Wednesday, April 24, 2013

A Diagnosis

TWO BIG PRAISES TODAY!!!
-Thank you all for praying specifically for Hazel's fever.  The very next morning her fever broke and has not returned!!!!!!!!!  Praise be to God!
-We received the results from the bone marrow biopsy: NEGATIVE!!!!!!  It, so far, has not spread to the bone marrow!!!!!!  The doctor told us that when we have the MIBG scan on Friday, these results can give us some hope that nothing will show up on her bones!  Please pray that the scan can confirm!

    We absolutely needed this news today because yesterday was one of the hardest days of my life.  This was the day we got our full diagnosis.  First let me say, God knew that this moment would be hard for us, and He orchestrated a support system for us to be there: my parents and the pastor of our church Todd Nighswonger.  I could not have gotten through yesterday without their support, so thank you...
     So, the official diagnosis is High-Risk, Stage 3 Neuroblastoma.  It will take at least 18 months of treatment, plus surgery.  It breaks my heart even typing it now.  But from what the doctors told me, most cases they see here are almost always either Stage 3 or Stage 4, because this STINKY tumor doesn't show symptoms right away.  We can take encouragement in the fact that they do deal with these all of the time, so they know what they are doing.  And this specific type of cancer generally responds to treatment very well.  They also told us several things about the tumor itself.  First, it appears so far that the tumor has not spread to the surrounding organs, but is just pushing up against everything; which explains why Hazel is uncomfortable and has very little appetite.  But we won't know about spread for sure until after the scan on Friday, so continue to pray for that scan specifically!
    The doctors began to take us through our treatment schedule and began to explain how our life will look for the next 18 months.  Essentially, the treatment will be broken down into 3 phases: 1) Induction 2)Consolidation and 3)Immunotherapy.  Each stage will last about six months.  In the induction phase, Hazel will receive 3 different types of Chemotherapy; A, B & C.  Each round of Chemo will be given to her over the course of several days, and 3 weeks later (unless her blood levels show she's not ready) will receive the next round.  The schedule will look like this: A, A, B, C, B, C.  Near the end of this phase, she will have surgery to remove the tumor, assuming it has responded well to therapy.  The doctor discussed all facets of this treatment, including tests that will be done, side effects, etc... The next phase, Consolidation, consists of more Chemotherapy and Radiation to attack any lingering cells.  Immunotherapy consists of being injected will her own healthy stem cells, which they will remove from her body during the Induction phase and prepare it for this phase.  The doctor then began to describe the side effects and long-term effects, and this was the moment when I could not take anymore.  I felt sick to my stomach and I remember something one of the residents told me: "This process will move very fast, and if you ever need to take a minute and slow down, just say something".  I mustered up enough strength to ask if this was information we needed to know at this moment, and he said no; so I asked to stop. I stepped into the bathroom, prepared to vomit, but fortunately, I did not.  Aaron was wanting to find out more, so he went to another to continue asking questions.
   Needless to say, this was devastating.  But God was good, because at the very moment I needed her, Hazel began coming out of her morphine trip (she was on a lot after her surgery) and began perking up.  She was smiling and talking, asking for crackers (first time in days!), and wanting to watch a movie. I just soaked this all up.  Aaron came back from talking with the doctor, and gave me some very encouraging information.  He had asked the doctor if there was any way to detect if this was the most aggressive kind of neuroblastoma, and the doctor said that there was, and he does not believe that is what we are dealing with with Hazel!  Also, he said that the cells are more immature, which respond very well to treatment.  Then Aaron asked if there are any statistics about how family life and support affect a child's success.  The doctor said, absolutely.  He believes we have the most ideal situation. He said we are the type of parents who are asking questions, advocating for our child, will be on top of treatments and will be responsible with her care.  In addition, we have such a strong support system, and that will definitely play a large role :)
    Although this day was extremely hard, I was constantly amazed by God showing us His hand in all of this.  Firstly, I am absolutely humbled by the outpouring of support we have received.  I have seen how quickly God has spread the word.  This blog is being read all around the world, and people are praying for her like crazy!  This is amazing!  Also, Aaron and I have looked back on our lives over the last few years and can now see how God has been preparing us for this moment.  He has put people in our lives that have been through what we are going through, and who have already proven to be such invaluable resources and supports.  He has given us some surprise financial assistance before we even knew we were going to need.  For example, we recently looked into buying a new home, but Aaron and I both felt led to re-finance instead.  Had we purchased, I don't now what kind of situation we would be in right now.  When re-financing our house, we were expecting a small amount of money back from escrow, but we ended up getting $5000 dollars!  Lastly, God continues to send information from families all around who's child was diagnosed with this same kind of cancer.  Each family so far have provided us stories of hope and survival, and I truly believe that it is no accident that God keeps covering Aaron and I with these.
    Again, I am so sorry for such a long post, but I know these first days are so full of information; but as time goes on, we will become experts and adapt to our new routine, and the posts will begin to reflect that.  Thank you all so much, from the bottom of our hearts, for being there with us is prayer and support!  We love you!

