as well.

Capillaries
I keep an eye on them, oh, everyday.  They looked pretty good all month.  No changes that I could tell.  The doctor asked me how I look at them (like with what).  I told them with just my eye.  She said nodded and said she felt they look worse than last month.

The clinic appointment went pretty much like last month.  We were there for a long time discussing what to do next.  Our main doctor is out of town right now and we be there next week.

The dilemma.  What to do next.  We have one more treatment in the series of cytoxan.  He has been on it for seven months now.

The one question that they keep asking me, what do I think is working or has worked in the past.  So, I have homework to do.  I am going to sit down and right a review.  A review of each medication he has been on since the May 9th, 2009.  They keep asking me what I think has worked.  I really don't know.    But I will.

We are back on Tuesday for Rituxan.   Just in time for Kindergarten.  We are caught up on all immunizations that we can get caught up on.  Emergency Medication Supply is ready.  Classroom Medical Accommodations document, got it.  Giant Bubble, check.  This should be interesting.

 

Last night he stayed at Aunties.  It is his oasis.  This morning he woke up and is starting to protect his arm with the calcium deposit that is increasing.  This is a new one for us.  It surprises me that we haven't run into this trouble as of yet but just the same here it is.  We suspected the calcium was going to start giving him trouble.  Hopefully it won't it will resolve on its own?  Weep.

Wednesday, August 1, 2012

Aug. It is AUGUST

I can't believe I haven't posted since July 6th!

Let's dive right in.  All is well.  So well.   Gary is back, and back BIG.  Muscles are not 100 but 92%.  How I calculate that I have no idea.  But stepping up stairs, gaining confidence that he never had.  Between weekly pulses, and physical therapy, we are doing great.  Our last infusion was July 23  It was originally scheduled for July 18.  We had gone on a camping trip.  My most amazing sister and her incredible husband drove their trailer up to a campground they have a membership too.  Parked it for us to let us camp.  We had planned for the week but took what we could get.  Gary's infusion was mid week, so when planning it I thought , no biggie, we will just pop over to the hospital, do a quick overnight and be back.  I often do that.  I think you could safely say it is a fault of mine.  The words are so much easier.  I often do the same thing at the beginning of my long runs.  "It's only 17 miles."   The day came.  The campground had a pool, hot tub, and putt putt golf.  How could I look into those eyes and say we have to go.  I called and asked to reschedule.  They agreed.  I am sure I messed schedules up.  I am sure I irritated a few.  But three years of this,  and someone needed a much deserved PASS.

So that is what we did.  I am so glad we did too.  Our reservation did not go through the week.  We ended up having to come home early because the camp ground was out of space.

Our infusion was Monday the 23rd.  We went to clinic at 11am.  We were there for nearly 2 hours.  I just love our doctor.  Well, she is the fellow on rotation but I think she is beyond amazing.  She listens to every detail.  Every view.  So that is what took so long.  She explained to me that the official THURSDAY meeting  they talked about Gary for awhile.  Gary only has two more cytoxan treatments in his series of seven.  They talked about which direction to go in next.  He can't stay on cytoxan forever.  I want grand babies some day after all so lets no push it.  Can't stay on IV steroids forever either.  Or can we?   I don't know.   I love the talk of remission, which we didn't discuss because I feel we are a long way from hit.  Steroids are his bandaid.  While I will take it and rejoice in it, I still feel we have a journey to get there.   I am grateful the road is bumpy.  We took a xray to see if the calcium is entering his joints.  It looks as if there is a donut shape around his the joint.   No problems with movement.  The xrays were inconclusive.  It seemed the calcium was staying of the joint but they couldn't see the joint itself because there was so much calcium.   I like what his deposits are doing right now.  They have all reduced in size.  He does have some trouble some calcium in his bottom.  Right at the top of his crack.  It is slowly seeping out.  It itches at most but still.  It does look bruised around some spots.  My opinion is too keep the pamidronate infusions up  monthly.  I think the steroids have a lot to do with the reduction in inflammation, all over his body.  All labs are clear.  They did check for iron in his blood.  It keeps coming back low.  They did a binding iron test thing and it was ok so press on.   

The conclusion of our long conversation was, well, I think she was just seeking my opinion.  She wanted to know what I thought.  Did I think we have ever truly gotten Gary's JDM under control.  Turned off?  Have we ever been in a place where we thought maybe just maybe we hit the pathway.

No.  No we haven't.  Muscles.  Yes, we know that one.  There is another however,  another pathway that we have yet to block.  

The latest is there is a whole new line up of medication.  They are stirring away from TNF blockers.  Hmmm.  We shall see : )

No limp.  Skin, Okish.  Calcium, Goodish.  Energy, over the top.  Thank you steroids.

Friday, June 29, 2012

Infusion

I am a little behind on my blog here.  Been busy and very distracted.

Gary's infusion was on Wednesday the 20th.  We had a clinic appointment then to the floor for an admit.  The 38 admission I think, or something like that.  The appointment seemed to go fast.  It wasn't that they didn't have time or anything it was just the same old same old.  Ok honestly it was very much a blur.  We are continuing on the same course with treatment.

We exited clinic and went to have the front desk call admitting.  Like we always do.  We then go to sit on the boat (a large canoe that is really a bench).   It was there I received the news.  My phone had a message on it that said, "I just heard, so sorry, praying for his family."   First.  What?.  Next, instantly, I knew.  My face contorted, my breath left.  My heart sank, then broke.  My stomach wrenched, my chest tightened.  Heat and pressure rushed to my face.  I threw my hands over my head.  Rocked once.  Forward then back. Gary's face filled with fear.  I felt someone sit next to me, and a hand come over my back.  She whispered into my ear, "what can I do?".  Another mom, with a baby girl strapped to the front of her.  She talked to Gary who started asking questions and was getting agitated.  He thought I was crying because of him.  I couldn't speak.  My throat was too tight.  I came back quickly to get myself under control because I needed not to scare my five year old son.  The woman told Gary so very gently, "sometimes Mommies get sad."  I finally said a very good friend went to heaven.  Then Gary would not stop until he knew who.  My mouth could not form his name.  I could not tell Gary who.  But Gary doesn't fully understand and I would rather give him the information he needs to know.  The unknown can be terrifying.  My lips wouldn't even make the sound.  But in between a brake of sobs, I was able to say it.  Mason.  Our friend Mason.  Gary asked if Mason was where Ray's Dad is.  I said yes.  He said, Oh that it sad.

