Today is Sunday, April 21st, 2013. This is a day I will never forget. This is the day my daughter Hazel (or Hazelnut, as we all like to call her) has been diagnosed with a neuroblastoma tumor in her abdomen. I am setting up this blog to keep all of our family, friends, and partners in prayer up to date on any and all information I can provide. As I sit here broken, I think of all of you who are just as scared & confused as I am. So I want to be able to provide answers to you as quickly as I can so we can all continue to hope and pray for our darling little girl. For anyone who does not know how we have come to Children's Hospital Los Angeles to discover this devastating news, allow me to bring you up to speed:
This all started Wednesday morning when Hazel was playing with me and her sister in the living room. Out of the blue, she began crying in pain, telling me that she had "Owies". When I would ask her to show me where it hurt, she could not really describe it. One moment she would say her belly, then her diaper, then her back. Many times she would just say, "I don't know". This lasted throughout most of the afternoon, with breaks of normalcy between cries. I thought maybe she had trapped gas, or was getting that nasty stomach flu that was going around. She had no other symptoms, so I decided to just keep a watchful eye, and see if there were any changes. That evening, it seemed to go away. She cried a few times in the middle of the night, but that is not so unusual for a 2-year-old. The next day, Thursday, she continued to complain of "Owies", but did not seem to cry as much. She also appeared a little more tired and lethargic, but I assumed it was because she did not sleep well the night before. I did notice a change, however, in her eating behavior. She is normally quite a ravenous child, and she only finished half of her breakfast, barely touched her lunch, and flat out refused her dinner. She would not even accept treats, except for two little M&M's. After dinner, she fell asleep on the couch and spiked a fever. That's when I knew something was wrong. I even remember saying to Aaron, "My Mommy instincts are going crazy...". Looking back, I truly believe God was moving within me, to get us to where we needed to go. We decided to let her sleep and see how she was in the morning. When she woke up, she still had a fever, did not want to eat anything and was extremely lethargic. I gave her some Tylenol, and the instant it went down, it came right back up. That is when I called the Pediatrician.
Once in the Dr.'s office, the Pediatrician agreed with my assessment, that this was not a normal flu or sickness. As Hazel lied there so lethargically, the Dr. observed terrible dehydration, an increased heart rate, and a tender and enlarged abdomen. She believed it may have been something with the appendix and/or liver and wanted us to go over to the ER right away. At the ER in Simi Valley, Hazel received IV fluids, and they did blood work and an Ultrasound. When the radiologist and nurse-practionioner discussed the results, they informed us that there was a solid mass, the size of a lime, growing inside her abdomen, but could not tell us anything else about it. They called Children's Hospital, reserved our space and prepared us for transport. With all of the waiting, we were there for about 4 hours.
At this point, Hazel's fever was finally down and was much more hydrated, so the ambulance ride was great! She was constantly singing songs, waving to Daddy (who was following behind us in the car), and talking to the EMT's, who she referred to as Doctors :) Once in the ER at Children's Hospital, it was another waiting game. We arrived sometime around 7pm, which is when we met several nurses and doctors. They told us they were going to review the scans to determine if they agree with the results or if they should run their own Ultrasound as well. More blood was drawn, and more IV fluids were given. Hours later, the Doctors came in to inform us that they agreed with the results: There is a mass inside her abdomen and there are two things they are most concerned about; a Wilm's tumor, or a neuroblastoma. They said we would be admitted upstairs to the oncology unit for more tests, specifically a CT scan. This was almost 1:00 in the morning.
Saturday we saw many more hours of waiting until we finally got to take Hazel for her CT scan around lunch time. She actually enjoyed, what we called, this ride in a tunnel. She even fell asleep for part of it. When the scan was over, we were told we would hear back from the doctor by the evening. We spent the next few hours enjoying our little girl, getting support from family and friends, and watching Hazel sleep peacefully. Then, sometime in the late afternoon, Dr. Araz Mararchelian, a neuroblastoma specialist, came to see us to discuss the results of the scan. She told us that the CT was not 100% conclusive, but she was fairly confident that what we were dealing with was a neuroblastoma tumor. She showed us the scans and described to us that the tumor was not a well defined shape, was pushing on the kidney and encroaching around part of the liver, but not invading it. She also had ordered a lab test of Hazel's urine which could determine 100% if this was a neuroblastoma, but we would not get the results until Sunday. She discussed with us all of the possibilities we were facing, which was a very difficult, but informative conversation.
One thing the doctor is concerned about is whether or not the tumor has spread to the bone. So on Monday, Hazel will be getting a bone scan, and will be going under anesthesia to receive a biopsy and a possible bone marrow test (pending results from the bone scan). Today, the results from the urine test came back positive, which has now confirmed the diagnosis of neuroblastoma. After the next few tests, we will know what kind of tumor we are dealing with, what stage it is in and what our treatment plan will look like. As soon as we know anything, I will continue to keep you posted.
Throughout all of this, our little Hazelnut has been such a trooper. She holds very still through the poking, prodding and tears. The nurses always say how great of a job she does. She has charmed the pants off of most everyone who has come to see her. And most importantly she has informed every staff member she has met that she is not Hazel, but Hazelnut!
We want to thank everyone for all the prayer, love and support we have received over the last few trying days and I am sure we will continue to receive throughout the months to come.
We also have faith that our God is a loving, mighty, & powerful God, and He is always by our side through all of this. We believe it was He who guided us to the pediatrician and who stirred within me a feeling that I could not shake. And it will be He who continues to guide us every moment of every day. One verse that kept coming up throughout the day was Isaiah 58:11- "And the Lord will continually guide you, and satisfy your desire in scorched places, and give strength to your bones; and you will be like a watered garden, and like a spring of water whose waters do not fail." As we await the test results for tomorrow, we pray that Hazel can be given strength in her bones and that the tumor has not spread there. If it has, we pray that God can give her his miraculous strength and that the treatment she receives will be what is best for her.
Hopefully my posts from here on out will not be as verbose, but I wanted to make sure that everyone had all the updated information! So until tomorrow, goodnight, and GOD BLESS YOU ALL!