The word “negative” can mean different things at different times.  Usually, negativity is used in a bad context.  In the Arnett Family, negative is a term that we use daily.  Even little Wesley uses it.  It is not always about something bad.  Here at our house, if Wesley is “negative” we all do a little happy dance.

I am not talking about Wesley’s attitude.  I am talking about the amount of protein (albumin) in his urine.  We check Wesley’s pee every morning for protein.  It is always a little scary, even when he has had a few months of remission.  You just never know when it’s not going to be negative.  And we have learned that it can come at any time.  Usually, when we least expect it.  Trust me, NS parents love, love, love the word “negative”.

Well, today was one of those days that we all clapped our hands a little and jumped for joy.  Wesley’s pee tested NEGATIVE for protein!  HURRAY!  This was only after 3 days of being back on the high dose steroids.  Normally, it can take a week or even a little longer to get to this point.

I talked to Wesley’s nurse and his insurance company again today.  The drug that we want to use has been denied by our insurance company, even after the doctor filled out a special form to get it “prior authorized”.  But, Wesley has a great nephrologist.  He is not only extremely knowledgeable, but very compassionate.  He is a super guy.  He is making an appointment to speak with the healthcare director of our insurance company to get this drug covered.  The girl that I have been dealing with on the insurance side said that it will most likely be covered.  I feel like we are actually getting somewhere.

I am scared that I am fighting so hard to do something that I am so scared to do.  Rituximab seems like a promising drug to buy us some time away from the steroids, but it has a black box warning.  A black box warning is a type of alert that appears on the package insert for certain prescription drugs. The U.S. Food and Drug Administration (FDA) can require a pharmaceutical company to place a boxed warning on the labeling of a prescription drug, or in literature describing it. It is the strongest warning that the FDA requires, and signifies that medical studies indicate that the drug carries a significant risk of serious or even life-threatening adverse effects.

We feel that with the knowledge that we have about this disease and the other drug treatments, this one is our best choice.  The nephrologist strongly feels that this is our best option, and we have gone for a second opinion and they agreed.  It doesn’t make it a bit less frightening though.

Atleast we are moving forward.  Just pray that it is in the right direction.

Just remember, negative can be a positive thing!


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