Update on Ashley - 7/28/2010

Dear Friends

The PET scan revealed that Ashley’s bone marrow is inflamed. Not just in several locations, but basically her entire bone marrow. This is not typical of cancer, which would show certain spots as being ‘hot’. Doctors remain puzzled about cause. Her cancer doctor has mention several ‘possible’ conditions, but at this time are merely speculative.

He does ‘feel’ that, based upon the bone marrow biopsy, and extent of the ‘hot spots’ revealed by the PET scan, again, that this is not cancer. Plans had been to do another bone marrow biopsy if scan had revealed a particular hot spot. With the extent of the inflammation, he is proposing to do surgery on Thursday/Friday to take a small section of rib. This would provide them with a much larger and broader sample to analyze, which would include bone marrow, bone itself, and the surrounding tissue. Before proceeding, wants to consult today with doctors who specialize in bone marrow disorders/diseases.

In order to do the scan, they had to withhold some of the pain meds, and since they were unable to do the scan on Monday, Ashley’s pain management went out of control. The last two days have been hard on her, with regard to her pain, with many of her muscles being exceedingly ‘tight’, and difficult/painful to move.

One positive note - the scan did show that the cancer trial drug from Boston did have a positive impact on her clear cell sarcoma tumor, with the scan now showing it being ‘less hot’. Unfortunately, at this point, future treatment with this drug is out of the question, until there is firm understanding of the cause(s) of her current condition(s). No other patient taking this drug has shown any of Ashley’s symptoms, other that ‘some’ moderate joint stiffness.

The only connection to the trial drug as being the cause is timeline. She was feeling fine before starting the drug, now she is not, with no other possible causes being seen. As her cancer doctor said last night, we may never truly know what caused these symptoms - it may be the drug, or it possibly, something else that slid in under the radar.

Ashley has agreed to have a small section of rib removed for biopsy. While discouraged, she remains positive, and in good spirits. Please continue to pray for the Lord to guide the doctors in treating her for the pain, and fluid retention, which is basically under control, but only by meds. And of course, for determining the underlying cause, and how to treat.

Lenwood and Kathy

Psalms 40:1-2 - I waited patiently for the LORD; and he inclined unto me, and heard my cry. He brought me up also out of an horrible pit, out of the miry clay, and set my feet upon a rock, and established my goings.