Monday, February 10, 2014

Immunotherapy/Ch 14.18 Treatment (LONG POST AHEAD)

     It is 11:00pm and I am sitting in the all too familiar hospital window after checking in for the beginning of the first cycle of Immunotherapy.  Hazel begins her first infusion tomorrow and we ask you to lift her up in prayer as we face a new and unknown phase of treatment.  The feelings I have remind me of those that I faced before Hazel started chemo.  Even though we have an understanding of what this phase will entail, and an army of Neuroblastoma fighters who have forged a path ahead of us for us to look to; we have absolutely no idea how this will affect our little Hazelnut individually and this makes me quite a bit uneasy.  The one major difference between now and then, is that I have almost an entire year to look back on and see how my mighty God carried us through the most tough and grueling times of our life.  This allows me to have much more strength and confidence than I could have mustered last April.  2 Timothy 1:7 says "For God gave us a spirit, not of fear, but of power and love and self control", and I trust in His promise in Romans 15:13 "May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit, you may abound in hope".
     
     Now here is some information about Immunotherapy/Ch 14.18 Treatment (taken from Children's Neuroblastoma Cancer Foundation's website):

  • Neuroblastoma can elude the immune system by using a number of tactics. Specifically, it is able to suppress the immune system’s capacity to identify and destroy cancer cells. If the patient’s body is to play a role in killing the neuroblastoma cells, the immune system needs some help in its ability to locate the cancerous cells. Helping the immune system find the neuroblastoma cells is the purpose of the ch14.18 therapy. 
  • ch14.18 is a type of “monoclonal antibody” (mAb). The ch14.18 treatment is called an “anti-GD2” treatment because the ch14.18 antibody targets a substance on the surface of neuroblastoma cells called GD2. ch14.18 is a protein which has been designed to bind to the GD2. Once the ch14.18 binds to the GD2, it sends a signal to the body that tells the immune system a foreign substance has been found which needs to be killed. This then stimulates a response from the body’s own immune system to kill the neuroblastoma cell, 1 which is why the ch14.18 treatment is referred to as “immunotherapy.” 
  • The “ch” in ch14.18 refers to the term “chimeric” and means that the antibody has been created from two different sources – in the case of ch14.18, mouse and human cells (25% mouse, 75% human). 
  • ch14.18 is administered over 5 courses, approximately once per month over five months. It is given in conjunction with either GM-CSF or Interleuken-2 (IL-2), agents known as “cytokines” that work to stimulate the immune system once the ch14.18 attaches to any neuroblastoma cells. Each round of immunotherapy is followed by 2 weeks of Accutane treatment at home.
  • GM-CSF is a daily shot that Hazel will receive with Cycles 1, 3 & 5.  These shots could make her experience things like: bone pain, feeling like she has the flu, tiredness and weakness and stomach upset.
  •  IL-2 is a daily infusion she will receive for four days prior to and in conjunction with the Ch 14.18 infusions during Cycles 2 & 4.   
  • Isotretinoin, which is usually referred to as “Accutane”, is derived from vitamin A. It encourages immature neuroblastoma cells to stop dividing and proliferating, and ultimately die.  Hazel will receive a two week course of Accutane following each cycle, and will receive one more two week course to serve at Cycle 6 of her Immunotherapy protocol.
     The most concerning part for us are the many side effects involved (so please pray specifically for these!!).  Unlike chemo, Hazel will finish each infusion and is expected to bounce back quickly and not have the long lasting side effects that would send us back to the hospital a week later (i.e. fever, infections, low blood counts, etc.).  That being said, DURING the infusions, she could experience quite a lot of misery.  Some of the likely side effects include:
  • Pain (each child is started on a morphine drip before the infusion even starts, in order to try and stay ahead of the pain)
  • Allergic Reactions
  • Fever
  • Constipation
  • Nausea
  • Blood Pressure Changes
  • Fluid Retention
  • High Heart Rate
  • Flu like symptoms
  • Fatigue
  • Drop in platelet counts
  • Possible affects to kidneys and liver (this worries me most due to the damage that has been done to these before during transplant)
     Here is what our inpatient schedule will look like (barring any complications) over the next several months:
  • Cycle #1  2/9-2/14 or 15
  • Cycle #2  3/2-3/7  Home for Saturday then back in 3/9-3/14 or 15
  • Cycle #3  4/6-4/11 or 12
  • Cycle #4  4/28-5/2 Home for Saturday then back in 5/4-5/9 or 10
  • Cycle #5  6/1-6/6 or 7  **OUR VERY LAST INPATIENT STAY!!**
  • Cycle #6  Accutane taken at home 7/7-7/20 **HOPEFULLY THE VERY LAST DAY OF TREATMENT!!
     If you have stuck with me this long, first let me say thank you!  Secondly, as you can see, these next several months will continue to be a challenge for our family and we will need a lot of prayers and support.  But it is also very exciting for us to say we are starting the very last phase of treatment and finally be able to see the light at the end of what has been a very dark tunnel.  We could not have gotten to this place without our God, our family and friends and all of you!!!

