Wednesday, June 22, 2011


We had our infusion today.  It went very well.  Smooth sailing.  Levels have smoothed out as well.  IV on first try : ).  Our nurse was again, 10 months pregnant but did fantastic.  She didn't even look tired.  She did give Gary his benadryl right into his IV with no dilution which burned like the hot acid in his vein, HOWEVER, he quickly went to sleep like it was a night night medicine.  The IVIG going in you can tell are hard on him.  He sweat and sweat and sweat. His little heart was popping out of his chest.  You could see the blood pumping through his neck.

Gary's calcium deposits I think are looking better.  Always hard to tell.  Energy is good.  He does have a scratch on his eye that faded in and has not acted like a scratched.  But I am keeping an eye on it.  If it doesn't go away, we can say it is indeed an ulcer lesion caused by his dermatomyositis.  If it heals up, then  it was obviously a scratch.

I am having trouble concentrating.   T-Minus 3 days till marathon time.   Eeeekkkkssss.  Tomorrow we get to have dinner with all of our Cure JM friends.  Looking forward to it.  In regards to the drama going on with the foundation and the hospital,   I wait to give my opinion until after everyone has left town, LOL!!  Cure JM Mafia is in town.   You would be amazed what passion and emotion is behind mothers with this disease.  Then we are all surprised someone would say certain things.  Are you kidding me?  It's like jabbing a hibernating pregnant bear with a stick.   Not hard to get one of us to fly off the handle when it comes to gathering information on our childs rare disease.

Friday, June 10, 2011

Thumbs Down

*Thank you Summer for always giving me input*   It means so much to me!  Huggin you!  I need to catch up on your treatment myself.

Now on to the latest and the not so greatest........
Yesterday we had a clinic appointment.  There have been some changes in my life that I am very thankful for but has added a new element to my emotions and the ability to deal with all this.  I mention last week that Gary and I kind of have a job now!  So blessed to be able to bring him with me and help support the finances of my family.  Now it doesn't do very much for all the house work that needs to be done but hey, we will manage.  Just feel so excited and blessed to be involved with 18th Avenue Pasta!  I was able to take a couple hours off yesterday and get Gary in.  Here is where the element puts a crick in my ability as a mother to deal.  It was a complex meeting of sorts.  It took me off guard.  I had mentioned in my last post that I had called the nurse line to discuss whether or not doctors agree with each other amongst the department if changes are made.  She assured me all would be fine.   The nurse injected me with a confidence that they would agree.   Wrong.   Wrong-O!!!  I mean profanity, really.  Our main rheumatologist was miffed.  She burst in yesterday, gentle but in had a force behind it all.  Nothing, absolutely nothing at all was directed at me but I have a brain and can put two and two together to make it some of my fault for not saying, "hmmm, lets check with our main doctor before we make this change."    Big problem is I agreed with the increases.  Whole heart, agreed.      Main docs problem, she wanted to give the Rituxan a chance to work.  Now we won't now whether its the increase in medications or the Rituxan working if we see results.  I am just purely exhausted.  After a late meeting, and not being able to sort my feeling and thoughts out right away because I had to shift my focus back to working, resulted in a good long hard cry.  I am a little frustrated by all this.  I feel like I messed up by allowing it, fouling up his all of our efforts to get him off these drugs.  Yep.  I know its there job.  But its mine too.  I am so in favor of aggressive treatment, and often go on fear which maybe makes my decisions irrational because of my strong maternal connection to my baby.   I want him better.   I want this disease stopped.  Completely.  Not just some of it.  All of it.  His calcium increased since the treatments, which granted it has only been weeks.  He does have some nail folds that look good, and a few that look terrible in my opinion.  Like I said when you can see capillaries bursting without any instruments, disease activity is present.  We discussed his hoarse voice.  This month, some days, I was constantly asking him to repeat himself because I couldn't hear him.  We did an xray's yesterday to see if they could see any calcium that is causing it.  *Thank you Summer for telling me about how your voice does the same*  If they see anything, she will show a ENT doctor and see if they want to see him.  Gary's strength is great.  She doesn't thing it is from weakness of the muscles in his throat or vocal cords.  I want to agree with that but I can't be sure.  Think I need a vacation.  I would be very surprised at this point if they put him on Cytoxan with the Rituxan.  Not after talking to our main doctor.  I see both points of view of the doctors and the why and why nots.  Really hard to say, "hey I think your wrong" to anybody because I don't know either.  The doctor that made all the increases took time to look at the big picture.  I asked her if she saw his labs.  She said yes, and only one was elevated and they believe it was a lab error.  WTF?  Yes I said it!   I was told all of his inflammation markers were up, and were on a upward trend, which I had been tracking that too.  I reminded her another reason I had agreed was due to Gary grew.  When he was three, we increased all meds.  He turned four.  He is bigger.  Needs a little more.   Really people.  I went to a community college.  This shit is gonna drive me a to a looney farm.  Yep,  just lost all class didn't I?  Now that I have injected the vulgar of profanity into my blog, I will drop to my knees and pray to Jesus.  I ask He forgives me.  I ask for answers, protection, peace, and clarity.  I ask for strength and intelligence.  I am so very thankful, even in the midst of my knotted tummy, and tight heart, for the medical care we receive.  I am so very thankful and feel blessed in the midst of it all.  I ask He helps me focus on that.  I will trust.  I will love.  I will be thankful because I am.