When you are admitted to Children's from clinic, they send an escort out to walk you down to your room.  I have gotten know most every escort.  In fact, if I don't recognize the person I ask if they are new.  This time there was two of them which was weird.  I couldn't speak.  I thanked the lady for her help.  What an angel.

The two gentlemen who were helping us down asked if they could help.  I said no, I had everything.

The elevator was just great.  It was stuffed full of people, with me sobbing.  I could tell the other people were very uncomfortable.  I hid my face and gently cried.  That is all you could hear.  A few of the ladies tried to chat to cover up my sobs.  We finally got to our room.  The staff was a buzz.  You could tell they were forming to make bring in whoever and whatever for support.  I was able to turn it off.  I put the brick wall up in my mind.  Got down to business.

First order of business was Gary suddenly got a bloody nose.  No big deal.  It happens.  Then he complained he felt pukey and kept making these throat clearing noises.  The blood nose stopped.  I was chatting about the nurse, answering the usual intake questions when Gary made a gag noise.  He coughed and there, on the couch in our hospital room was a bloody sticker.  Gary had stuck a cars stick up his nose.  He coughed it out.  I was stunned.  I asked him when he stuck if up there.  I think it was on the way to the room.   The nurse was just as stunned as I was.

I really really wanted to ask for a room to ourselves.  I really really should have just gone home and come back later in the week.  Our room mates was very nice.  They were treated to me coming in to the room and listening to be sob.  I still can't believe it.

The infusion and IV start went good.  From what I can remember.  I told the IV team that Monday we were scheduled to have a port put in.  She looked at me, eyes big, and said, "that is like Christmas to my ears. He is one of my hardest pokes.  I never know if I am going to hit or miss.  I am so glad you are doing this."  Well that was one vote for yes.

I was so out of it and so exhausted I forgot things.  I forgot to remind them to slow the IVIG down.  When I woke up around 5am, the next med was up and running.  I asked the nurse about it and she said she didn't see anything in his file.  Right because the five allergies he has listed as different types of IVIG's didn't tip you off?  Oh wait.  No allergy band.  Next time, I will gather myself, and go home.  I need to be on my A game. And for one of the first times in the 3 years Gary has been receiving treatment, I was not.  Next time, when I am upset like that and can't watch over everything like a hawk, we will just have to come back.
The IVIG went in over normal rate.  He did fine with it.  He did get pretty sick that night but I have no way to tell if it was from the infusion or what.  He had Cytoxan, Pamidronate, IVIG, and a pulse of steroids on 6/20.  that part is for me and my records : )

PORT SURGERY
Port surgery was yesterday.  It was very well.  I was calm and clear.  The only part that was difficult when he realize they were putting him to sleep.  At the surgery doors he began to cry when he realized what he didn't realize before.  I am not sure why he didn't put two and two together because he usually does.  When doctors came to get him they thought he would simply just walk back.  I am always hoping for new happenings, like when he had the MRI.   He is still just a babe, and with everything he has been through these past three years, he is just not there.   So they aborted the mission to find me some scrubs.  I gowned up and picked my baby up and walked him into the surgery room.  He cried.  Alligator tears rolled down his cheeks.  He sat on the table in his underwear and hospital gown scared.  It was minutes before they were ready with the gas.  An intern anesthesiologist, who was being closely monitored, fumbled nervously.  He wanted to hold the gas next to Gary's face instead of on it.  The mask pointed toward me.  His senior resident quickly grabbed it from him and said, "no no no, your gonna gas mom."   I briefly thought for a second, "I don't mind."  LOL.  Of course they way Gary giggled, then his eyes rolled back in his head, pass on hitting the floor.  The doctors and nurses always look at me so compassionately and almost sorrowful. "He'll be fine Mom."  I kind of do phhhhfffttt, grin, huff, and then with a straight mean face I look them all in the eye and say, "he better be".  lol.   Nah I didn't say that.  I appreciate their compassion so much.  If it was any other way it would be difficult.

The procedure was to take only 30 minutes they said.  It took a little more.  I tried to enjoy my time with my latte but was anxious to see him again.  My pager went off and it was time.  They only said two people.  So I brought his best pal with me, Uncle Ray.  They put us in a room where he wasn't.  Then they came and got just me to go into recovery.  It was what I expected.  He was angry, disorientated, and in and out.  They wanted me to hold him.  They promptly layed him in my lap.  I looked down at him.  He told me hated me gasping for air and crying.  He then went back to sleep.  He woke up every few minutes to cry and complain of a headache.  I asked for Tylenol.  The nurse and I chatted about whether it was from the surgical site or if it was an actual headache from the narcotic they ran through his IV.  I said a headache.  I could tell by the way he winced at his eyes.  I have seen that look all too many times.  They couldn't give him tylenol until they did an xray to confirm the port was in the correct place.  I expected to be transported to xray but they did a bedside xray!  So nice.  Minutes went by.  The nurse wasted no time at all.  She called the doctor right away and said, "Gary Bradford's xrays should be up now."  I held him in best position I could.  I was relieved for two thing.  When the tylenol went in and when I was able to put him back on the bed.

