My Friends

Labs think they are climbing a mountain....

I remember a ride I once went on. It was one of those wooden roller coasters. If memory serves correctly, it was at Knotts Berry Farm in California. It was called The Ghost Rider. This was before Lexi & Gary. McGuire was just a baby. I never have been a big fan of rides. They always leave me feeling nauseous and in pain. How is that fun? This one was particularly good at delivering physical punishment to your body. I remember closing my eyes tightly almost the entire time. I remember screaming at the top of my lungs as it threw me around, twisting and turning, dropping and rolling. I took a few shots to the gut from the "safety bar". As the ride came to a stop, I went to exit. My hands were holding on so tight, I could not straighten them. It actually hurt to try and open my hand. The only fun part is watching the second part of my family enter encouraging them to go, it's really not so bad I say. Knowing there fate, and looking forward to their reactions.

I would still recommend it to anyone who hasn't rode the Ghost Rider. How could I? That is just plain mean of me. Your right, it is. But here is what it does for you as well. It gets you in touch with what it is like to experience the up and downs of situations that are not under your control. To be able to physically relate to human emotions and what is thrown at us. Sure you could say well I see it has a ride that hurts you unnecessarily, you can do without. But knowing I walked off that ride and I am here today and can relate that experience to my life is pretty useful.

 We had our second dose of Rituxan this weekend. We had the opportunity to check in with one of our doctors we hadn't seen in awhile. I was looking forward to her prospective. When we checked in on Friday, Gary was a good, but red. She did his examination and we chatted. I told her about stomach pain the is everyday with diarrhea. We had attributed it the tacrolimus medication. She asked about maybe having a diary or gluten intolerance. Problem is the tummy pain and poopies all started when that medication did. I asked about his thumb nail. It has been red and inflammed for months. The nail is started to look bumpy like it could be growing a fungus.  Very strange.  Overall she had no outward concerns out of the usual.  She asked me if how the calcium deposits were looking.  I thought they looked the same but while examining I had forget to mention I thought there may be a new one or a series of them on the joint of his elbow.  I apologized for not remembering that when she intially asked me.  To be honest its hard to know if they are new or not because there are so many.  It is becoming difficult to keep track of them.  Gary has one that is coming up under the skin on the back of his hip.  She measured it.  It is tender to touch.  Gary cuticles are not looking so great either.  He has one finger that looks like it is scabbing again.  That takes me right back to the beginning of his diagnosis.  

We decided in clinic to lower the steroid dose through the IV before the Rituxan. I think it helped a lot with the homocidal tendencies.  We were put in the same room as we had last week.  I think they do it on purpose.  I begged once again for a room with a view.  WE JUST WANTED TO SEE THE CRANKY!  They are constructing the addition to the hospital so there is a lot of exciting stuff going on outside that window a four year boy would love and be distracted by.  But he is not the only four year old boy.  Fine.   At least our roommate was not the same one from 2 weeks ago.  He was very quiet.  We had the same doctors too.  Not sure what he was diagnosed with but they were working to shut off his immune system as well.  I am sure our review by them would not be the same.  As soon as the Rituxan started flowing through his body, his personality and character changed.  A look comes over him and Gary goes away for awhile.  He is replaced with a not so pleasant character who's main goal is to hurl insults at this parents.  They had to listen to, "I hate you Mom."    "Your a dumb pig Mom."    "Mom, you shut up."   "Mad at you so bad wight now Mom."   *LOL   I am sorry, I know the normal parent would pretty much be shocked but I just can't help but giggle.  I try not to let him talk to me like that but he is just express how it feels.  We just have a Twist in Translation is all.

Track Marks

Poor buddy.  5 times to get an IV started.  He is doing better with talking about it.  Although he still tries to make himself throw up.  This time though, he told the nurses over and over again, he hated this.  He was really saying he hated them but we translated that to he hated what was being done.  There is complete truth in that. 

