Monday, April 1, 2013


Mia had her Bone Marrow biopsy and aspiration.  She always does so well with that stuff.  She is really a great patient.  The procedure was done in the PICU at St. Luke's.  She saw several of her favorite doctors and nurses.  They are all so nice up there and make her feel so special.

We had planned to do the lymph node biopsy surgery the following week (last week) but the surgeon was heading out of town the following day and didn't want to leave Mia in post-op while she was away, so the surgery was put off till this week.  In the meantime she went in for an IVIG infusion the day after her bone marrow procedure.   While we waited for the infusion, her doctor called me in.  The results of her PET scan were back. It indicated lots of activity in her spleen.  The doctor didn't want to call it a relapse until we received confirmation either from the bone marrow or the lymph node biopsy.  In the meantime another appointment was scheduled for the following week which was last week.
At our appointment last week, her counts were even lower.  Her platelets were at 6, nuetriphils at 320 and hemoglobin about the same, below 10.  And we had the results from the bone marrow.  Good news is that she doesn't have to have the lymph node biopsy, bad news is, she doesn't have to because the cancer now shows up in her bone marrow.  She has relapsed.  The doctor wanted to start her on a new round of chemotherapy that same day, but I insisted that first he send the information to the doctors in Seattle to see if they have any ideas on treatment and how to proceed.

Everything we have been reading about this cancer AITL (angioimunnoblastic t-cell lymphoma) when it relapses is fairly grim.  I am learning that the hope is that each treatment will prolong life a little so that hopefully new treatments and eventually cures can be found.

She will be having a lumbar puncture on Wednesday.  They want to make sure the cancer hasn't reached her spinal fluid.  I would assume that would be very bad.  All along we have never received any kind of prognosis or staging of this cancer.  It is simply to rare.  Unless something comes back from Seattle that suggests another treatment course we will be starting treatment on Wednesday.  She will receive six round of treatment every three weeks.  Each treatment consists of a half hour IV injections three days in a row.  IF she shows a good response to this treatment we will probably doing a donor bone marrow/stem cell transplant at the end of it.

Every time I think about what is happening  I get a rock in my stomach, a lump in my throat and tears in my eyes.  I feel pretty helpless.  Yesterday I spoke in church about the Resurrection.  Talk about a tough subject for me right now.  I believe that Christ was resurrected on the third day.  I know that we will all be resurrected.  I know that if I continue to put my trust in Him and place my troubles and concerns and His feet that He will help me through whatever may come.