No Pain, No Gain...

    How many times have you heard that before?  Maybe it should have read "no BONE pain, no NEUTROPHIL gain".  Maybe that isn't completely true 100% of the time either.  For us, bone pain is not a constant but is certainly an unwelcome guest!  Mileigh and I take a minimal dose of GCSF, also known as Neupogen, daily.  This method of dosing is effective for us on multi levels.  The frequency of bone pain is severely lessened and the window of opportunity for infection is narrower.  We still drop to an absolute neutrophil count or ANC of zero every two weeks but bounce back quickly for the majority of the time.  However, there are times that viral or bacterial infections find our bodies at its weakest. 
      I have experienced excruciating bone pain as a side effect of this drug.  That said, this drug has often saved our lives.  I've often been asked to describe this pain and the best I can do is that it's almost electrical.  It is deep within and wreaks havoc on the bones it invades.  Its source is from mass production of neutrophils in a space not equipped to handle that volume of cells at that speed of production.  The cells lump together in a race to the blood stream causing the long, marrow producing bones to pulse.  That, for us, is the pain.  The pain, while it's severe, also means that our bodies are doing their part by responding and bacteria fighting cells are on the way! 
     Relieving this pain is often by trial and error.  For some over the counter relievers work well and that's great.  For us, not so much.  We have prescription strength medication for those intense times.  That's typically a last resort.  Hot baths work extremely well as do heating pads.  Compression of the specific bones almost alleviates the pain entirely but is short lived.  I've asked Chad to physically sit on my hip with me lying on my side countless times to compress the hip and spine.  I've held Mileigh in my lap with the heel of my hand into her sternum many nights.  Speaking of nights...our experience with bone pain comes mostly at night.  In my opinion this is due to the body naturally swelling at night as the fluids settle. 
   I often wonder how life for us,as a family, would be different if Joeli had been given GCSF.  I don't mean that in an acute way but in a maintenance way.  I don't have those answers.  I may never have those answers.  That said, I know there are those out there who question this medication for many reasons.  I don't know if it's for every neutropenic.  I do know it's worth the research and worth the try.  I'll take my bone pain along with my neutrophils, thank you :).  I have to believe that it's all for a higher good.  Maybe my story can help you.  Maybe Joeli's voice is what you needed.  I long for the day that I see His face!  I long for the day that He puts my girl back in my arms completely whole! What a day it will be when I hear that precious voice again and spend eternity listening to her sweet self tell me of all of the ones she reached that I never got to know!  My friends, this world is NOT my home and this pain is temporary!  He is bigger than Neutropenia! I would love to hear from you!  Please feel free to comment.