Thursday, July 16, 2009


We are home from Chicago. As you know, we got into Chicago on Sunday night. Landed close to midnight. Everything went smoothly. Gary did simply wonderful on the trip. All things considering he was very easy to please. Sunday night was a little hairy with trying to make our way to the hotel shuttle. O'hare has a lot of long hallways to make your way around in it seems. The first thing we see is a homeless person sleeping in the hallway of the airport. Sure I have to be nervous, but how nice it would be to pick him up and put him in a bed. Then there was a gentleman playing the trumpet for money. That was neat, but it was late at night and the whole thing reminded me of a haunted fun house. It was fine though. We got to our hotel, which was nice. The best bed I have ever slept on. We didn't go to sleep till about 2 because we were still stressing how to get there. My sister said we needed to be comfortable as possible, and she was right. No use messing around with the L train. Up at six the next morning, got a cab, and we were off. Chicago is.......................has..........a lot streets. LOL. We made it just in time for our appointment. Took vitals, did the standard stuff. A doctor (Dr. Pachmans fellow doctor) came in and talk to us about all the medicine Gary was on. More like came in and asked what he was on. I told her what and how much. Then we came to the cytoxin. Cytoxin is a chemo drug that was started when Gary stopped swallowing. I know I have to talked about it in previous blogs. It is a heavy duty drug. This was made apparent to me in Chicago. The doctor asked about the cytoxin, how much. I wasn't sure of his dose but he gets it once a week. She looked at me and thought I misunderstood her. She said in a exaggerating tone, "the cytoxin?". I said, "he gets cytoxin once a week". She just starred at me said ok with a huff and continued to type. We had back to back visitors. The next people that came in were from the research team. They wanted to enter Gary into the research program. I happily entered him because we were there. The test were nothing that involved too much pain. They took pictures of his nailfold capillaries under a microscope. They were great about explainging things. They took a picture of mine, then his. Printed out the two photos and held them up side by side. My capillaries are evenly space and are a faint red color. They meet right up with my nail bed. Gary's has less in number capillaries. They are drawn away from his nail bed and are funny shaped. A few are dilated and curved downward away from the nail. I think this is a indication of how those capillaries throughout his body are which intern may effect how well he absords the medications? This is all so complicated. Next the physical therapists came in and watched him sit, stand, ect. Didn't say much. Then the parent volunteer came in and chatted. She was very nice. We were able to get into a deep conversation of any kind because someone else walked in who was part of the study. The parent volunteer gave me the Myositis and You, very good!

Picking up where I left off......
So I spent 10 minutes with Dr. Pachman. She was very honest with me and said that she has gotten lucky. She explained that she has hit a lot of stumbling blocks along the way but written proof is something she has been unable to produce because of lack of time with some of her results. She told me that Gary and his treatment are to far along to put her hand in it. I felt like if that is something we really wanted, for her to take over, she would have. She pointed out a lot of things that she felt were not practical. Gary is too young to travel for check-up's and treatment. Gary's case is complicated. He does not have your typical (if there is one) run of JDM so far. The fact that he is in the middle of Cytoxin and Methotrexate, I feel she would not change much or it may be not beneficial for our treatment. It is one of the things I was prepared to hear. Of course I did not want to stay in Chicago. It was all good news as far as, she didn't hold a stop sign up and say, "this isn't right." She asked me about me. Reminding me how important it was to take care of me. I know this. I find it loving and nurturing and motherly of her to offer such advice. I don't mean to sound ungrateful. But I didn't fly all the way from Seattle to be reminded of the fact I need to make sure I exercise. I don't mean that in a disrespectful way at all and I may just erase what I just typed. I do appreciate that. I really do. That is not my heart. That is the desparation and frustration talking. It is the dark unknown of what I really should do for Gary. It flustered me because I was there to find out if we were doing everything we should be doing, and I didn't get that magic answer. To have an expectation like that was a bit unrealistic on my part. She is a doctor, not a fortune teller. Only God knows Gary's plan. So I shall go there for my answer. Anyone have his email? HA HA HA HA? Dr. Pachman is willing to consult with my doctors or with one doctor. I am still trying to figure out if that is necessary at this point. I am thrilled to be in contact with Damon and Kristen Smedley, Mason's parents. I am just starting to ask questions. I like everything they have to say so far, including a comment that they considered coming here for treatment. I am in my own head right now, just sitting. I am blessed.


