Saturday, April 19, 2014

One Year Later...

** NO RESULTS FROM HER TESTS YET!  MAYBE MONDAY OR TUESDAY**     
     Today, April 19th, marks exactly one year since we discovered the tumor growing inside our little Hazelnut's body.  Hazel and I spent this morning last year in a pediatrician's office, desperate for answers.  Hazel had been complaining of pain, had not been eating or drinking for several days, had spiked a relentless fever, had vomited and was falling asleep every few minutes.  God kept moving in me to trust my "Mommy Instincts" and not allow this matter to rest.  I remember, with tear-filled eyes, expressing to the doctor that I thought this may be cancer.  To this day, I don't know why that thought even entered my mind, given our complete lack of experience in the world of cancer; but in my heart of hearts, that was my deepest fear for my little girl who had just turned two years old.
A few weeks before diagnosis
     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.  I tried calling Aaron about 15 times to tell him what was going on, but it wasn't until we were admitted that he got my messages and rushed from work to meet us.  I was absolutely terrified.  Once in the ER in Simi Valley, Hazel received IV fluids, and they did blood work and an Ultrasound of her abdomen.  
Laying on the gurney in the ER
She was so tired...

     When the radiologist and physician's assistant discussed the results, they informed us that there was a solid mass, the size of a lime (we found out later that it was in fact much, much bigger than a lime) growing inside her abdomen, but could not tell us anything else about it.  Aaron and I were extremely overwhelmed and begged God for the tumor to be benign.  I remember my body went into shock and everything became such a blur.  Then they called Children's Hospital, reserved our space and prepared us for transport.  We waited on that gurney for about four agonizing hours.  At this point, Hazel's fever was finally down and was much more hydrated, so the ambulance ride was actually 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 :)  Leave it to a two-year-old precious little girl to take away the mental torment.  
     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.  Our family all traveled down to the hospital to be by our side, cry with and support us.  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.  It took several scans, tests, and a biopsy for it to be confirmed that Hazel was diagnosed with Stage 3, High-Risk Neuroblastoma.   
     At the time, having this all happen over the course of a single day seemed tremendously unfair.  However, in hindsight and with a year of experience under my belt, I realize we were unbelievably blessed by our Father to have it happen in this way.  Most families struggle for weeks or months to find a diagnosis, and by the time the Neuroblastoma is discovered, it has already spread throughout the body and is diagnosed at Stage 4.  I wholeheartedly believe that because God lead me to find answers, we were able to find her cancer soon enough that it did not spread and we could receive a Stage 3 diagnosis.  Had we waited even just a week more, it could have been a very different story.  I now know the kind of aggressive beast that Neuroblastoma is, so I am tremendously thankful we caught it when we did.  
This one verse kept coming up in those first few days, so I wrote it on the white board in Hazel's hospital room, and we were all clinging to it as we awaited the test results that would determine if her cancer had spread to her bone and bone marrow.  
     In the weeks following, we found out more than we would have ever wanted to about the world of childhood cancer and specifically about the monster we have to come to know as Neuroblastoma.  Hazel braved each test, treatment and hospital stay with a courage beyond belief.  We feared for our daughter's life and for the pain and suffering she would have to endure; but she remained a child, adapting to her surroundings, and finding to joy in every day.  We have relied on the support of our family and friends, more than we would have ever imagined would be possible and without them, this year would have made it far too difficult for our little family to survive each day.  I don't think I can ever express fully the depth of our gratitude.  We have lost many friends along this journey, but we have gained many more new friends (other cancer families, the amazing nurses and doctors at CHLA and many supporters) who are now a part of our extended family, and I could never imagine our life without them.  If my calculations are correct, Hazel and I (with a few days of relief for me given by Aaron & other family members) spent 200 out of the last 365 days away from our family.  We have adjusted to a new home in the hospital, and a new reality that we pray and we pray and we pray we do not ever have to face again!  So please continue to keep our little Hazelnut in your prayers and that God will rid her body of this deadly disease.  We hope for a year of change ahead and one where we can have some time to breathe.

These are a few photos from those first 12 days back in April of last year:




12 comments:

  1. I have been following Hazels blogs for awhile and will continue to pray for a full recovery for your beautiful little girl..

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    1. I prayed for Hazel last night!

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  2. Such an amazing journey. Through good and bad, your family have prevailed. You have brought hope, smiles, and love to others. My family sends our love, comfort, prayers and well wishes now and for the rest of your lives. Us Simi Valley people have to stick together. Much love, The Akridge's

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  3. Wow. What a journey! I continue to pray every day for Sweet Hazelnut's health and healing and your family.

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  4. Hazel fight has led me to become a regular platelet donor at Childrens Hospital. Knowing that I can be of help gives me a special feeling of self worth. Along with my platelets go my prayers that these children will recover.
    God bless Hazel and her family. I believe that God has big plans for Hazel,

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  5. God's Timing is always perfect! Still praying for Hazelnut and you all! Thanking God for His Goodness and Mercy!

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  6. Continuing to pray for Hazel and your entire family. She is definitely a miracle and I thank God for bringing her this far. I pray you continue to feel His presence blessing you with patience, peace, comfort, strength, and healing.

    Janet
    COLE's Prayer Team

    **Hazel is such a beautiful little girl even when she was feeling rotten last year. :)

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  7. Loving thoughts from france for your little fruit of life

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  8. I prayed for Hazel last night.

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  9. Jasmina from SwedenApril 21, 2014 at 10:51 PM

    Little baby girl Hazel, you are so loved by many, I have never met you but I pray for you every day...
    fight little Hazel, fight as hard as you can, you will win over this monster!

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  10. Prayers from north MS! My daughter has a blood platlet disorder (ITP) & has been a regular St. Jude patient over the last year. The first night we were admitted to St Jude & had no clue what they were going to find was the scariest moment of my life. Thankfully, my little one only had a blood disorder, but we have gotten a close-up view of the childhood cancer world in our time at St Jude... Hazel, you, & your family are so strong & brave! I continue to pray for her daily.

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