They wheeled him back to second and final phase of recovery.  This time I wanted him to take his own sweet time.  They wanted him to drink.  He didn't want yet.  The next nurse of that phase said if he didn't drink we couldn't go home.  She wanted to go to lunch.  I so get that and that was ok.  If I had sit in that all day and all night I would have.  When he had his teeth done we were pushed own way too soon.  Gary came out out of the anesthesia smoother suddenly.  He was talking to his Auntie and sister.  I kept him snuggled and wrapped up until he wanted to move.  He finally took a sip of apple juice cooperatively and stood up.  I was proud of him.  He can't see his port without looking in the mirror.  He was trying to see it.  I was so impressed.  He seemed prepared for this.  He for the first time, I could tell, understood what this was all for.  It made me feel so proud and relieved as his mother.   This was my decision to make for him.  A very difficult one to make indeed.    Gary Bradford, you are awesome buddy.  I love you.

Another Pulse

Forgot to Post this.....
Another pulse and this boy is a mini man. He could move mountains. Wish it didn't take steroids to get him there. Hunger keeps him awake at night. Think that why I have been wanting to nap during the day. Cuticles look pretty good. They are still showing signs of capillary change but the anger is subsiding. Our doctor called on Tuesday to talk it all out with me. I told over weekend he was fabulous. I said the 500mgs of steroids works nicely. Monday he complained here and there of trouble getting off the floor. A little tired but good. I said I was on the fence about whether he needed another round. She immediately replied if your on the fence then do is his disease. Well, let's push that little bully off the fence. (speaking of Jdm not my son). Of course after my lip and moments after I may had something different to say, but it was short lived.

KINDERGARTEN
Tears. Fear. Sad. Scared.
I think back to my daughter and oldest son. Elexis is ten, McGuire 13. How different this child has been. Elexis did two years of pre school. She was strong, smart, sassy, full of energy. Mommie did cartwheels when this wee one went to school. I didn't worry about her. McGuire, he had been in pre school since age of three. I did worry some about him because he was always a step behind the rest but Gary, Gary will be my ultimate final heart wrenching last to enter into kindergarten. We met with the school today after physical therapy. They wanted to meet him to see exactly what they needed to do for him the best they can. It was very helpful for me knowing they care. They are taking his health and his education seriously. He drew some pictures for them. He did great. Copied a triangle, a plus sign, and a square perfectly. His cutting was up to par as far as they could tell. He even put down the first letter of his name! Around and hook it back is how we make G. I also told them he had experience with smiley faces.  Now onto immunizations.

Sunday, June 3, 2012

Finally

He looks so much better.  Things are kicking in!  Yes.  On Thursday we had our 500mgs of methoprednisone followed by a dental procedure.  It started with the standard, nothing by mouth, so naturally that was the night before.  I was so thankful to have my sister with me.  They let me carry him back went it was time.  He had fallen asleep waiting on them.  So he woke up to going into the surgical room.  I was in the gear they give you to simply enter the room.  He was most displeased with the fact I had on a surgical hat.  But soon none of that matter because he was snoring again.  They fixed his cavities, cleaned his teeth, and scoped his throat.  The scope was on order from the voice doctor who asked the next time Gary was put under, he wanted a peak.  Here is what he found:
View photo.JPG in slide show
I know ewww.
But this is what they are suppose to look like:
View photo.GIF in slide show
They are suppose to be thin and white.  I know my friend Summer has struggled with the same thing.  The hoarse voice.  What to do about it.  The doctor explained if this was Gary's only concern we would inject steroids right into the vocal cord.  Gary, however, has much more to deal with.  He wants him to start voice therapy for now.  We hope it will get better with time and age but as long as JDM is at work, what is the point.  Least of our worries I suppose.  What bothers me a little bit is his colon looked the same as the lesion looking vocal cord.

The great thing right now is he is feeling better.  Walking better.  Talking better, everything better.  I do have a fat lip from being head butted by him.  He thought a good wrestling move was a full on face slam.
Spent Friday night as Angelina Jolie.

Monday, May 28, 2012

Went Back

As much as I didn't want to we had too.  Our monthly infusion was due.  Wednesday we were scheduled to check into clinic at 10am, then on to physical therapy before we hit the pool.  Unfortunately, as we pulled into the hospital Gary had an accident in his pants.  There went the pool.   It honestly instantly upset me because I thought it was over.  He had gone for 24 hours without going potty so I thought for sure the next time it would be over which would have confirmed a virus.

When we went up to clinic, I was close to tears.  I didn't want to run Remicade.  I didn't want this to be an issue.  The nurse asked me about meds.  I looked at her and said, "I am having a moment.  I need a minute.  I am so frustrated.  I am not frustrated which anyone here.  I am frustrated with the situation.   I thought for sure this was a bug."  I went on and on.   She was very comforting.  In past months, she had not said much to me which I found strange.  I wasn't offended by the way she was stand offish.  People have their reasons.  I am realize not everything is about me.  So I just went with it.  She was polite enough so.  Suddenly, in the rawness of our emotions, she let it go.  She had recently had a baby.  I heard about but wasn't given details so decided to mind my business.  As tears filled my eyes she let me know her newborn went 17 minutes without oxygen at birth.  She said despite what tests say she does not seem to have the brain damage she says she does.  Her baby is making the progress she is suppose too.  They take each day one at a time.

I thanked her for sharing her personal experience with me.  I told her it meant a lot.  We laughed as I asked her not to tell them I was crying.

When our doctors came in we talked about a plan of attack.  She gave me a couple different options.  We could run the Cytoxan, IVIG, Methopred, and Pamidronate as planned.  Then the next week another pulse with Remicade for what we thought was the return of his IBD.  Second was to run the Remicade, methopred, pamidronate and wait on the IVIG.  Push the IVIG and steroid pulse to the next week.  I wanted to go with the first option.  I wanted to give his bowels more time.  This potentially still could be a  bug.  But what I didn't like is this virus is making his JDM go bonkers.  Labs are fine but that matters not.