23 comments:

  1. We've been praying for you guys and can't wait to see you and give you HUGS! You're a strong Mommy and you're doing a great job, Lauren. We love you guys! Hugs and kisses to Hazelnut! We're also looking forward to our turn to help out and watch the other 3 goobers. ;o)
    <3 jolie

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  2. Refreshed the blog several times today waiting for updates. So very glad to see some good news! Praise God; will continue praying for you all.

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    1. Thank you Alex! Aaron is so touched by all of your guys' support!

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  3. Encouraging news! 15 women in my Wednesday evening bible study prayed for Hazel and your family tonight! Many remember you from MPC Lauren! We will continue to pray.

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    1. Thank you Denise! MPC feels like home to me, so please tell everyone thank you and that I think of them often!

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  4. Lauren, I will continue to pray for all of you guys especially precious Hazelnut, a most beautiful gift from God. I will also let my mom know about Hazel and believe me she is a prayer warrior and God listens to her! We love you guys and even though there may be some dark days ahead for you, remember you have the most awesome family and support system around. XXOOXX

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  5. Danielle HendersonApril 24, 2013 at 10:45 PM

    Lauren, I'm glad to hear the cancer is not in her bones! Fortunately, in the age we live in, there are SO many advancements in science... cancer treatment, research, etc. have come SO far! I just know from reading about how spunky and lively Miss Hazelnut is, that she will respond marvelously to treatment! If you would like to talk to someone about how chemo went for them, I could ask my boss to e-mail you. He's in his mid-30s and in the past year has gone from undergoing chemo to being completely cancer free! It will be a tough process, but I know that you and your family are strong, and have so much love that there is nothing that can truly break you down. I'm keeping you all in my thoughts every day... If you're ever at Los Robles with Miss Hazel, let me know, I have an aunt who is a nurse there and is absolutely wonderful. She volunteered to be a nurse during a surgery I had as a kid, and any other time I was in the hospital, she was a phenomenal nurse to have!

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  7. Aaron and you and Hazel are amazing! You are all so strong and are already being so positive, praying that the Lord will continue to strengthen you. Constantly praying for Hazel and the family, thank you so much for the updates, it helps being able to pray for specifics, you are all constantly in our minds and hearts, we love you all. Hazel will fight this, she is one strong little girl just like her parents! Love you!!!
    -Emely
    Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6)

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  8. Sending love and prayers from Michigan. We've been on the same journey as you're just beginning, and I recall the same thoughts and emotions you are expressing. I can attest to God's faithfulness and mercy! He loves us beyond comprehension! Keep your eyes focused on Him and He will direct your path and give you His peace!

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    1. Thank you Kevin! Keep on praying!

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  9. Cathy Murray LivingstonApril 25, 2013 at 1:00 PM

    I am Jennifer Hammersley's Aunt.....I am keeping Hazel and all of you in my prayers. Our God is an awesome God and nothing is impossible if we place our trust in him. May you fine peace and strength in his presence.

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  10. Dear Lauren,
    Thank you for sharing all of this information with us. Please know that you and Hazel and all of your family have been in my prayers every day since I first read about Hazel on fb. This weekend is Relay for Life in Moorpark. This is a wonderful time for me to focus on your family and other families battling cancer. I am sending you love and prayers.
    Sue Rossen

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  11. Hi Lauren, it's Shannon (Marci's daughter). I just wanted to send you, Aaron and the kids lots of love. My Mom has kept me updated on Hazel over the past few days and you have all been ever present in my heart and my prayers... I hope you & Aaron know how lucky Hazel is to have such strong, wise and loving parents!! Please let me know if I can do anything to help.

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  12. I just came across the story today on people.com of your little girl. My prayers are with you. I am a student so I cannot donate much but I WILL be donating. My prayers are with you and your little Hazelnut!

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  13. I just came across the story today on people.com of your little girl. My prayers are with you. I am a student so I cannot donate much but I WILL be donating. My prayers are with you and your little Hazelnut!

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  14. I just saw your story today. My nephew my sisters son was diagnosed with a nuroblastoma when he was 6 months old. He had a slight fever and just seemed in pain. She took him to the hospital the day after thanksgiving and that is when he was diagnosed. He is now 5 and totally healthy! you would have no idea that he ever had cancer. It was a long 2 years with 3 different surgerys that tumor just didn't want to go away but it's gone now! I alwasys told my sister there is a leasson we are suppose to be learning here. And everyone's lesson is different. I will be sending positive thoughts to your little girl. And hopefully soon this will be a a distant memory for your family to!

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  15. May God continue to bless your family with strength and I pray your baby girl has a speedy recovery. I know that Jesus and prayers are carrying her through this! As a mother, I pray for you extra strength for every second of the day. Hang in there and kiss Miss Hazel for me - right on the top of her head! <3

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