  1. Erika - As I read through your post it reminded me of our visit to Chicago. We too went there for magic and came home frustrated but hopeful. I wish I could wave a magic wand across each of these kids. Disease at this age seems so unfair to them. I asked Mason tonight if he was ever mad at his disease. He smiled and said "no - But you know what I don;t like - When people say - what happened" then he laughed and said "It's like they have never seen a disease before" :) It made me laugh. What I have found in Mason is a little man full of wisdom. Although the circumstances are unfortunate I know Gary is in your hands for a reason. Stay strong and don't hesitate to send me or Kristen an e-mail at any time. Stay strong you and Gary are in very good hands at Seattle childrens. - Damon

  2. Damon-It is so funny Mason has that point of few. Gary is so young and doesn't know any better, but spending a couple days at the Chicago airport trying to get home made me come up with a few t-shirts for Gary and Mason. The first one will say, LOOK OVER THERE with an arrow. You know, to deter everyones fascination. Another one I would like to do is WHAT? You have never seen a feeding tube before? Yes your little man is full of wisdom. I appreciate your encouraging words. The best thing that I can do is hit that same ball back in your court. You are amazing. Mason may not be so lucky to have JDM, but he sure is lucky to have you.

  3. Erika, your last line says it all. You are BLESSED. In the lesson I taught my pre-K and kindergarten kids, "trust in the Lord with all your heart, lean not on your own understanding"
    Gary is a blessing, and someday soon I am looking forward to meeting him, as well as you and Robert. I did see Robert for a couple minutes once but chat with him on the phone weekly at work. Above all, you are blessed. - Lynn

  4. Sorry Chicago wasn't what you were hoping it would be, but at least you know what you are doing is not all wrong. I was so excited that she said everything we were doind was pretty much on track, also we didn't really learn a whole lot until she called us back weeks later! Then I felt much better and got to ask even more questions. Also, I know that when and if we hit a stumbling block she would be there and ready to help knowing our case!

    As far as her telling you to take care of yourself she told me the same thing! And I thought hello right now chocolate is my best friend and only comfort! But, I realized later whe was talking about more than my weight. (she didn't know me before so she didn't know that I was packing on the pounds!) She meant my mental health and my overall attitude. She meant my other daughter and my mommy duties with my other child. She meant making sure my relationship with my spouse stayed strong. She understands what we are all going through and they we try to be super mom and get totally wrapped around our JDM child and the disease that we let everything else fall to the side or behind. SHe was just warning me that when everything is back under control and my world is right side up again I need to make sure that I didn't lose everything else that I loved!

    I highly recommend a fun day out with the other kids and let daddy have a day with Gary at least once a month! This makes them realize they are still important and makes daddy see everything you deal with daily. I also recommend a night out with daddy and someone else keep all the kids at least once a month! This keeps you to close and gives you and chance to spend some much needed time together! Also, one thing that we have learned and that Dr. P told us is that this is the new normal. You have to make it be normal and remember he is still a kid and has to be able to act like one!

    It is a hard balancing act, but it works! I know that you are a great mom and wife, but I also know how you feel right now and that your whole world is revolving around Gary. I did this also and when my daughter broke down about 2 - 3 months into this it made me realize what Dr. P was talking about and that I wasn't "taking care" of myself. I was focusing everything on Kya and just getting through everyday with her and going through the motions of the rest of my life!

    These things are hard to do at first, but they mean so much! Things will get better! Gary will get stronger. In a few months you will look back and things will be like they happened years ago! The first few months I felt like I was in a hurricane or a tornado! Now I look back and say "We did everything we could do and look at where we are now!" By the way we had date night Saturday night and yesterday we had so much fun as a family! I think they even need a night away from us! We are in there face 24-7 trying to take care of them.

    Hang in there Mama Tiger! You are doing great!