Monday, September 17, 2007

The week before Remicade

It comes around so fast. The week before Remicade is always so painful. As the Remicade wears off, Katy’s symptoms return with a fury. It is all she can do to hold on. Remicade works very well in her body for five weeks. Until the Remicade protocol is changed for Chrohn’s patients, it can not be given any closer together than six weeks. I guess it has to be studied and proven first. Katy called her doctor this morning to beg, but the answer was “no”. It is a hard situation to be in; to know relief is just a week a way but have to live through agony until then. The NIH is starting a new program to study the effects of certain medications on the bowel problems of HPS. The answers can’t come soon enough for people like Katy. I wish them well and hope for the sake of those yet to be born with this syndrome that their road to normalcy will be less bumpy than those who have gone before.

Katy and I have been keeping very busy during the week. Qavah is homeschooling and Annelise is now able to crawl into the center of all the activity. She is a social butterfly and likes to babble as though in conversation with us. Katy usually ends up with Qavah, and Annelise and I go to the kitchen for meal preparation. While all that takes place, Katy is supposed to be studying, reading, and preparing to write her final paper. I usually tell her that I can manage both girls so she can work but she’ll ask, “Why do you get to have all the fun?” And it is fun, and sometimes when life is hard it is better to have a little fun sprinkled in with all the tough stuff. That’s a good question, Katy! Why shouldn’t we have a little fun!

Comments:
  1. Jennifer Blugerman Says:

    An image to think on while you’re not feeling well, Katy…

    This morning, we headed out to the beach and the kids jumped right into the giant sand pit they dug yesterday. While they were busily employed, David and I set up our chairs and just stared at the sea. The waves were teeming with life — tiny fish, millions of them, were visible through the sun-caught crests of water. The water seemed effervescent — bubbing like a freshly poured soda! You could hear the little popping and hissing as the fish swirled back and forth at the top of the water. Then, God added to our delight by supplying a pod of dolphins, just 50 feet from shore. They too were enjoying the schools of fish, but for different reasons! haha! We watched them arch gracefully in the water, and once in a while you could see one riding a wave just under the water! And I thought only people body surfed! :-) I looked over at David and said, “I think dolphins know they’re cool!”

    We are praying that Remicade day come quickly!! We miss you all!

    -Jennifer

  2. Sandy Says:

    We will pray you through this harder week, Katy, as you await the next Remicade Day.

    I think with two small girls in the house, I’d also rather have fun with them than stay at work all day too! At the beginning of my second year of teaching, I was swamped with work one weekend but snuck over to my cousin’s house to hold her then 13 week old little boy for a little while. I was pretty stressed when I got there, but just holding him while he slept and keeping time with his breath was enough to really ease the stress. He is now a very active two year old who still helps me keep things in perspective and adds so much joy to my life!

    Sandy

  3. Trisha Ferris Says:

    Katy,
    I’m praying you feel well enough to swing with Qavah & Annalise.
    Trisha

  4. Karen Tillman Says:

    Katy,
    I will pray that God will give you the strength to handle things til the next treatment. I do know how frustrating this can be, but on a somewhat different level. Question, there is a drug called Humira, it is basically the same as Remicade, but it is an injection that can be given evry 2 weeks and at home with no hospitalization. It is also made from human synthetic rather than the mouse synthetic that Remicade is made from. I don’t know if you guys have talked to anyone about this or not. I am currently looking into it, but probably will not be able to afford it. The cost for 2 injections a month in this area is approx. $1,689.95!!! I also don’t know much about side effects either, so if you are interested, I would highly suggest doing much research and as always follow the advice of a medical professional as I am just a patient asking a question, and looking for a few answers myself.
    Love and prayers
    Karen Tillman

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