34 comments:

  1. Hang in there!!! GOD is good and he will be with you and your family through this next battle! Hugs and Kisses from the Olafson Gang! We are praying for Hazel!!!!

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  2. Hazel is a strong and amazing little girl no doubt she will kick this battles butt.. she is destined for great things .. stay strong sweet girl .. your family is in my prayers

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  3. I came across your blog just a few months ago. I have a daughter-in-law who is going through chemo right now for Hodgkins Lymphoma. I pray for her everyday and have been including your little Hazlenut in those prayers also. Through your blog I feel like I know you and your family. I gain strength and hope through you. May God bless your little Hazelnut and guide her safely through this next phase. You have a beautiful little girl and she is a fighter. She will get through this I just know it. God bless you all.
    Love, Kris from Surprise Arizona

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  4. I have been with you in spirit all through this journey. One of those thousands of strangers touched by her story and your words, that's me. I am simultaneously sad Hazel has to go through so much, and grateful that this treatment exists. It's amazing how the researchers have come up with these treatments, and it makes me see why it's SO important to keep funding their research so they can find more and better (less toxic, inshallah) treatments and someday a cure. Hazel is a special soul and I pray that she continues to respond well to her treatments. Cancer has now, unfortunately touched me personally. Please also pray for Christopher Daniel. He is at CHLA with bile duct cancer. He can be seen walking the halls when he's not in too much pain. He and his family desperately need your prayers. Thank you, Lauren, for taking the time with all that you are going through to update us about Hazel, whom we all love so much. Blessed be.

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  5. Just be strong! Hazel needs to see you like that. God bless!

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  6. We will be hangnig in there with you right to the end and be here to celebrate with you then too. Till then we will continue to cover you all in prayer and trust in our mighty God to finish what he has started and bring Hazel to complete recovery. Stay strong in Him, Blessings from Kuala Lumpur

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  7. I pray for Hazel very often. I am praying for the side effects to be very very minimal, and that Hazle will just sail through, as God carries her through. You are wonderful parents, and you give God all the glory! He is blessing you! Love, Linda

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  8. I will be praying for little Hazel and you . To give you strength . Please give her hugs may God Poor his Blessings on you both Hes a miracle working God I know cause my girl almost died and is here . And Hazel is a miracle also ♥

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  9. We are still here with you and will continue to be here long after the treatments end. I am looking forward to the posts and pictures of her first day of kindergarten, and beyond. As long as I can, I will pray for Hazel and your family. Eternal health and happiness. Thank you God for your mercy and love as you continue to heal Hazel.
    Love, the Kelly Family VA

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  10. I am on board and continue to love and pray daily for hazelnut and the entire family.Marie

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  11. So glad I just seen hazels page,Ipray for lots of these beautiful children,and will pray for her! Father iI pray that this lil angel has the strenght to keep fighting,as she trys a new treatment protect her from side effects lord,I pray that you have a plan,heal this beautiful baby lord,we have faith in all that u do lord,you deserve all the praise and glory,in jesus name

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  12. praying for hazel

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  13. God bless little Hazel. I think of her daily and have been following your facebook. Universal Studios will rock with Hazel!!!! :) Blessings, the Young Family in Chatsworth, California

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  14. Thanks for your the update Lauren...so sorry Hazel is going to have to go through this...I pray regularly for her and the Hammersley family. Peace, love and prayers...Maryann.