The hospital stay was the worst.  Well, I cant think of others stays that matched but, shared room, very small, next to the nurses station.  Our roommate had to dominate the bathroom because he was there for colon issues as well.  Fortunately, Gary didn't not have to use the bathroom.  In twenty four hours plus, we did not once enter the bathroom in our room.  Gary used the urinal.  I had to walk down the hall.  I could list all the mistakes and details.  All around, it truly was terrible.  It was even more terrible when the doctor came in that evening to suggest maybe the return of Gary's diarrhea was from milk or from gluten.  I was close to ripping out his IV and walking out of there.  It is the style I am not use to but just the same it was the last thing I wanted to hear.  Are you telling me we gave him Remicade because of simple intolerances?  Why wasn't that explored before running three months of treatment.  By the way that same treatment cured his diarrhea within 24 hours of running.  How is that an intolerance.  I was ready to run.  I am not against it.  It very well could be.  But a biospy and blood panel said there was no evidence of that.  The night was long.  Gary was miserable.  Although the IV start went very well, the infusions themselves were hard.  I am strongly leaning towards having a port put in.  His veins seems to be burnt or stripped or something.  He acts like he is being infused with acid.  I'm just so done with it.  I know that doctors will be upset with me.  I know my family will too.  But I have to do what is right for him.  He can't do this anymore.

Thank you Summer!

Tuesday, May 22, 2012

Don't Want To Go Back

Instead of the gagging being a side effect of methotrexate, it actually wasn't it.  It was a start of a storm.  A stomach flu storm.  Wednesday night he had the return of the evil diarrhea.  Thursday, tummy pain.  More diarrhea then vomiting.  He continued to run around so it was confusing.  Friday morning, vomiting and diarrhea, from both ends.  Oddly enough he was not "ill" but was getting run down.  Friday night, with my high heals on, all dressed up for a birthday party I was suppose to go to for a good friend, I spent snuggle him, worried.  Mom slipped back into her pajama's,  and back to bed we went.  Gary slept a long time.

All of his calcium deposits were enlarged.  No fever, but he began to throw up the water he drank and continued with diarrhea.  Saturday morning I had enough.  We called the rheumatology doc on call at Seattle Children's, packed him up, and headed in.  I didn't feel like I could keep in front of his hydration.  He was red with a rash that looked like he had scratched up a storm which he had not.  This bug denoted on Wednesday evening because that is when the rash appeared.  Much like the one he had at diagnosis.  His JDM looked like it was glowing bright.

Once in the emergency room, labs were taken.  They gave me a choice to take him home if I felt confident I could keep him hydrated.  I didn't feel that way.  His food aversion and now drink aversion was troublesome. Hydration through IV was the best bet in my book.  They agreed and admitted us.  That night he put a special show on in the bathroom.  Never seen something like that.  I mean, on the walls even.  Explosive to say the least.  Every time he nibbled on food it was consequence.  We waited till Sunday night to leave just to make sure.

We discovered he has open sores on the insides of his cheeks and on the roof of his mouth.  They don't seem to bother him with pain.  The more I get a peak of it I think it might be thrush.  He is on medication to treat that so not sure why it is not working.

I am so glad he is doing so much better.  We weren't sure exactly what he had but now everything seems to be subsiding, everything is coming back on line, it looks for sure it was a gasteronitis bug of some kind.  I do think it is doing nothing for his JDM but it is a wait and see.  His labs were fine.  His C. reactive protein was elevated again but the virus can cause that.  Right.   Sure it can.  

Today he was well enough to go get his eye's checked.  Checked out A okay.  Then we went onto PT.  On the way there I gave him his vitamin D and calcium chocolate chew.  He told me it tasted bad which he had never complained about before.  He chewed it much longer than he has ever.  It somehow turned it into a taffy, stringy like, texture which suddenly, he decided to gag and choke on while I drove down the road.  It gagged him and once again, he brought up the entire contents of his tummy.   All over the back of the car.  I couldn't get him to talk to me so I began lane changing frantically planning a straight shot to the town's emergency room which was 6 blocks away.  I yelled for him to talk.  He couldn't because he was to busy heaving.  I finally saw a gasp of air.   Then another.  Then another.   Then the car smelled like a someone rode the merry go round to long.   If I have to be around barf another second , I am gonna lose it.

Well not really.   But I am growing tired of it.  A little buck naked action in a parking lot at the grocery store to change clothes.  Ran in bought paper towels and 409 cleaner to so some damage control in the back seat.  It was interesting he had a hard time walking around, grapping at his legs periodically saying his legs hurt.

Later at physical therapy he definitely was crabby.  He was not cooperating with any body that day.  She tried stretching him out and said his range of motion seems good today but he is also tender to the touch he seems like.  She made a comment to me that when he doesn't want to do a certain task, he says he is tired.  If it is something he enjoys then he does it no problem.   I wasn't sure how to take that.  I mean, it is true.   But don't we all?  I already knew this about him.   Gary's brother and sister are the same way.  Something they don't enjoy, well, let the drama roll.  He does not however, fake anything.  I don't think she was implying that but unfortunately after a long weekend in the hospital, a long day, I must have been sensitive.

Tomorrow we have to go back.  I really don't want too.  I even contemplated asking for a reschedule for later in the week.   I can  only imagine how Gary feels about it.   He needs to be followed though.  He needs his treatments to make sure we are staying in front of the JDM or extinguishing fires from this nasty bug.    Five days of not being right.  One thing we have to look forward to tomorrow is before we go to the floor to start his IV and get meds going, we are meeting PT at the pool.  She is going to do some work in the pool.



He is in good spirits, so I am grateful.  Tired but grateful.

DAD GOING DOWN
Since it was the weekend, it was nice to have my husband with me finally.  Well until the IV was started.  My husband was holding his hand while Gary screamed, when his head went down.  The nurse called over to him, "ARE YOU OK SIR".   He was pale and spinning.  We told him to sit.  It distracted Gary for sure but we thought Dad was going to hit the floor.  It took him about ten minutes for the color to return to his face.  This is the first time a relative has had this reaction.  My niece did the same thing.  Oh boy.

