Tuesday, June 22, 2010

Back At It

Jordan was admitted to Morristown Thursday for a four day course of chemotherapy. This cycle contained Cytoxan, topotecan, and vincristine. Some of these drugs she has had before, one was new. On Thursday Jordan did fantastic...eating and playing well, no vomiting....I started to wonder if the pharmacy had sent the correct drugs. By Friday afternoon the effects of chemotherapy began to hit Jordan and she had some vomiting and loss of appetite. On Saturday Jordan's red blood cell count had dropped low enough that she requried a blood transfusion.

Saturday night Jordan spiked a fever of 101. At this point we were all looking forward to going home the next day, but I was worried the fever would mean we would have to stay in the hospital for monitoring after the chemotherapy was completed. Fortunately, Jordan's white blood cells were not too low and she looked relatively healthy so we were able to leave after a dose of IV antibiotics.

Pop Pop was with us for most of this hospitalization and we were very thankful for his help! Pop Pop got Jordan a life-sized Dora the Explorer balloon...which was a lot of fun until Jordan started to try some wrestling moves on Dora. We were also forutnate to have visits from my friend Joyce and Aunt Suzette...and we waved to Mom Mom, Molly, anad Brandi out the window as they were recovering from infections and too young to visit.

While we were in the hospital we were very excited and relieved to learn Jordan's bone marrow biopsies came back clear. This means the two spots in her skull are the only two places where the neuroblastoma appears to be active. We are hopeful this means Jordan's relapse is more an undertreatment issue rather than spread of disease. We also learned that Jordan's course of radiation will likely occur after the second round of high-dose chemotherapy.

Most days I feel a bit in a daze and Jordan's relapse doesn't seem like reality. I keep thinking to myself that I can't believe we are back here so soon...back to the frequent hospitalizations, the watching for fever, the long transfusions, the daily shots... I am sad that the swimming lessons, play dates, and trips to the shore that we had planned for Jordan will have to be put on hold. But I am extrememely grateful that Jordan is doing okay and that the relapse and chemotherapy have not dampened her spunk or determination.

Wednesday, June 16, 2010


Jordan had her first set of follow-up scans this week. We were very disappointed to learn Jordan has relapsed. The MIBG and MRI scans show two spots on her skull. It appears they are the same spots she had on her skull at diagnosis. This could be good, indicating the cancer has not spread to new areas. We will not get the results of the bone marrow biopsy until later this week; we are praying that the bone marrow is clear.

Our plan is to start high-dose chemotherapy tomorrow at Morristown. Jordan will be an inpatient for four days to get the three medications for this regimen. We will do two courses of this regimen followed by three to five courses of a lower dose regimen. Fortunately, the lower-dose chemotherapy will be done on an outpatient basis. Jordan will also have a course of radiation to her skull at MSKCC, likely between the first and second rounds of chemotherapy. Dr. Kushner advised MSKCC has a lot of experience radiating the skull without negatively impacting the brain.

The relapse rate with neuroblastoma is so high that we can't say we are completely surprised Jordan relapsed, we just did not expect it to be so soon. We are heartbroken that our sweet baby is re-entering the world of active treatment. Dr. Kushner seems very optimistic that we will be able to get Jordan back to remission quickly. He also said Jordan looks great and her counts are good, both positive signs. We are praying that in five years we look back and can say that as far as relapses go, Jordan's wasn't too bad.