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  15. I will be praying for her!!! I am going through this myself right now! I am in a lot of pain and having the flu like symptoms. I am so glad that you are updating us! I know better how to pray for her. I will be praying for the rest of the family during this time also. I am praying that you all stay healthy! Right now, my family and I have colds. And it has hit me harder then everyone else. :( May God bless you all!

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    1. Wishing you God's blessings as you continue to fight for good health. I hope your cold goes away quickly so your body can focus all of its energy on your treatment.

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  16. I was led to your story last August when our precious friends had their little girl, Mia (same age as Hazel) diagnosed here in North Carolina. Mia is getting her stem cell transplant today. Hazel's courage and your amazing words through this journey are always so comforting and inspiring. So from the bottom of our hearts, thank you!!! And know that we pray for Hazel and your family all the time. I know God will continue to watch over her through this last leg of the treatments and I pray you all feel His peace. Lots of love from NC

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  17. I did a Praise report on Hazel yesterday at our church, I am believing for a complete healing of this terrible cancer. Prayers are continuing for this precious one. Hugs to all!

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  18. I have followed little Hazel for many months. Hazel and your family will forever be in my pryers. I pray they find a cure for childhood cancer real soon also. These children need to need to live a pain free life. After this treatment little Hazel is going to be feeling wonderful. She has done so well and given others so much to hope for. Thank-you for your update and best wishes for this treatment to be fairly painless with little or no side effects.

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  19. I am praying for little Hazelnut and your family. May God wrap his arms around her and lift her up.

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  20. Praying for sweet Hazel over the next months and asking God to help her through the various stages of her treatments. He is with you always, especially when you feel He's not. God bless Hazel and your family.

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  21. thank you mommie, for sharing lil nut with us, we are soo grateful. my you and daddy stay strong. oxox

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  22. I stumbled upon your blog and have been praying for your little Hazel. I am a teacher and have had two children with cancer. It was tough but I can tell you there is light at the end of the tunnel and there is a band of children in my class (all of them) who are praying for her. I teach fourth grade at a Christian school in Whittier and her name is often on our prayer requests papers. My boys and girls are standing and believing for Hazel.

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  23. I believe in Hazel and her full recovery...God is god and will help Hazel all the way....fight Hazel, fight like never before....you are an amazing little girl....I am thinking of you every day, all my prays for you/jasmina from Sweden

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  24. Many prayers for yo and all of your family

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  25. Sweet Hazel I pray for you...God is good and has done miracles, this is just one more hurdle on your way to recovery...I will keep you in my prayers and hope for the best results.

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  26. Praying for all of you and especially for Hazel that most days she has her lovely smile on.

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  27. May God be with you every second Hazel...I have been praying for you sweet child. You need God's prayers constantly. Be strong and of good courage, be not afraid, neither be thou dismayed, for the LORD thy God is with thee whithersoever thou goest! Joshua 1:9

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  28. Just as we all have sent thoughts and prayers in the past, we will continue in the future. Hazel is providing inspiration and hope to other families whose little ones are fighting neuroblastoma too. This grandma sends hugs to you all.

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  29. Sending your prayers, I am hoping she is feeling a little bit better than earlier this evening. I am so sorry to hear she is in pain and having an allergic reaction, always breaks my heart to think of her with anything other than that big smile. Praying she has a restful night and that tomorrow is a much better day. She is amazing and such a fighter, God bless her amazing spunk and spirit. Sending prayer upon prayer, I can only imagine how difficult of a day it has been. God bless and prayers of great healing.

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  30. Halo from Cape Town South Africa.
    I am praying with you for her.
    Be Blessed.

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