WHAT MAKES  ME SAD
The happy boy is gone.  He was here when the antibiotics were in his system.  So was his strength.  His strange euphoric happiness we just couldn't get enough of.  He was good hearted, loving, caring, amazingly happy.  He is back to the ornery, inpatient, not on top of the world kid.  I have even asked the doctors, why?   Why is that?  Why is this guy back?  Not saying I want to run antibiotics but it just seems funny to me.

Thursday, May 17, 2012

Can't Keep Him Down

It's hard to keep a five year old down.  I know that is a good thing, but still.

Gary had a quick steroid pulse yesterday.  It was methotrexate day as well.  So instead of an injection, they just put it through his IV to spare a poke.  Whenever they get a good vein, he can taste everything they push through the IV.  We went to the park after the infusion.  (Get him out, change it up, make him feel better).  The whole time he kept gagging.  He'd be playing on the slide, make a random sound like lunch was on its way back up.  I kept asking him if he wanted to go.  NO.  Finally I convinced him by telling him I was going home, he could stay at some random park by himself.   He took a long nap on the way home.  The nap continued to the couch.  He was miserable when he woke up.  He couldn't stand without getting light headed which was making him beyond mad.   I gave him tylenol, zofran, he was out the door.  He was very emotional and not feeling well.  I guess this surprised me because he has felt a lot better getting a lot more and longer of an infusion before.  I was wondering if maybe the methotrexate being put right into his blood stream verses being injected made a difference.

Distraction technique number one:  combining baking soda and vinegar in a bottle which was neat for oh, thirty seconds.  We decided to take him to the lake for a distraction.  The weather has been nice but cool weather was rolling in.  At 8:30 pm, there he was, sitting in the freezing cold water in the lake, refusing to get out.  He cried and said he found a warm spot, it felt so good.  We live in WA,  temps are still very cool, even the air.  I find myself getting frustrated because as a mother, who in there right mind who let there healthy five year old soak in a cold lake as the sun goes down.  Oh but there is me.  I told him FINE, freeze your butt off then!  His color went from wispy cloud to eggshell white.  (Yes, that is the color of wall paints but work with me here, trying to give you a good description).  Don't need to judge.  I am too busy judging myself.

 I do get his elbows and knees are starting to bother him here and there.  The calcium deposits did shrink with recent treatments, but his elbows look larger to me.    It could be from the steroid weight but it doesn't look like it.  They seem more solid.  He has even randomly complained about feeling a pinching.

It is amazing how the steroids work fast.  His walk and strength will quickly improve, even later that day.  We are working hard with physical therapy to try and get him as ready for Kindergarden as we can.  Next week we have our big infusion.  Cytoxan, Pamidronate, steroid pulse, and the return of IVIG.  Should be interesting.  Our physical therapist mention she may try and get him some pool time.  Hopefully we can do this before he is admitted.  He would really love that.  We are under orders to stretch.   Lots of stretching.  She stretched him out on Tuesday.  He was crying it hurt.  But after she was done, there was a difference in his gait.  

I still worry a little.  At the end of the day he will walk in looking as if his body is using everything it has to make those legs go.  We definitely see good days, and we also see days where he acts like he is too tired to talk.  JDM has a war on its hands!   Come on meds, keep punching for him.

Thursday, May 10, 2012

Rituxan Infusion

It became clear to me that by Sunday, maybe Monday morning, we should not have skipped that steroid pulse on Wednesday.  His limp kept coming in and out, the good ol' red rash on his face returned.

Tuesday we had a physical therapy.  We love our physical therapist.  She is knowledgeable, and does well dealing with Gary.  His reports came back and it was what we expected.  Below average to well below average for bilateral coordination and balance.  So the plan is as soon as he is to a infusions once a month we well step up therapy.  We are hoping this summer to do twice a week, and occupational therapy, like hand strengthening ect,.

When I told our doctor that I think we should have went ahead and pulsed him last week, she brought up one more time, the port.  She warned me that this was the last time she would mention it.  She said that she is not in favor of it, but if I am, then she will put the order in.  Because it looks like we are going to go to once a week infusions for a little bit here.  I said no.  Then we had a 5 poke infusion start.

Just going with it right now.  Making sure he stays walking and swallowing.  Making sure I stay in tune with his symptoms.  Tired.

Saturday, May 5, 2012

Wednesday Clinic

We packed to stay the night, but with a new doctor comes changes.  She is different from our other doctor.  Thinks out loud.  Thats ok.  But it does spin me a bit.  We packed for IVIG and a steroid pulse.  Which means we packed to possibly stay overnight.  But just the same we were going to be admitted.

Good news is he is doing better.  Well enough to skip this weeks steroid pulse intravenously.  His limp from his hip improved a lot.  When he runs, you can hear it, barely see it.  Means?  Means I can hear a quick thump thump.  A regular run is a step one right after the other, in rhythm.  His is more of a one two one two one two.  So the whole hip lag drap thing is so much better.  I have seen little to no evidence of swallowing issues.  It does not help he came down with a bad cold Friday.  I was surprised they weren't more concerned.  But with no fever,  energy in steroid Zone,  can't treat something that is not there.  He has lost his voice from the cold so the doctor was not pleased with the quality, but he has a cold.

Remicade
So they stopped Remicade.  They orginally started Remicade not to treat JDM but to treat his colon.  The speculation that the Remicade might be making him flare.  Agree.  Not entirely.

So we held IVIG.  Part of me thinks she is still going to cut it out completely.  We return next week for the next dose of Rituxan and a steroid pulse.  That will be all with the Rituxan for another 4-6 months.

The next week after that we return for another overnight of Cytoxan, IVIG, Pamidronate, and steroids.

We were sent home to come back next Wednesday.

