Wednesday, November 25, 2009

High-Risk Disease

Recovery from the surgery has been a bit rougher than I anticipated, but I don't think Jordan has experienced anything out of the norm. It seems like within the first 24 hours we were concerned about each of the vital signs at some point...although now most of the issues have resolved. The one lagging concern, Jordan's respiratory system, seems to be returning to normal as well. Tonight I could see signs of Jordan returning back to form...she was grabbing anything she could get her hands on and stuffing it in her mouth, including the kleenex box/kleenex...Craig pointed out that if I hadn't eaten in three days I might want to eat kleenex as well.

We received the results of one of the pathology tests today and did not get the news we were hoping for. Jordan’s tumor has MYCN amplification which means she has the most aggressive form of neuroblastoma, classified as high-risk disease. In addition to surgery and chemotherapy, Jordan will likely need a stem cell transplant as well as other experimental therapies. Our current cancer center cannot provide all the necessary treatments for high-risk disease so we will need to set up additional care for Jordan at one of the main neuroblastoma centers in the country, either Memorial Sloan-Kettering in NYC or CHOP in Philadelphia. Memorial Sloan-Kettering specializes in an immunotherapy while CHOP offers a high-dose radiation therapy.

Ideally, we would like to meet with both Sloan-Kettering and CHOP prior to selecting the treatment protocol, but the holiday and a national oncology conference are interferring with our timing. Our plan now is to meet with Sloan-Kettering on Friday, make a decision about which treatment to pursue, and begin chemotherapy on Saturday. It seems like everything is moving very quickly, but it is imperative that we begin treatment as soon as Jordan’s body is recovered from the surgery. We are very disappointed that Jordan has high-risk disease, but are trying to focus on the fact that her cancer can still be just means she will have a longer road. Please keep praying for our sweet baby girl and also for Craig and I as we have to make some important decisions in the next few days.


Erin said...

Lots of prayers from Texas...hope you have a wonderful holiday! We are so thankful that we have a Father that hears our prayers and meets our needs - may He grant you wisdom and comfort in these decisions. Hugs and kisses from us to baby Jordan!

Liz said...

I was hoping for a different staging for Jordan, but I am glad to hear that you have a strong and quick action plan and I ask God that He will guide you in your decisions. I am grateful that Jordan has excellent doctors, the best treatment facilities in the country nearby, fervent prayers on her behalf by so many people, and God above who watches over. May God fill your hearts with hope and faith now and always as you begin this journey with Jordan. And know that you have support and love from everyone around you. There are so many people praying for Jordan, you, and Craig. Bless you all on this Thanksgiving Day and always.

Michelle said...

I hope Friday went as well as possible. I pray that Jordan's chemo will kick that ugly cancer in the butt. My family and I continue to lift yall up daily.