Complete Remission

Starting last Friday after Jordan's MIBG scan and bone marrow biopsies, we began receiving small pieces of good news. The CT scan was clear...the MIBG scan preliminarily looked good but we needed the final results... Today all the pieces of the puzzle came together and we found out Jordan is in complete remission. The absolute best news that we could have received. I feel joyful and grateful...so thankful to God for this wonderful, fantastic news...so thankful to all our friends and family who have been praying on Jordan's behalf. I also feel humbled. I know that there are parents of children with neuroblastoma who will never get this news and never get to experience this joy. While I celebrate Jordan's health, I am going to keep praying for all those children who are not in remission.


In addition to all the happy emotions, I'm also feeling scared...honestly, more scared than I thought I would be at this point. Jordan starts the next phase of treatment, immunotherapy, on Monday. Jordan will be receiving IV infusions of 3F8, an investigational monoclonal antibody, at MSKCC. 3F8 is investigational because it is not FDA approved, but it is one of the standards of care for neuroblastoma. The idea behind 3F8 is that it will find any residual neuroblastoma disease too small to show up on scans and destroy it to prevent relapse. The main side effect of 3F8 is pain...serious, intense nerve pain that isn't even relieved by morphine or Dilaudid. Patients also have allergic reactions to 3F8...hives and rashes, some even have difficulty breathing. Jordan had the typical issues with chemotherapy....vomiting, diarrhea, fever...but mostly she tolerated it very well. I am really nervous about how Jordan will tolerate this new treatment.


I am also scared about relapse. I know, I know...Jordan's first day in remission and I'm already worried about relapse. It's just that even with the best treatment, the relapse rate is still around 60% and getting into a second remission is much, much harder than getting into the first. Jordan will continue to get scans every three months to closely monitor for relapse. I just hope that relapse is the fear that Craig and I will live with every day but never a reality that Jordan has to face.


So thank you again for all your kind words and thoughts and prayers. They mean so much to us and provide us so much strength. And I ask that you continue to keep Jordan in your prayers as she moves into the next phase of treatment.