We are nearing a crossroads in Addie's treatment... I have asked a few more questions this round which has brought a lot more fear and worry!! This is why I have avoided any knowledge thus far! For me, ignorance has been bliss!! With knowledge about Neuroblastoma brings a LOT of fear. It is an awful cancer that brings more death than life, at least in the stage and markers that Addie has! I believe for her to survive it will be a miracle! That is why through all of this we have to trust and have faith!! It is His will for her, I just pray that His will is for her to live!
There are a lot of things coming up for our little sweetie pie! We have her MRI scheduled for the 26th, this MRI is solely for surgery. It will show our surgeon what he is up against, which is hopefully a very small and easily removed, dead tumor! We meet with one of our oncologists and our surgeon the following day, the 27th, and her surgery will be scheduled. The surgery will likely be the first week of September! I don't have any details of what this surgery will bring yet. Following her surgery, she has her last scheduled round of chemotherapy. However, the end of chemotherapy is nowhere near the end of treatment for Addie, it is merely just the beginning! After round 6, Addie will have a full work up, all new scans and another bone marrow biopsy! The scan specific to Neuroblastoma, the MIBG scan, has to be 95% clear in order for us to proceed to her stem cell transplant! I questioned our oncologist what the biggest concern for Addie was and she said it was the disease present in her bone, mainly her vertebrae! This will be the hardest area to penetrate and to kill! If the scans show that substantial disease remains then we will have to go to New York for radiation. We want to go straight into her stem cell transplant, that is the best case scenario... Please pray for this!!! Please pray that her bone lesions have been killed!! The stem cell transplant is intense but it is also us moving forward and in the right direction for her treatment! We will be in the hospital for a minimum of 30 days for her stem cell transplant, much more information about this lies in our future!!
I also questioned our oncologist if she had seen children survive what Addie has. She said it is very hard and they don't use the cure word until you are 8 years post treatment, but she has one child who had the same presentation that Addie has who is 6 years out! She said you would never know anything had ever happened to him! Here are a few statistics...They typically only see 2-3 cases per year of Neuroblastoma at the University and it is all varying stages! Currently, they are only treating 2 active cases of Neuroblastoma and Addie is one of them! There are roughly only 500 new diagnoses/year of Neuroblastoma in the United States. So to have one survivor that was stage 4 and n-myc is actually hopeful, not discouraging!
Our biggest struggle is n-myc... It is an awful mutation that makes her cancer cells far more resistant than normal Neuroblastoma cells!! Praise God that up to this point Addie has responded to treatment!! With all the knowledge I have received I just see more and more that Addie's life lies with God... It is His will for her, her life is not in our control!! As scary as that is I have to continue to reassure myself to trust in His will for her!!
I have a lot of prayer requests, as I always do...
-Please pray that she has minimal sickness and weight loss following this round. Also pray that she doesn't get a fever and we can be home as long as possible. Pray that her chemotherapy this round will not bring kidney damage or hearing loss!
-Please pray that the disease in her bone is being killed and that all of her cancer cells contiue to respond to therapy. Pray that her scans show the disease is gone!!! Pray that all cells are active, not resistant to therapy and are being killed!
-Please pray that her body continues to stay strong and unharmed by the treatment!
-Please pray that our family continues to weather this storm together!! Pray for faithful attitudes and let us not be broken down by fear and worry!
-Please pray that my baby will someday be free from this and allowed to live a "normal" and healthy life!!
-Please pray that she is HEALED!
On a very positive and very thankful note... Her kidney function test and hearing test went very well!! Both were PERFECT! Praise Jesus for that!! Praise God for how amazing her treatment has been and for how well her cancer has been responding!! Praise Him for all the love and support we have received and for the comfort He gives us every day!!