Our nurse rocked the house this time!  Very much appreciated her diligence.  She got everything going right away.  It was awesome.  We did not even start Rituxan until almost 7 last week.  Rituxan was hung and going by 5!  Our nurse who discharged us the next morning had everything ready to go by the time rounds came.  Our doctors said as soon as we woke up, to page them and they would come right over and get us out of there.   Well, it didn't end up happening like that.  After they saw the labs, it was time to talk.

THE TALK

Ugghh.  After the labs came back, and they looked them over, everyone is starting to get a little concerned.  She apologized for taking a little longer but she need to go over where we have been and where we are going and make some changes.  And she did.  I think at one point I did a blog about the great taper.  I can hardly believe we are headed in the opposite direction.  She said all his inflammation markers are up.  She explained she would like to increase medications.  She looked over at him and asked if the steroids always had that effect on him.  I said yes, its like throwing baking soda on a fire in a oven.  Back UP on steroids.  We went from 1ml to 4ml.  We have been paddling in the 1ml canoe for months and months now.  I remember when we tried to go completely off and it was a no go.  She increased his cell cept dose from 2.1 to 2.25.  A smidge.  I asked about methotrexate.  We increased that from .7 to .75.   Another smidge.  She gave me other things to think about like adding Cytoxan back in with Rituxan treatments.  I think someone just reached into my chest and ripped a part of my heart out.  It physically hurts.  This disease hurts my feelings.

The doctor went on to say she just wonders about everything with Gary.  She said they talk about Gary quite often.  They are having trouble understanding why things are going the way they are.  She said he is one of there harder cases.  She expressed the "what if" factor to me.  Giving me a glimpse of her own humanity.  She asks herself, "should I have started Cytoxan right away, as soon as you were diagnosed."  I reminded her that is was only 3 weeks after diagnosis we crossed that bridge.  Not one of us could have known he would go down that hard.  I told her Gary has clearly proven he has a moderate to SEVERE case of JDM.  Not light, not mild, moderately severe.

When I first get all this information, it never hits me right away.  I am level, focusing on the information the best I can in a logical manner.  I have too.  Then when I am alone, it hits.  I cry.  I was thinking about perspectives.  The perspective of at least he is alive, or look how far he has come, or we are lucky to have the care we do.  But you know what~  that doesn't take away the pain.  It soothes it to an extent.  Sure, there are mothers that have walked there babies hand in hand to heaven, and had to turn back to earth.  But you don't think that door is there in that room, hiding in the darkness.  A possibility.  Yes, I have no idea what it is like to have my child die.  I mean that is huge.  The imagination of that pain is more than I can put my arms around.  However, I don't think that should take away my pain or validation or take away from my situation at all.  Hearing, "think about starting Cytoxan again", puts another notch on that hidden door in the darkness. It is similar to hearing a Mom talk about a healthy child having difficulties with potty training or behavior problems or normal things.  I want to think, just be thankful he or she is not on steroids.  My pain should not take away from there pain or concerns of there normal healthy child.  They deserve the validation and the acknowledgement, just at that perspective.  Perspective is a great coping tool, but not a solution.  I think it is somewhat unhealthy for your heart and soul as a mother to completely lean on that all that time.  "Well at least he is not in the ICU or something terrible like that".  That helps a lot, but in the process of everything, I still am sad, and I still hurt, and I still need to talk about it.  I am so sorry to ramble on about that.  I just get tired of trying to down play what we go through.

Done with that.

So other fun things we get to think about.  She possibly wants to move the pamidronate infusions to once a month, instead of every three months.  Last time they said lets think about it, we were being scheduled.  So I am preparing for that.  I am learning there language means different things sometimes.  She also said to me three times.  If for some reason you need to come in before your next appointment.  Like she expect we would need to be seen before our next scheduled appointment.  It struck me not odd but maybe more concerned.  She wants me to make sure I advocate.  She wanted his MMF levels checked.  She had no idea you could even do that but apparently you can check if the cell cept levels are registering in his blood?  We knew you could get a tacrolimus level, but not a MMF (cell cept level).  She just wants me to make sure I push to have it done in case it gets pushed off with everything else going on with him.  Hopefully notes will be passed on properly.  The nurse called while I was typing so it was nice to talk to her about everything that was talked about.   She said, *wow, you went over a lot of things didn't you.*  I was curious about if they rheumatologists ever disagree with each other about treatments.  The nurse eluded to the fact that sure, but with Gary, she is sure our main doctor will agree.  Her notes said she thought he maybe having a mild flare.  So with labs headed in the direction they are, its confirming all that. 