Friday (5/4) we had an emergency dentist appointment.  The day before Gary woke up to what appeared to be a toothache.  He was rolling around on my bed at 6am, crying his tooth hurt.  I immediately gave him tylenol and called the dentist.  It was 7am and they were there.  I couldn't believe.  Gary also see's Children's Hospital in Seattle Dentistry Department.  They deal with immune compromised children.  There is a certain special handling these kids need.  They got us in at 10am.  The dentist saw no immediate evidence of an abscess.  But he does have a few cavities.  Gary is to young for xrays.  The dentist was very nervous so she talked to me about putting him completely under to take care of everything.  They will put him under general anesthesia.  Do xrays, fillings, cleaning, ect,.  I know what you are thinking.  For a dentist?  Really is it necessary?  Yes.  It is.  Gary has had extensive medical procedures that have made him intolerant.   Extremely intolerant.  That was evident during the MRI we tried to get him to do without sedation.  The dentist was even more concerned and motivated to get an xray done when she saw he was on pamidronate infusions.  She explained how these infusions can change the composition of his bones.  She said his baby teeth might not fall out the way they should because of the strength this creates in the bones.  Good add another to the list.  So he will be getting some sleepy juice.  She said it was important to make sure he doesn't have necrosis in the jaw from the pamidronate.  This means the bones dies.  It has not been seen in children, but has in adults.  I love it when it is explained to me, "we are exploring new horizons with this treatment and how it effects dental bone development."   Oh how fun.

He is still trying to recover from a cold he caught.  He has had it for 8 days now.  But it doesn't make him feel bad or sleep bad, so that is a plus.  His heliotrope rash is there on and off.  It is faint enough someone who doesn't know him will say he looks good.

Friday, April 27, 2012

Monday Turned It All Around

So after Friday's appointment and joyfully skipping home that we didn't have to stay there.   We knew we would be coming back Monday but still was good to go home.  The weekend was good.  Great weather.  Saturday we had Elexis's final soccer game.  Sunday we went to a Relay Race out in North Bend.  Fun.  Monday we checked in at clinic at 10:30am.  It was definitely hard to roll out of bed for everyone after the busy weekend.

Not much had changed with Gary from Friday.  The doctor took the time to do a CMAS test.  We typically don't do those because of his age.  But now that he is older she wanted to get a baseline.  I did bring up the swallowing thing again.  Over the weekend his coughing while eating started to increase.  Drinking from a water bottle triggered a cough/wheeze pull over the car are you ok incident.  The family mention they noticed more and more something seemed off.  I didn't emphasize it.  Only mentioned it because of the doctors reaction from it on Friday.  She by no means dismissed it, but maybe could have taken the time to listen closely.  However, it was the first day we noticed something so we didn't have enough times to support warranting a test.  Again, she said brushed it away.  His hoarse voice turned a little nasally sounding as well.  She did noticed that but during a speech pronouncing  test, he seemed to have no trouble.

After the appointment we headed to the floor for admitting to get the ball rolling.  We had to share a room but our roommate was an wonderful.  A little peanut of a baby who made little sound because he couldn't.  The resident doctor came in to meet and greet.  They are responsible for putting in all the orders of medications.  It is basically like have 2 clinic appointments in a row.  Sometimes I will forget things because I already went over it in clinic less than 20 minutes before that.   The beauty of it however is with the resident doctors.   They can be difficult to deal with but will order tests.  I explained to her what we have been seeing.  She said, "let's order a bed side speech consult."  Speech consults also evaluate swallowing.  Later that day she arrived with a plate of food.  Yogurt, bagel, chips, and juice.  She was familiar with Gary.  I recognized her from when his swallowing was effected at the beginning of his diagnosis.  We started out with the yogurt.  Right away we both looked at each other as he grabbed his nose, his eyes watered, and he sniffed.  The rest of the food he did fine with.  Like in the past week, it wasn't all the time, just hear and there.  Signs.   After her evaluation she said he definitely needed a swallow test done.  She said she is seeing obvious signs including the food would change the sound of his voice.  This indicates his muscles aren't clearing the food completely.

MRI Try
Before speech came down to our room, the resident suggested we try giving him an MRI without sedation, totally awake.  Well, ok, I guess.   So that is what we tryed.  We barely got to the door of the MRI room and he started to become very upset.  Eye roll.  Please people.  In the past month he has had a colonscopy, an endocscopy, a spinal tap, repeated IV starts and blood draws.  My child isn't easy going like that when it comes to things like this.  I don't blame him.  Even giving it a try was not necessary.  No need to cause undo stress.  Of course I let them try because it would just be once less thing that goes into his body.  I admit I hoped it would work out too.

The MRI was the next morning because he need to have nothing in his tummy.  Placing him on the table to be sedated was just as bad.  Anything that runs through his IV is always sensitive.  He ouches and gasps.  They explained the sedation med can sting pretty bad.  They try and put some numbing stuff in to help but it didn't.  As soon as the milky white liquid was pushed into his IV he went into hysterics.  He started to bang his head and flip his body back and forth in agony.  Less than ten seconds later he was snoring.  He quickly drifted back, we layed him into place.   An hour and a half later he was out again.

CONVERSATIONS With the doctor
After the medical team received the evaluation about the swallowing, our rheumatologist popped in.  She looked a little.....not mad....but maybe frustrated and couldn't believe it.  "So its real, that is what you were really seeing."   She shook her head then proceeded to dive into her own mind.  We kept going over the what he has had, when he had, the order of the past couple months.  She said she was very displeased with the swallowing.  She stepped into the room and said, "so its real."   She went over medications.  Suddenly we were adding drugs back on the list.  Including IVIG and Rituxan.   She admitted she was scared to give him this combination.  We talked about more steroids.  Going back up on the home dose.  Questions and answers bounced back and forth between her and I.   The port word even came into the picture.  Weekly steroid pulses until he recovers.  The main anxiety she was having was Rituxan and Remicade and Cytoxan.  The MRI done the next morning did confirm the funny limp was from inflammation.

