Tuesday, August 18, 2009


We are back home from our weekly Cytoxin and Methotrexate treatments. Gary is doing. He is doing OK. We suddenly have a return of raging rash activity in his skin. It has me a bit worried with increasing levels. The doctors are talking about adding new drugs.
He has not been this raging red since May when we were first diagnosed. No we were not in the sun. This picture was after an hour after his IV was put in BUT this is not his normal. It is really tough seeing different doctors each week. It may be time to but our back up plan into action. DR. P Our main doc was not there this week so I had to deal with all the nonsense. Nonsense of starting a drug that I thought we should be on. There talking a completely different one then our doc talked about. "Maybe Cytoxin isn't his drug." Maybe I should lay on the ground and kick my feet and grit my teeth and scream right in the middle of the hospital. I know that will get me know where. Profanity. His levels were good I guess. The one that was up last week won't be back until later this week. I fought to get the tube out but I lost my debate. It ended with this. "Do you know how to administer the heimlich to a toddler? What if he was choking on a hot dog. " My reply, "I don't give him hot dogs. There high in sodium!". We had to increase his blood pressure medicine because that has been up since last week. Obviously we did not do any tapering this week of his home steroid. His knuckles and hands have begun to break out again in the Gottrons Papules . Would make no sense to taper off again. The activity in his skin especially on his face is evident. I assume they will be calling me this week to discuss. Or not since we go back in on Monday. My positive piece for this entry, we had our own room. No hallucinating patients this time. Nurses were great. I love loved our nurse when we got down to the our room. She was on top of everything this time. It must have been National Intern Med Student day or something. A whole lot of them were peaking through the room. I would have let them in but he was fast asleep. Next time.


  1. good evening Erika,
    What a week you have had. I took a week off and went camping, and got a breif update from Robert yesterday when I called him at work. I wish I had some words of comfort to say to you, but I will let some of God's music take care of that for me. On the CD's I sent you, listen to these songs and let me know if they help comfort your busy mind, racing to find peace for your precious son, who is going through a huge struggle......
    Whatever you are doing - sanctus real
    Peace be still - Rush of Fools
    For the moments I feel faint - Relient K
    He won't let you go - The Kry
    Take my hand - The Kry

    Please take heart that God is in control and the doctors, although most of the time they seem like morons, they are doing their best to help your little man get better. I will leave you with this,with God's grace and loving friends and family, you will be truly blessed. Until the day when we get to finally meet,

  2. Lynn,
    I cannot thank you enough for holding my hand through our Heavenly Father. I love hearing from you. I love your words of encouragement. I love your patience for my tantrums towards the doctors. I have always tried to go by the concept that they do not control what his body does. They can only treat him. It does become challenging however when logic comes into play and I forget who really is in control. All my love and thank you again for always answering even when I don't ask because I need that.

    PS I am so happy you went camping! I hope you had a wonderful time.

  3. I have cried for you today so you don't need to. I understand and remember those frustrating days. I wish there was a magic word to say and a wonder drug I could tell you about, but there isn't. I have already said a special prayer for you guys and I will continue to pray without ceasing for your family and especially Gary!

    I know that being the Mama Tiger you are you will demand the best for your child and be insistent that he gets the treatment you feel he needs. Be tough and stand strong. It is not their baby it is yours! You have hald him and carried him this far and you know his needs more than anyone else! Remember God won't give you more than you can handle. (even if sometimes we feel insanely close to that limit!) Just remember that God has faith in you!

    You are in our prayers!

  4. Just a hello from us and letting you know that we are with you in spirit. I keep you in our prayers and hope that the good days will out number the bad days this week.

    Loving on you