Posted by: Taylor | April 8, 2014

Big Update and Lots of Prayers Needed:

We’ve had a lot of activity today.  We have seen Bethany’s liver doctor, Dr. Romero, the pain management team, the oncologist, the infectious disease team, and the transplant team; not to mention, the chaplain, the child life person, and the psychologist.

I have a lot of information to communicate.  The best way to share this is in bullet form, so here we go (If you’re reading this on facebook, the bullet points will not show up.  Go to the Caringbridge page or my blog to see this update with the bullet points.):

  • Bethany had her MRI last night which showed no change from last Tuesday.  We were hoping to see the reduction of the growths.
  • Bethany’s CMV and EBV numbers have increased slightly.  We hoped these numbers would decrease significantly since we have removed Bethany’s immunosuppression.
  • Because there is no reduction in Bethany’s CMV or EBV and the growths have not gotten smaller, we will now proceed to treating the cancer with more aggressive therapy (i.e. – chemo).  We might start this therapy later today (Tuesday) or tomorrow morning (Wednesday).
  • We are also dealing with several complications:
    • Bethany’s Hemoglobin and white blood cell counts are both very low (Hemoglobin – 7.4 and white blood count – 850).
    • To counteract Bethany’s low hemoglobin, she will receive a unit of blood in about an hour.
    • Bethany will also receive an infusion of IVIG.  This is an infusion to help with her white blood cell count.
    • Further, Bethany will undergo a bone marrow biopsy in the morning to see if the cancer has spread.  This would help explain the low white blood cell count and the low hemoglobin too.
    • It would seem that Bethany is not responding to the anti-viral medication meant to treat CMV.  The infectious disease team has recommended a different iv anti-viral medication.  The CMV is making it more difficult to treat the EBV and the PTLD.  It would really help the EBV and PTLD if we could get the CMV under control.  Further, the CMV is complicating our understanding of Bethany’s low white blood cell count.
    • Finally, because Bethany’s white blood cell count is so low, she is at a high risk for other infections.  This can become a very serious problem and complication in treating Bethany’s cancer.  Bethany continues to run a high fever (102-103).  We really need her body to start fighting off these infections.

As you can see, Bethany has a lot on her plate right now.  Keep the prayers and encouraging notes coming.  For the time being, we will be staying put in Atlanta for at least the next 2 weeks.  I guess there is a chance that we’ll be home for Easter, but we know it’s more important to get Bethany healthy and stable.

How to pray:

  1. Healing!  No more temp and lower EBV and CMV numbers.
  2. Pray specifically that the chemo therapy will kill the cancer.
  3. Pray Bethany will respond to the new anti-viral therapy and that the CMV will go away.
  4. Pray for Bethany’s bone marrow test tomorrow.  Pray specifically that we won’t find any cancer there.
  5. Pray that Bethany won’t need any more blood transfusions.
  6. Pray for Angela and I as we attempt to figure out how to manage everyone’s schedules over the coming weeks.  We really don’t know how long we will need to be here in Atlanta.
  7. Pray believing that God has already heard our prayers and that He is healing Bethany.
  8. Pray praising God because He is going to receive honor and glory through this no matter what.

Thank you for your interest in Bethany and our family.  Thank you for loving us and praying for us.  We love you too, and know that God is using this to grow us and draw us to Him.  Please use this and every opportunity God brings you to tell others of HIm.

Sorry for such a long update.  This one is kind of important since so much has happened today.  Bethany’s doctor told me today that things would most likely get worse before they get better, but he does expect them to get better.

We love each of you, and keep you in our prayers.

In His grace,
Taylor, Angela, Bethany, and Jonathan


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