The good news is he passed his swallow test.  That means when they were taking live video under Xray of him swallowing, all seemed fine like I said.  I wondered with those results if that changed things.  Like maybe she would want to hold off on running the Rituxan.  The doctors came in and said no.  They wanted to proceed.  I needed time.  So I asked that they give him his steroid pulse that night then run the Rituxan so I could really decide if this is what was best.   It was a plunge kind of decision.  Just do?  My reasoning came down to this,  He was due for his 4 month mark of the Rituxan dose.  I did not think with the results of stopping the cell cept, tacrolimus, and enbrel, we dare not stop another medication.  Even later that evening one rheumatologist came in and wanted to talk.   She said they called an expert who had recommended the Enbrel shots.  A point was made regarding the Remicade.  There are a few case studies in adults where the Remicade actually made dermatomyositis worse.  They wanted to know what I thought.  Right now I think no.  I don't think remicade is responsible for this sudden muscles weaknesses. I think its the JDM protocal taper effect.  < I just made that up sort of.)  But with this disease, taper is the name of the game.  And the doctors know that.  They also suggested it could be from going from 5ml to 3ml in a matter of weeks.  Gary has proven to be sensitive to steroids.  When on and trying to go off them.  Still unknown.  I think the most important thing is that we need to bring the inflammation back under control.  One of the most agitating things, Gary's labs are not bad at all.  We can say that is good?  But labs never tell whole tale.

Gary is home and doing great.  His breath smells bad from all the medication.  They put him back on fluconzole for thrush.  Not even hours after Cytoxan was finished, thrush appeared in his mouth.

It's twisted and complicated.  Just want him to keep smiling.  I will take care of everything else.


Wednesday, April 18, 2012

I'm in a spin, Not loving the spin I am in.....

Today, April 18th, was our clinic and cytoxan admission.  Well, it was suppose to be.  Our appointment was at 2:15.  Gary weighed in at 46 pounds.  That is seven pounds in 2 weeks.  It certainly looks like a whole lot more but it is temporary.  His energy is off the charts.  So far off the charts his body isn't keeping up with him.  After physical therapy on Thursday last week, his walk went to a limp drag.  He hobbles horribly.  Complains of no pain, just hobbles faster.  The limp drag and sudden drastic weight gain, reminds me of Quazie Motto.  His attitude remains above the clouds.  Above anyone else's on earth.  He is so very happy.  A few unnatural tantrums have crept in but those far outweigh his sunny disposition that we have not seen.  I couldn't paint a picture with words for our doctor.  Saying he is a new kid doesn't do it.

We went through the regular conversation.  Fevers, no.  Sleeping well.  All is well.  One little detail that I discovered that morning was swallowing.  During Gary's birthday celebration with the family we video taped him while he ate dinner.  I was watching the video and noticed he was grabbing his throat when the food went down his throat.  At the time I noticed but just stored it in my memory.  My memory was tapped into this afternoon before we left.  He was eating chicken nuggets.  I glanced out of the side of eyes and saw him grab his throat and wince.  I asked what was wrong.  He said the food won't go down.  No choking.  No coughing.  Why is it almost painful when things are dismissed?  Not listening.  Dismissing to quickly.   Moving to fast.  Frustrating.  It is a scenario that has played out to many times during the past three years.  Mothers are to be listened too.  This to shall come to past.  If I was the doctor,  I understand.  I am looking at a child that has gained weight, there is no trouble with food making it to his stomach.  This new, as is his limp.  His limp isn't just any limp, its a JDM limp, neither is his swallowing.  Not related.  Especially being pulled off five different medications he has been on for a long time.  I just have to breathe, when I really want to scream.  I know it seems ironic to most people when he is feeling so much better.  Good,  doesn't take away the fact that we have just come of a flare, blood infection, and major med changes followed by symptoms.  Oh what fun! > : (

MEDICATION
In order to get our infusion down to once a month, we came home tonight.  We are returning Monday night for Cytoxan, Pamidronate, and Remicade.  Remicade is a little early, but just this once, too get these to line up.  Our new rheumatologist decided to also discontinue his Rituxan infusions.  She felt they aren't working.  On a recent trip overseas and some convention, it was discussed how there particular country doesn't use Ritxuan.  There was some confusion between the doctor and I.  We had previously talked about Remicade being used for JDM.  Traditionally it is used for IBD.  So she asked me to ask my JDM Mom's if anyone was on Remicade for JDM.  So I did.  Not many.  She walked into todays appointment asking about Rituximab which is Rituxan.  She told me they don't use this medication over there.  I would love to through out a so what! right here but I know I don't know the whole story and her whole point.  This will all be cleared up.  This appointment was like being on a merry go round that wouldn't stop.  This transition is proving to be a tough one.

Coming down to 3ml on steroids though.  She ordered a MRI on Monday of his hip to check for necrosis which I heard can happen with high dose steroids.  We are gonna steer clear of the internet until after that MRI on Monday.  No reason to get myself all worked up.  I already am.  I am thankful he is doing well and better and all that.  It doesn't take my fight away.  It does make it easier.  I almost typed it doesn't but really if was very sick or in bad pain, well then, it would be much harder.  My favorite!  Perspective.

Now it seems to me that our doctor is going after these calcium deposits.  They are looking much better so that is a good thing.  Just have to tackle the rest, not just one thing.  I know the doctor realizes this but the whole oh yay, alright, thing just erks me.  You can break it down, explain it, try and help me with my feelings but until you walk in it or even at that, no one can ever put my shoes on, they don't fit.

WHAT IS WORKING,  WHAT WAS WORKING?
Gary's Medications

3ml Prednisone
2.25ml Cellcept
2.5ml Tacrolimus
1/2 tab of Hydroxychloroquine
.75ml Methotrexate Injections
25mgs Enbrel Injections
IVIG Infusions
Rituxan Infusions
.8 Enalapril
Folic Acid
Calcium/Vit D
MultiVitamin
ADDED:
Cytoxan Infusions
Remicade Infusions
5ml Raninadine

Do I approve.  That is what I was asked.  I think taking away too many at one time is a little scary.  I suppose all I can do is go with it.  I asked her when she anticipates taking him off Cytoxan.  She wants him to go at least for six months then we will move him to a home dose of a different immune suppression.  Imuran or another she mentioned.  That will bump us right into Kindergarden.  If she sticks to this schedule, August will be the six month mark.   I guess what I would like everyone to consider is the steroids and "how well" he is doing.  He has proven to really like steroids.  His body responds to prednisone.  I don't want anything masked by the immediate effects of removing these medications.