So in review,  will we need to start cytoxan again, along with Rituxan?  Will they move the pamidronate infusions to monthly?  How long will be on this increase of steroids?  When will his labs start heading back down?  I will ask Gary and get back to you.  I wish a crystal ball would work but God knows so that is good enough for me.

Rituxan Ran Again

We had our Rituxan infusion on Friday.  I was having anxiety a bit last week just trying to figure out why.  Like my last post stated Gary suddenly was doing so well, and on his own.  No drug changes, nothing.  Rituxan is a 11 hours infusion.  So that automatically bumps you to being admitted.  Before being admitted, you stop in at clinic for a little chit chat.  I was prepared to try and maybe wiggle out of this one.  The intern came in first.  I have seen her before in years past.  (Today is our 2 Year Anniversary!)   She took diligent notes.  She seemed to be very interested in every aspect of Gary.  It was refreshing in a way.  To be listened too.  She even entertained the fact that maybe, just maybe we would hold off on running the Rituxan.  I liked her.  She said she would go talk to the senior doctor, let her know how well Gary was doing and she would be back.    We were in clinic for quite awhile.  But no bother.   The senior doctor came in.  We had been seen several time by her over the years.

She had a much different take on everything.   She noted Gary had improved.  She was glad for that but it didn't matter.  We weren't there for what I thought we were there for.  She explained that in the Rheumatology Department meeting which happens every Thursday Gary was discussed.  Gary's main doctor had noted his slow down and his labs going up, but that wasn't her concern.  It was explained to me they were running Rituxan again sooner because of the calcinosis.  I was a little dumbfounded.  Oh.   ok.   Guess I can't argue to go home. The other bigger kicker was that this decision was made even though the labs we had taken a week before to have his B cells checked, had not even come back!   The B cells aren't back but they still wanted to run it.  What I don't know.  Why would they do that  if they are not being made.  What I do know:  They have been doing this a lot longer than I have.  Gary outward presence had improved, but he continues to get new deposits.  He even had some new ones in the top of his shoulder I thought I felt.   He has four new ones on the back of his elbow.  The ones in his hip that was effecting his walking a little I think are most concerning for everybody.  But he has been complaining less so that is a good thing.  Needless to say but she was pretty confidant.  We were able to talk about Gary's voice.  We have lovingly nicknamed him Gollum.    Gollum is the little troll character from Lord of the Rings who has a raspy voice.  He literally will lose his voice.  I asked if the calcium on the front of his throat could be effecting his vocal chords.  She worked through it and tried to get a feel if the deposits were that deep.  She talked about doing a xray to see just how deep they go in.  Even if they knew that is what was making his voice hoarse, the fix would be surgical removal of the calcium.  Not necessary at this point.  She was pretty sure however, it wasn't possible.

After an hour and half in clinic, we went ahead and checked in.  It didn't take long to get admitted.  I informed  them that it was our two year anniversary this weekend, and we would love love love a window room. Children's Hospital is currently expanding.  In front, was a large crane.  A cranky!  When we pulled up, Gary was so so excited.  Did we get a window room?  Of course not.  Quite the opposite.  I even told them,  "what are doing?  I am not kidding.  I wanted to window."   NO.  We were put in the room with the cutest little guy.  He was about one and a half I would say.  He wasn't very loud or anything so what can you do.  Just go with it.

