On Wednesday night I received the email from our little Hazelnut's oncologist that we were anxiously waiting for. I was afraid to open it, fearing the worst but hoping for the best. If Hazel's scans were to come back positive, then we would have to begin a journey into the world of Relapsed/Refractory Neuroblastoma, for which there is no known cure. If Hazel's scans were to come back negative (or clear), then our daughter's body will have been off of treatment and still able to remain cancer free! Dr. Tran's email was extremely simple and to the point. All it said was this: Hazelnut's scans are COMPLETELY NEGATIVE! (The words are exact, but I added the all caps and bold face letters for good measure!)
To say that we are elated and relieved is a gross understatement, but honestly there are no words adequate enough to express what Aaron and I are feeling. All I can do is praise our Father in heaven for His faithfulness is continuing to heal our daughter and for giving us each blessed day with her!! Receiving this gift from Him is all that I could have ever hoped for and has given us a small sense of closure now that her voyage through treatment is now complete (she took her very last Accutane pill on Tuesday!!).
With the gift of clear scans has also come another wonderful blessing. While undergoing her bone marrow biopsy and aspirate procedures yesterday afternoon (which we are still waiting on results, but are hopeful they will also be clear), the doctors also removed the central line from Hazel's chest!!! We were told that if her scans came back clear they would do this for us because she has never had disease in her bone marrow and were confident that this would continue to be the case and felt comfortable enough to remove them. The picture above was taken Thursday night, right after flushing her line for the very last time. Flushing her line is something we have done each and every day since April of 2013 and I truly can't believe we don't have to do it anymore! The drawers of medical supplies that I have stored in our bedroom can be packed away. Fear of a life threatening infection developing in her line is now gone. I no longer need an emergency kit in my purse and diaper bag. If she spends the night at a family member's home, I do not have to worry about her line's safety. She never has to experience the excruciating pain of weekly dressing changes. And in two weeks, my baby girl can finally go swimming!!!!!!! My eyes are filling with tears of joy and absolute relief that this tube is no longer a part of my daughter's body, and when I saw it for the first time Hazel said to me, "Do you have happy tears Momma?!" Since I had to be home with the baby, Aaron took Hazel to this momentous procedure. He said that when she awoke after the surgery, she looked down and her eyes also filled with tears, a grin spread across her face and she said "I have no more line! I can splash in the cool!" (this is what she calls a swimming pool). He said it was one of the most precious things he had ever seen. I am sure, in some ways, she will experience a sense of loss because this line has been a part of her for a year and a half, but she recognizes how utterly magnificent it is now that it is gone.
Now I sit here, before all of my children are awake, and I am trying to wrap my mind around the fact that our family is OFFICIALLY done with every last bit of treatment required for neuroblastoma. As happy as I am, I have found myself experiencing some difficult emotions leading up to this moment. We have been winding down to this for some weeks now, and life without constant hospital visits, daily injections and medications, fear of germs causing a life threatening infections and much more has actually been a bit unsettling for me. Strangely, our family has grown accustomed to this crazy lifestyle, and upon this journey's end, we have to readjust. Readjust to a life of normalcy where I have constantly been feeling like I am forgetting something. A life where instead of taking care of one child, I am back as a mother of five children. A life where instead of relying on so many others to help fulfill our daily needs, like cooking dinner, doing laundry and even scooping dog poop, I must fulfill these roles again and begin to delegate and organize our families' needs once again. I found that I have forgotten how to manage so many of these things over this last year and a half, and there is some anxiety related to this readjustment period, so please keep us in your prayers. Another thing I have been feeling is a sense of loss now that we are facing the end of treatment. The friends and family we have gained at Children's Hospital Los Angeles have all made such an impact on our lives and the fact that I will no longer be seeing them on a regular basis is actually very difficult for me. It's like moving away from a favorite neighborhood, or transferring away from a school or job that you love. And although I will not miss the treatment and watching my daughter struggle through it, I will miss walking the halls of the hospital and all of the people we have met in them. Of course we have plans to return for visits and plans to continue to support the oncology program, so thankfully, I do know that these halls are not gone forever.
Thank you all so much for your continued to support throughout this trying time for our family, and I ask that you think of us as we navigate through these next years. I look forward to the future blessings we will be able to share with you, I can't wait for the day we reach 5 years NED and we can finally say Hazel is in remission!
