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Hazelnut...

Written by: Bill Sparks Posted on: January 27, 2014 Tagged: Hazel Blog: Warriors

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Hazel came to Gilead as a result of a friend of Tina Cook (Gilead Ministries Administrative Assistant).  Her story had made national news after she and her mother posted a sign on their hospital window asking for someone to send some pizza to their room.

Their story made it to People.com (People Magazine).  You can read it here

(http://www.people.com/people/article/0,,20717438,00.html)

Shortly after we sent Hazel of one of our handmade teddy bears.  Our teddy bears are made by our volunteer Margaret. (see end of blog for Margaret's most recent endeavor) 

Hazel and her family receive encouragement, cards and ongoing gifts from Gilead Ministries and many others who have poured out support for this little girl...


Here is Hazel's Story 


Our Little Hazenut's Journey to her Stage 3, High-Risk Neuroblastoma Diagnosis

This all started on April 17th, 2013. It was a 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. Azarz Marachelian, 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.

Sunday, the results from the urine test came back positive, which then confirmed the diagnosis of neuroblastoma. One thing the doctor was concerned about is whether or not the tumor has spread to the bone. So on the following Monday, Hazel received a bone scan, and went under anesthesia to receive a biopsy and a bone marrow test. We were so blessed to find out that both the bone tests were negative! After a week full of many other scans and tests we were so blessed to find out that her cancer did not spread anywhere! This is what gave her a Stage 3 diagnosis. This news was so relieving because about 75% of all cases diagnosed are Stage 4 (or have spread throughout the body). She is still considered a high-risk case because of the nature and size of her specific tumor and her age, but we are extremely hopeful that she will beat this thing!


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 givestrength to your bones; and you will be like a watered garden, and like a spring of water whose waters do not fail."

Here is the latest from Hazel's family...

Hazel Update

I want to apologize for the lack of updates. I know there are so many of you who have been praying for our family and would like to know how we have been doing, and for that I am so thankful. I will assure you that the missing updates are NOT because our little Hazelnut has been unwell, but because of the exact opposite reason! 

She has been feeling better than she has ever felt since last April and has been busy being a normal little girl and growing hair! The best part is that our little Hazelnut finished her last day of radiation on the 10th, so we have had FULL days at home! Here is what a typical day at radiation look like:

  • Hazel and I would wake up while it was still dark outside and drive to Children's Hospital every weekday to check in for radiation at 7:00 AM
  • While we waited for our appointment, a nurse would help me get her changed into a hospital gown, take her vital signs, connect her heart/respiratory monitors, attach her pulse oximeter and blood pressure cuff, and get her line ready for her sedation medication.
  • Once ready, we would head into the radiation check-in room. On the computer screen was a picture of her face and a picture of her scans. Each morning she would say "Those are my bones!" and the nurse would ask "Who is that cute little girl right there?" and Hazel would say, "That's Hazelnut!"

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If you would like to read more about the artist who makes our teddy bears, you can see a recent newspaper article here:

http://www.chronicle-tribune.com/news/local-painter-to-be-featured-at-open-house/article_88859588-7f33-11e3-ae07-001a4bcf887a.html

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