*Nurse review*  First nurse who we were checked in with.   F.   Fail.   She did nothing.  I believe she putzed around so she did not have to deal with the infusion at all.  We had this conversation in the beginning about angry parents and medications not coming from pharmacy fast enough.  I said something to the effect of "don't take it personal".  She laughed shyly as if to set the stage, "well I do take it personally, its out of my control when the orders and medications come."  We got into the room at around 4.  She shifted out at seven.  The only thing we accomplished was the IV start.  I even heard her take the call that the Rituxan was ready at 530.  She apologized and said she wouldn't not be getting anything started because she had other patients.  She said it wasn't safe.  I just somehow don't believe her.  Our next nurse was so VERY VERRY good! So she made up for it.  When the nurse came to say, "I'm going home, sorry about the delay".  I said, "great, thanks."  Think she got the message.  Right away she started the premeds.  She started them wrong but at least she could right down she did something.  She was suppose to run the benadryl but got the steroid going. I assumed it was the right one because she gave him tylenol.  She was ready to go home.  Basically hung it up and ran home.  That's ok.  The next nurse made up for it.

**Update**
Just want to say I realize they have a important difficult job.  Just because a nurse does not do things in my time frame means there is a reason.  I  would rather the nurse delay our infusion then do it unsafely.  So I take it back.
http://www.komonews.com/news/problemsolvers/121605949.html

Our roommate at about 6:30 became motherless.  I heard his Mom say, "ok, I'll be back tonight."   I said out loud as she left the room and he began to sob, "WHAT?  NO  YOU HAVE GOT TO BE KIDDING ME".  The little baby sobbed for "Mama".  I just sat there in shock.   He cried and cried.  Sobbing for "Mama".  An intern doctor came in to ask me a question, I couldn't answer.  I just stared at the curtain with the very distraught child behind it.  "You people cannot possibly expect me to sit here for hours on end listening to the poor baby sob for his mother.  Do you know what it does to me?"   I mean it literally put my stomach in knots.  It's not my child, I have no business going to pick him up and care for him as he is all alone.  The nurses cannot stay with him.  The nurse KNEW IT too.  She knew that the Mom was going to be leaving.  That is why she gave me the "don't hate me speech".  It was really hard.  It puts me in a compromising, moral implicating situation.  How can I as a mother, an adult, a human being with even an ounce of decency let this baby cry and cry.  I tried my best to keep his video playing try and distract him from his abandonment.  His cries got sporadic as he tired out.  He would nap then suddenly scream out for "mama".  She never came back.  "Mama" never returned that night.  So all throughout the night he would cry for her here and there.  Grandma came in the morning to be with him so that was good.  I know he was safe but I can't imagine what the how the child must feel with whatever had him there.  He had  J tube and a central line so he was a frequent visitor of  Children's.  I don't like to judge people.  I know its not what I know, it's what I don't.  I just don't understand how they could do that to us.  My husband tried to get them to get us into another room but they explained it just wasn't going to happen.

*IV Start*:   We got it on the first try but note to self, Gary is having a reaction the numbing cream.  We numbed his hands and hours after the IV was done and in, he had a red circle burn looking mark on the top of his hand.  The nurse said, "yes, it looks like he may be allergic or having a reaction of some kind to it." That kind of stink because he hate the J-Tip which numbs with a quick air blast.  I hate that one too.  Looks like it hurts but I am not sure what to do at this point.  Wishing I would have done the port thing two years ago.  But at least we still have good access to veins.  Gary had lots of anxiety over this one.  He tried to make himself throw up he was so upset.  But after it was all over, he wanted his choice of a surprise from the prize box.  Well it wasn't around.  The nurse came back with beanie babies.  He looked at her and said, "those not toys" sniffling.  I apologized to her and said, "we have been doing this for two years now, he knows the ropes, must find the surprise box."  I think one day I will make sure each procedure room has that box.  It's full of all sorts of things like footballs, baseball hats, cars, ect,.  It truly does make the difference for children having IV's done.

At 2am Gary woke up.  He was hungry.  I always stalk up with chocolate.  It came in handy.  He ate a snickers.  Then some cookies.  And other things.  Oooppps.  Lots of sugar made him have a little glucose in his urine.  So they commenced with checking his blood sugar which was 344.  Wooops again?  Talk about bad mom, lol?   They talked to me about the possibility of why that is bad.  I tried to explain he ate a large amount of sugar.  The morning rolled around, they checked it again, and it normalized itself.  I asked the rheumatologists if I should be concerned.  They pssshhhhhed it off.  They said it was to be expected with all the drugs he gets.

