Wednesday, February 19, 2014

Cycle One DONE!

   Our little Hazelnut was able to be discharged on Valentine's Day and has officially and successfully completed Cycle #1 of Immunotherapy!!  It feels utterly extraordinary to be able to say that she is one-six finished with her very last phase of treatment, but after last week, I know it will be a difficult journey.  Overall, it was a very challenging experience (but I kept telling myself it was not nearly as difficult as the ICU!), with Hazel never feeling comfortable, losing her appetite, being overcome with exhaustion (from the discomfort and the around the clock Benadryl), and fighting pain, fevers and allergic reactions.     The first day she started the Ch 14.18, she was experiencing quite a bit of pain.  It came upon her almost immediately and she was squirming, crying out and kept saying "I want to go home!". The nurses and doctors had to raise the pain medication drip several different times until we found the right dose, but she never really recovered or got comfortable and no amount of pain meds would have been able to help her.  In addition, her whole body turned red and hot.  However, she never broke our in hives or had any swelling, so the team was unsure if it was an allergic reaction or not.  Thankfully, she made it through the day (and each subsequent day) without ever having to slow or stop the infusion and was able to receive the whole dose, which is the most important factor of this treatment.  In the evening, the pump was turned off, and she was weaned off the pain medication slowly.  She immediately felt better once the infusion was done, but never got to 100%.  In fact, much different than I had hoped, we had many a sleepless nights during this hospital stay.  The second, third and fourth days, her pain was managed so much better!  She still felt very unwell and uncomfortable, but was no longer crying out.  She hardly ever got out of bed, if at all, and would not eat anything.  Then each night, just as the infusion was finishing, Hazel began breaking out in hives and would have swelling in her face and lips.  One night she began coughing so much that she required a breathing treatment.  It was certainly a frightening time, but I had so much confidence in the fact that the Lord has brought us through much worse!  And the medical team that administers this treatment is extremely experienced and knew exactly what to do in each situation we faced.  Now that we have one cycle under our belts, we now know what to expect and what treatments work best to manage Hazel's side effects, so hopefully it will not be nearly as challenging during cycles #3 & #5.  Cycles #2 (which begins March 3rd) & #4 add a second infusion to the mix, so we will have to face some more trial and error.  Here are a few photos from the week:








     Since coming home, Hazel has felt so much better!  We walked through the door to our home and she just hit the ground running.  The doctors weren't kidding when they said once the infusion is done, it's done! The only thing she has been struggling with has been her appetite.  It took up until today for it to really start coming back.  She also began her course of Accutane, which requires her to take three pills in the morning and three pills in the evening.  I have been feeling very anxious about this step, trying to imagine how we were going to get a newly three year old to swallow six pills a day; but boy she takes these things like a champ!  She has just blown us away with her resilience and ability to adapt to new situations.  It has been so much harder for Aaron and I to constantly readjust to new normals every few weeks, but she and her siblings take these moments in their stride.  God has been so faithful to lift these children up and I will be forever grateful.  

27 comments:

  1. This post made my day! I pray for Hazel and your family and can't believe just how amazing Hazel is! This treatment gave the Doctors and nurses a chance to see how Hazel handle's this and next time should be much easier to keep Hazel more comfortable. Thank-you so much for this wonderful update. God Bless you all.

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  2. I love you sweetie always in my heart and prayers forever Marie xoxox

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  3. Bless you sweet baby. Keep fighting it & never lose faith. You are one amazing and strong little girl. So beautiful too!

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  4. God has plans for Hazel. She is in our prayers.

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  5. Always in my prayers!-Heather

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  6. Praying for your little beautiful girl

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  7. she is so amazing it is so hard for u will keep praying

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  8. Praise Jesus you are doing better each day I just am so happy to hear this great news.









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  9. Thank you for the update. I'm so glad she is home and feeling Better. My prayers keep coming... ❤

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  10. May the Lord Bless you and your family. I keep Hazel in my morning prayers, that she wakes each day feeling stronger and healthier.

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  11. Bless you sweet and dear Hazel, I think of you every day...you are so strong and so brave...love you dear Hazel

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  12. Well done Hazel! We are all praying and thinking of you! xx

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  13. She is absolutely gorgeous! What a little fighter she is. Hoping the rest of her treatments go smoothly and paraying she beats this thing!

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  14. Hazel is amazing!! I am overjoyed at hearing she is doing better. Last phase of treatment will be finished in no time! Praying for the whole family, always! I'm so happy she is able to be home, too. That is like chicken soup for the soul.
    God bless you all <3

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  15. Thoughts & prayers to Hazel and the family!!! OXOX

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  16. Praying for you beautiful Hazel and your loving family to.:)

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  17. So glad shes home she is such a little fighter. Such a beautiful little.lady. Praying for her to be healed so she can have a normal childhood free of pain. God bless you all

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  18. I always look so forward to your updates, Hazel is the most precious little girl. she is so strong, brave and such a little fighter and such an inspiration to all of us. Keep fighting little one and we will keep the prayers coming. don't loose that beautiful smile.

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  19. I'm so glad you all made it through. I've been thinking and praying for all of you.

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  20. You guys have been through so much-just hang on a little longer. She is a special child, bound for great things! Hugs

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  21. She is just so darn precious!!!! Yeah one down...PTL!!!!

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  22. Many prayers, hugs, and kisses for your little sweetheart and the whole family!! These pictures break my heart -- so glad to hear she is home and feeling well now.

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  23. May God keep on blessing you guys, I pray so much to see you baby get all of her health back.

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  24. Sweet Darling Hazel, we love you and have been praying since your journey began and will continue to do so. Prayers are powerful, and God is good and ever loving.

    So pleased to know that the first step is over...and so happy that Hazel hit the "ground and running" when she got home. What a little trooper!

    Our hearts are with all of you...May God continue to watch and provide for all of your needs and grant all of your prayers.

    Blessings and lots of hugs~

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  25. What a fighter, with an amazing supportive army of family, friends and medical staff behind her... GO HAZEL!!! Much love and blessings from New Zealand.

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