Wednesday, June 1, 2011


Gary is doing well since his Rituxan doses and steroid increase. The only thing that is bothersome is the calcium. It seems to be on the move again in my opinion. I am noticing more and they are increasing in size. I noticed on Monday night. Every couple nights we sit down before or after bathing (preferably after ; ) ). This time I called my husband in the room to see what he thought. It seems bigger, more solid in his thighs. Around his hip they were protruding enough you could see them without having to touch. The calcium around his elbows is doing just that. It seems to be trying to make a ring around his whole joint. He has a whole gaggle of deposits around tail bone. Now when he bends down you can see them quite well as to before you couldn't. Energy, TOP NOTCH. Pretty normal for a four year old I would say. Steroids have increased his appetite at first but he seems to have leveled out a little with that. I notice very little weakness. His voice is still hoarse, but has stayed the same. I thought he may have had a mild case of thrush again but I will continue to be vigilant with that. Both him and his sister had small small cold sores in the sides of their mouths. But no one was feeling ill, eating, peeing all the rest just fine. The calcium in his thighs is stopping me from holding him on my hip. If he straddles my hip, it presses on the calcium and I get an ouch. Great news is he stopped complaining about his ankle pain and knee pain. His toes are still crossing but we will keep an eye on it. Speaking of I's! Gary's vision is great. No signs of toxic effects from all the drugs. Check back in six months.
 : )  So while the calcium still continues at least his cuticles are looking better.  We need to give the Rituxan and the increase of drugs time to work.  The only aspect of that I don't like is we still are in search of what it is that will shut this off.  They say if the calcium is increasing, then process of his disease is still going.  I suppose keeping him healthy with toxic drugs of course until it decides to stop?  Everyday I have questions.  Everyday not even the doctors know.

We have been staying so busy. Gary and I started a job! Our family is now in the pasta business. We have done to local markets. The pasta is beautiful! My awesome cousin makes it. He started his company last year and asked us to join him. Gary is amazing when we go. We have long days but its only on Tuesdays and Thursdays. I am so thankful I can bring him along. I still need to make sure I am focusing on Gary and his treatment, but since he is with me that is easy to do. We have a tent we sit under so the sun is not to bad. Just need to make sure we are staying protected. It is difficult on a single income so we are going to do what we can : ). Summer vacation is coming so we will have more helpers.

View photo.JPG in slide show
Here is our pasta stand.
 18th Ave. Pasta Company
Still training for the full Rock n Roll Marathon coming up quickly on June 25th.  Still training for the STP coming up quickly on July 9th.  I did really well fundraising this week.  Thank you to everyone who donated so far! Almost half way there!   Here is the video we posted on our facebook in honor of donations.