Sunday, April 21, 2013

The Hardest Thing I Have Ever Written...

     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!

31 comments:

  1. This comment has been removed by the author.

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    1. Hi Jacquelyn,

      There is also a free online service called "Them Them a Meal." It's really easy to use and set up. If you are interested in using it instead and need help with set up, please let me know, because I used it in the past with another friend's family and it was very helpful. The URL is: http://www.takethemameal.com/. I will look at the schedule and sign up for a meal, too.

      --Maggie

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    2. ~~~~UPDATED~~~~
      Good morning! Dear family members & friends, if you would like to bring a meal to the hospital you can sign up and check out what days aren't covered on this shared calendar. (moved off of google because this one is easier to register on)

      www.takethemameal.com
      You search by last name & password. For security I'm leaving the last name off this blog but the password is 4293

      OR, you can email or text and I will coordinate for you and let you know when you can help. JacqueWatkins@me.com or via cell at 9492120268

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  2. This comment has been removed by the author.

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    1. I am a 40-year-old. My Hepatitis B (HBV) disease appeared at the age of 34, with no hope of a cure from the hospital i looked further for an alternative treatments, a friend of mine told me about Health Herbal Clinic in Nigeria who sell herbal treatments for diseases including Hepatitis B disease, I contacted the herbal clinic via their website and purchased the HBV herbal remedy. I received the herbal remedy through DHL couriers within 8 days and i immediately commenced usage as prescribed, i used the herbal remedy for about a month and 1 week, my condition has greatly improved, all my symptoms including Abdominal pain, Nausea and vomiting, Loss of appetite, I am HBV free! contact Health Herbal Clinic via their email draribaspelltemple@gmail.com or visit https://m.facebook.com/greatdrariba.. PLS HBV is not a death sentence, there is a cure!
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  3. Lauren,

    My utmost prayers, thoughts, and heart are with you and your dear family. May god give you all the strength and blessings to get through this test with ease. May this also be a small bump in Hazlenut's long and beautiful road ahead :) Positive thoughts, energies and vibes coming your way from San Francisco :)

    Warmly,
    Leena Barakat

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    1. My sweet Leena... Always showing up for POSITIVITY, like the earth angel u are!:)
      Julie miller

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  4. Can we send Hazelnut cards. My granddaughter Lenzie is a survivor of Neuroblastoma and has OMS and we just lost ny nephew to a rare disease called dyskeratosis after he had a bone marrow transplant last January and I know cards can sure bring a smile to a child who is going through so much. Prayers for Hazelnut... I live in Crestview, Florida and would like to send her a card if I could get an address. my email is: sj1958@cox.net

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  5. Beautifully said lenna. Lauren my thoughts and prayers are with you and your family. Im so glad hazelnut is being such an amazing big girl! let me know if there is anything I can do. you are an amazing woman and your family is proof of that! My love, thoughts, prayers and support are with you and your wonderful family.

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  6. Your Sweet Hazelnut's card went out in the mail today and do hope it brings her a smile... Thanks for repling. Sending Hazelnut ((((HUGS)))) Love, From Sue in Florida...

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  7. Lauren, we are praying for you and your sweet family especially Hazel. She will be in our prayers every night and we will be sure to check in with Laura to see what your needs are. Tons of hugs to you Lauren.
    Love, Stacy Thompson and family

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  8. We (and all your church family) are praying for Hazel and your family.
    Love, Petrea McWilliams and family

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  9. Dear Hazelnut,
    Your Grandma Bev sends beautiful Xmas cards, year after year. I am so fortunate to see you,your brother and sister grow. You are in my prayers!!!

    Love,
    Michelle Kahle

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  10. I hope Hazelnut liked the money I folded into hearts ♥ for her in the card. They were from my heart ♥ to her heart ♥. Prayers for Hazelnut and all of you!!! Thinking of all of you...
    _________/)______./¯"""/')
    ¯¯¯¯¯¯¯¯¯¯\)¯¯¯¯¯'\_„„„„\)
    A Rose for you if it turns out right on here...

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    1. Meant to sign from Sue in Florida...

