Friday, 6/13/14: This is Susan's update for today:
Amy's oncology team came by after her transfusion this afternoon to go over the results of this morning's MRI. I knew it was probably not a simple good report when our team psychologist was with them. It's actually a long story that begins a couple of weeks ago with the pathology report following Amy's surgery. There are still more questions than answers, but here is what we know.
Amy's tumor, when completely resected, was reclassified as a cancer called Pleuropulminary Blastoma (PPB). This type of cancer is exceedingly rare with only 300 cases worldwide ever diagnosed. Her original diagnosis was not a misdiagnosis and still stands as well. Her doctor explains it as the PPB 'transitioned' into a Anaplastic Embryonal Rhabdomyosarcoma tumor. The pathology is the same at a cellular level but when the whole tumor was examined it was found to be PPB. Confusing, I know. This reclassification did not change her chemo protocol. Last week we had her tumor sent to Minnesota Children's Hospital which is home to the international experts on PPB, for a second opinion concerning treatment and to confirm the diagnosis. We were waiting for this confirmation before we told Amy and all of you.
This brings us to today... PPB frequently spreads to the brain. 'Regular' Rhabdomyosarcoma rarely does. When the possibility of PPB arose a couple of weeks ago I immediately asked for an MRI to check her brain. She had not had one yet so we have nothing to compare today's MRI to. This afternoon we found out that Amy has three "spots" on her brain. There are a lot of uncertainties still about the significance of this finding. Are the spots cancer or something else (ie a side effect of chemo)? If the spots are malignant are they active or dead? If they are cancer did they spread before treatment or during? Once these questions are answered we will know more what this finding means. We know the spots are not in a place that puts her in any immediate danger. They are not causing her any problems functioning or pain - both of which are encouraging signs. Amy's oncologists are very encouraged by how well she is doing overall especially in light of this new finding. She is very strong physically and continues to gain weight and be much more active than they would expect - again encouraging signs in light of today's findings. Amy's team will conference with the neurosurgeons about what the best plan will be over the next couple of days.
We made the decision to tell Amy about the 'spots' and she is understandingly confused and angry (angry she said that she might have more cancer). Overall she is handling the news remarkably well. Please pray for peace and wisdom as we go down this new road. Please pray for wisdom as her doctors make a plan for treatment. Please pray that Amy can take part in the last week of school next week. She will be so disappointed if she has to miss it. Today she said she just wants to be a normal kid again and normal kids don't have to miss the last day of school.
We are thankful to be going through this at the #1 rated Pediatric Cancer Hospital in the country (per US News &World Report this week - thank you God for this timely confirmation that we are getting the best possible medical care for our little girl!). God is faithful and we trust Him to lead us through this time of uncertainty.
For more information on PPB visit www.ppbregistry.org
Thank you for your continued prayers and support!