We were all tired.  Gary was unstable.  They did a great job of discharging us and getting us out of there the next morning.  Gary had his first T-ball pictures that morning.  We were pretty certain we would miss them.  We made it however, in just the nick of time!   I put him on my hip and was running across the field because I could see them assembling for team picture.  "Wait!!!".  One of the parents spotted us, and held it all up.  Very triumphant.  Gary was good.  Pale, sporting his band aid but he was there.  I didn't want to push him but with the help of the steroids he was feeling energetic.  After the game he was his typical unpredictable, homicidal, psychotic, steroided out four year old we all run and hide from.  He cried and cried and temper tantrum'd a whole lot.  The next day he was angry.  He even told us he wanted to kill us.  Oh good.  Let's choose a different hobby Gary.   We had done some grocery shopping out of pure desperation.  We had no food in the house and was suppose to be celebrating Mothers Day the next day so it was a truly we had too.  We bought him a little golf set.  When we got home, he didn't care it was pouring down rain.  He insisted.  I felt so bad for him.  He just doesn't know how to express how he is feeling and it comes through.  So there, in the pouring rain, cold and crying he played putt putt golf.  I bet he has such a hard time understanding the way the drugs make him feel he does whatever feels good.  It was pathetic.  His beautiful sister, who is so amazing with him, stood out in the rain with him, holding a umbrella over him.  Helping him with his every move.  We all would have done it but Gary chooses who, and he chose her.  She, in her nine year old beauty, is going to make one fantastic mother herself someday.  So beautiful and nurturing.

The next day we woke up and celebrated Mother's Day.  Gary was a little better, but still feeling very aggressive and very angry.  Breakfast in bed, awesome cards!  : )  LoVe.   We went down to see Grandma and bring her mothers day stuff.  She wasn't feeling up to coming over so we came to her.  Gary enjoyed stopping in.  He wanted to stay and play.  So cute.

We came home and family came over.  We celebrated Mother's Day with my Mom and sisters and celebrated McGuire's 12 birthday which is on Tuesday.  We had a pizza off at McGuire's request with him being the judge.  It was  a lot of fun.  My son has such a big heart.  He felt terrible not being able to pick everyones pizza as the winner.  He told me later he didn't want to do that again.  LOL.  I tried to tell him it was fun and not to sweat it.  So blessed to have a good family.

It's all still really tough on our family.  I find my family sometimes doesn't want to talk about what is going on with Gary.  I still have days were I feel upset.  I feel upset over this whole Rituxan thing.  I need time to recover.  It is really hard on our family. The other kids do there best to understand but all's they know is they have one angry little brother who throws grand tantrums that are loaded with the pain.  Not physical pain but pain you can see coming from his soul.  I know it will bring us closer though and open us to feeling and emotions we otherwise wouldn't have the chance to deal  with experience.  Without it, we wouldn't grow and learn.  God grand plan is at work.  I can't wait to see where he leads each and every person in my family with what we have been through with Gary, and where we are going.

Great Weekend

So Gary has been doing really good.   He had a much better weekend then he did last weekend and this past week.  His skin looks really good.  So I am feeling better.  He still has a hoarse voice but his energy and walking up the steps have improved over the past few days.   Welcome to my roller coaster ride!!!!!!!!!!!!!!!!!!  My husband and I agreed to watch him this week, see if he maintains his improvements.  I wonder if his levels improved.  Not sure it works that way but we are feeling a little better at least.  I still think it is important to run the Rituxan again.  I am assuming they want to do the infusion again because those b cells are back.  If they are not back, depending on how he does this week, I would like to think its ok to hold off.  But then again, what if its the good ol, its not what I can see, it's what I don't see.  From Fear to Fun, back to fun then rear ended by fear again.   What would you do?