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  11. You have such a beautiful daughter. My goodness that has got to be the most difficult thing you can go through. I don't have kids but do have a cat and am not looking forward to the inevitable. I can't imagine what it must be like to have your child so young with such a problem. I don't know what to say just I will be hoping for you guys and sending positive thoughts your way.

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  12. I saw beautiful Hazelnut's story and I was deeply touched at her strength. Your family will be in my prayers.
    I wish to send a gift to her and your family, if you could give me an address where I can mail it to.
    Thank you and God be with you.

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  13. I found your blog about from the pizza story and have just started reading it. Your first post was so familiar to me. On April 25, 1988 my 2 year old daughter was diagnosed with a stage IV Wilms' Tumor (both kidneys were affected). I remember the waiting to find out which it was...the Wilms' Tumor or neuroblastoma. She underwent several surgeries including removal of the tumor, her right kidney, and 10% of her left, 15 months of chemotherapy and 8 radiation treatments. It was a scary time! I'm happy to be able to say that she will celebrate her 28th birthday this Saturday. If you haven't already...find a good support system with other parents who are going through or have gone through what you are. Candlelighters was a wonderful support for our family. My thoughts and prayers are with you and your family and your little Hazelnut.

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  14. I just read about the pizza story and started reading from the beginning.
    Don't give up hope!
    Your little girl is young and will have long life in front of her. Because she is strong, she wants to live!
    She looks so happy on the pictures even with all the things she had to go through the last couple of months!

    I wish you all the best!!!

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  15. I must say I am so touched by this story and I wish Hazel a quick and speedy recovery. And as for your family, God will surely give you all the strength you need especially at this time.

    In the end, it shall be well and all this would be history.
    Stay blessed and strong!

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  16. To be very frank I cried reading this first blog . I don't know how to say this but I salute to you as a parent being completely broken inside yet keeping everyone update . As far as strength is concerned I would say that YOU ARE THE BEST PARENTS IN THE WORLD . I don't have words to express what actually I am feeling right now . Just few words for the little princess - GOD BLESS YOU DARLING !! I WISH I COULD BE AS STRONG AS YOU ARE FACING ALL THE PAIN . YOU'LL BE MY IDLE FROM NOW ON..... !!!!

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  17. I just started reading the pizza story as well and I am really touched. I wish Hazelnut a quick and speedy recovery..I pray for restoration and divine healing..Your story has really touched me and all I can do is pray ..You and your husband are the best parents in the world and your children are blessed to have you.Keep on keeping on you are stars...and Hazelnut get well soon dear..you are a very adorable little girl resilient and blessed...I am writing from Zimbabwe in Southern Africa...

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  18. My child was diagnosed with neuroblastoma and some complicated nerve tissue infections Luckily we hadan encounter with Dr Jose, a renowned Italian doctor that helped him overcome this cancer and other infections in less than two and a half months, just with the use of herbal medicine and spiritual help, i can now boldly say He is cancer free and a proud living testimony,Dr Jose is known to be able to tackle any type of cancer found in the human body, God forbids any one should suffer here on earth, thats why I believe he created all these herbs, if you also want to clear your doubts and fight cancer to the barest minimum, take the bull by the horn and avoid death, you can contact our Doctor, by his email joseherbals28@gmail.com

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  19. My child was diagnosed with neuroblastoma and some complicated nerve tissue infections Luckily we hadan encounter with Dr Jose, a renowned Italian doctor that helped him overcome this cancer and other infections in less than two and a half months, just with the use of herbal medicine and spiritual help, i can now boldly say He is cancer free and a proud living testimony,Dr Jose is known to be able to tackle any type of cancer found in the human body, God forbids any one should suffer here on earth, thats why I believe he created all these herbs, if you also want to clear your doubts and fight cancer to the barest minimum, take the bull by the horn and avoid death, you can contact our Doctor, by his email joseherbals28@gmail.com

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  20. i was in a trauma, having to deal with brain cancer and tumours, I kept on having seizures and i thought I would lose my sanity and my life, my brother got the contact of a powerful herbal doctor, whose herbal medicine cured my brain cancer, now i am cancer free! He is a genius in dealing with cancer and all brain related issues, you also can contact him on joseherbals28@gmail.com

    ReplyDelete