Another Hope Update: during infusion #4

February 20, 2012

Here we sit, 3rd floor of Clinical Care Center, Texas Children’s Hospital, Infusion Center, seat 7.  How’s that for location explanation?  🙂

I forgot to buy more sugarfree sour candies at the grocery store on Sat. so this morning, praise the Lord, I was able to get Hope out the door a few minutes earlier than usual and head to Kroger to buy more.  Little did I realize, Kroger doesn’t carry sugarfree, sour candies, so I had to back track and drive to HEB where they have not only sugarfree Jolly Ranchers but sugarfree Crystal Lite candies.  So, there you have it.  Shop at HEB for all your sugarfree candy needs.  *ha*

Traffic was not bad and we made it into the parking garage and into our space before 9 a.m.  Woo hoo, thank you Lord! They are running a bit behind today, so Hope is already resting comfortably in her recliner with a pillow, blanket, vitamin water and the old movie Aristocrats playing.  I’m afraid she’ll be done with the movie before the end of her infusion.  But, if this happens, I’m sure we’ll find something else to do.

Well, Hope is still taking calcitonin injections every 12 hours for her high blood calcium, but 3 weeks ago she was finally diagnosed with Sarcoidosis and we began a new treatments.  She’s taking 10mg of Prednisone daily and a Humira shot every 2 weeks; but we had to skip the 2nd dose last Thursday due to a cold she’s caught.  I thought she was beginning to get over it but it seems to be pretty strong right now.  Not sure when I’ll be able to give it.  The interesting thing about Humira is that it is an immune suppressor.  We want to give this to her to help with her disease because it keeps her body from producing all this inflammation; but giving it makes her more susceptible to infections.  So, while we’re not giving it to help her get over her cold, she needs it to help with her Sarcoid.  Trusting the Lord to heal her from this cold in His time so that we can proceed with her therapy.

I do believe the medications are effective as I’ve noticed her walking with more ease and the swelling in her knuckles and toes going down.  Taking the medication, however, causes her to feel nauseated or an all-over feeling of malaise (a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify) often but we’re trusting that the final outcome will be beneficial.  She has gained a little bit of weight over the last month but it has been minimal.  She’s also not experienced the puffiness I thought she would encounter from the steroids.  I’ve worked very hard at keeping her sodium intake at a minimum and worked at keeping her carbs down.  She has been very compliant with eating as she’s told and not complained much.  Very thankful!

Thanking the Lord for His faithfulness and mercy in her life.  Praising God for who He is and His dealings with His children.

Jeremiah 31:3b I have loved you with an everlasting love; therefore, I have continued my faithfulness to you.


2 Responses to “Another Hope Update: during infusion #4”

  1. Kerry said

    Thank you for sharing. Praying for you, Hope and the entire family. Encouraging words and verses to you and to us. As a wonderful saint recently gave me words to say…”Just trusting God.”

  2. David and Betty said

    Magnify the Living God!

    Thank you Shari, and let us praise God with you.

    We continue to pray daily.

    We love you all dearly.

    David and Betty

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