BACTERIA
I asked her if she had heard anything further regarding Gary's blood infection.  She did get the report that the bacteria was not found in the biopsies they took during his endoscopy and colonoscopy.  She doesn't think it came from the dog.  She thinks it came from an infection we saw under his skin.  It was a calcium deposit or a molluscum.  I have lost count of opinions.  

Friday, April 13, 2012

Getting It All Sorted Out

Gary is doing great.  Last week, on Thursday, we went Easter shopping.  As I lifted him out of the car I noticed his lips looked chapped.  It is not the normal dry lip kind.  It's like his lip blister on the inside.  I was overly concerned but the thought of "this isn't over" entered my mind.  Fifteen minutes later they called.  The doctor explained they wanted to continue to treat him with antibiotics.  They call it triple therapy.  Two antibiotics with a high dose acid reducer.  He spoke fast and I tried to remember everything he said.  I thought I heard him say they had never seen this particular bacteria in the blood before.  The next day Gary has his Remicade infusion (Friday).  He did well.  It was a two hour infusion so we were their for five hours.  He had a little trouble with blood pressure but nothing terrible.  We had an appointment in Seattle to follow-up with his GI specialist.    Gary was in no mood to be there.  We talked about how well he was doing with diarrhea.  That is when he informed me that he had just gotten an email from the microbiology lab.  The final ID on the bacteria is called helicobacter canis.  Yes, canis, meaning dog.  The GI specialist asked if we had a dog and said we should have her tested.  This just sends me to a blank place.  I just don't know what to say.  I have looked it up on the internet and I didn't find much.  Nothing that the doctor didn't find on the internet during our appointment.  I suppose the good part is that this blood infection is treatable.  Like before it complicates things.  The GI doctor told me he is almost positive that the ulcers they found in his colon were not from this bacteria.  He thinks they were medication induced.  Whether or not he has IBD he doesn't know.  He wants to continue to run the Remicade for at least the next six months.  See how he is doing then decide if we can stop.  He warned of reactions the body can have after being of Remicade and coming off it.  He said it will likely not happen.  I have so many questions that no one can answer because they don't know.  Like:

When we came into ER on Monday with a fever, headache, and vomiting, was that from this blood infection or from the IVIG?  And if it is not from the IVIG, are we going to keep getting IVIG or are they pulling it from his infusions? As soon as they gave antibiotics, he started feeling so much better.  How would antibiotics help aseptic meningitis from the IVIG?  They wouldn't?  Seems he had multiply things going on.  Now that he has had 4 different antibiotics, cytoxan, remicade, steroid increase, it is hard to tell where his JDM falls into this.

Gary responded so well to the antibiotics.  I mean, he is really a different kid.  Despite going back up on steroids, he seems so joyful.  He is wonderful to be around, so full of love and happiness.  Seeing this side of him, he was not before all this happened with the blood infection.  His energy is wonderful.  He is eating a whole lot and the effects of the steroids can be seen in his face and tummy but I looooovvveee it.  I love hugging him and kissing his cheeks.  The steroid temper is not really there.  He is just this new child.  We finally got to start physical therapy.  They tested him last week and this week.  The scores indicated exactly what we see.  A bilateral balance weakness, he fell way below average.  It is nothing I didn't expect though.  His coordination seem very good.  He was average with ball catching and that sort of thing.  Yesterday they tested his fine motor skills.  He was instructed to color in a small circle and and a small star with a red color pencil.  He used a lot of concentration.  He is so very cute.  He put maximum effort in.  At one point he was getting frustrated going outside the like.  He placed his finger down at the line to stop the pencil from going over the line.  She noted he gets fatigued easily.  I noticed that as well.  He was huffing and puffing just completely the tasks.  But I was very proud of him.  Seeing him sitting there using scissors and folding paper.  It was like a little message that he is going to do great in Kindergarten.  She decided to test his grip strength.  The more he did, the littler then pencil drawing became.  It was based upon a 6 year old but, the average for a six year old is 30 lbs.  Gary was squeezing no more than 2 lbs with all his might.  No biggie, just going to get him working his hands.  My hope is to have him good for September 2012.    There are issues with immunizations that we have to get worked out with the doctors.   As soon as his treatment is over for the bacteria infection we can proceed.  The physical therapy is something I am so glad he is getting.  He really did need it.  All the ability is there.  She made a comment to me, if we can just get him feeling confidant.  Until he gets those balance muscles recovered we just need to keep building him up.  She set out a small trampoline for him to jump on.  He promptly got on it and began to jump, assisted.  He tired and asked to get down.  She said sure.  He sat  to his bottom and scooted off.  She said lets try that again.  She had him step back up, and step back down.  He did it with her assistance.  The whole workout had the poor guy limping out.  But what was amazing was his attitude and wanting to keep going on with his day.  

March and April have definitely proved to be interesting so far.  I am liking so much how well he is responding to his medications, on a JDM level and for the infection.  I do anticipate a honeymoon phase getting back together with Cytoxan and with Remicade in the picture he has always responded well at first.  I pray it keeps going this time.  If it doesn't, it doesn't.  We will keep working at it.  Gary's calcinosis is looking good.  His pamidronate infusion have beeen moved to once a month but we have not done the back to back as of yet so maybe there won't be a need for it.  He is going to be getting a lot of infusions over the next couple weeks.  I have seen some signs of vasculitis under his armpits and across his tummy and chest.  But it goes in and out.  Time for sunblock again around here : )  

Thank you to my very special friends Lynn Williams, The Marcotte Family, and Sue Carpentar for send special gifts making our stay in the hospital fun.  Thank you to my baby sister who is there at a moments notice for any and everything we need.  Thank you to Grandma's and Grandpa for visiting.  Thank you to the Saas Family for spending Saturday with us.  You are all so very very special to us.