Monday, August 29, 2016

Treatment

Today is the day that our new normal begins.

Today, we made our final decision and had a double port (which solved our dilemma!) placed inside our daughter.

Today is the first day of a new treatment protocol that has no protocol.

Today is the day that our brave little Hazelnut begins her fight against cancer for the second time.

Today, chemo has already begun.

At this very moment, I am sitting next to my beautiful daughter as her first dose of chemo flows through her veins.  To be honest, I am heartbroken, terrified, anxious and in utter disbelief.  This all still feels so absolutely unreal.  

While I cope with this surreal moment, I figured I would take another one to update all of you.  We spoke with the doctor last week to discuss Hazel's "treatment plan".  As some of you may know, when a child is first diagnosed with cancer, the doctor gives the family a treatment protocol, or what we like to call a "roadmap".  When a child relapses, this is not the case, so I use the term "treatment plan" fairly loosely.  Many times, children who relapse do not respond to the first form of treatment, so many different options are tried.  I like to describe it like this:  The cancer comes back, so you throw everything you know of at it and hope something sticks.  

So right now, we are throwing our first punch with the new treatment of Immunotherapy and Chemotherapy together that I have detailed before.  The doctor actually seemed slightly optimistic, which is not generally the attitude towards relapsed Neuroblastoma.  She has seen very promising results recently, and has hope that Hazel will respond favorably.  We will do this treatment inpatient this week, then again three weeks from now.  Once that second round is finished, Hazel will have another round of scans to see how she is responding (which will fall sometime at the end of September).  If she is responding, then it will be very good news, and we will continue on the same protocol with the hope that it will just melt this cancer away.  If she remains stable, we will, more than likely, continue with the protocol and reassess at the next round of scans.  If she has progressed, then we move onto our next line of defense, which in our case will be the targeted therapy for her ALK mutation.  We will continue with this wait and see approach, and change our course if necessary until we bury this thing in the ground!

Many families have contacted me saying that their children have done very well on this treatment, and even get to stay home the whole two weeks between cycles with very little side effects.  So it is my hope that we can have some sense of normalcy in between.  However, it is still very possible that the treatment takes a toll on her and we end up back here more often than we would like. So please be praying that this does not happen.  As we get more settled in our room this week, I will write the post I have been planning that details how you can specifically be praying for us and helping our family during this time. For now, just pray that this treatment, and the supplemental things we are doing at home will all work together over the course of the next few weeks and do what Hazel wants it to do and "kick this cancer in the butt!".


11 comments:

  1. Poor sweet Hazel is such a fighter. My prayers are coming her and your way.

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  2. Sending love and healing prayers to sweet Hazel from Australia xxx ���� ��

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  3. Will pray and pray and pray for you. God will see you thru this again and praying his mercy, love and His strength will uphold you every day. ❤️

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  4. Having faith in the immunotherapy! Sending prayers.

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  5. Have read so many wonderful things about immunotherapy. Praying for that sweet little girl constantly!

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  6. Love and prayers shes a strong little girl who will fight this once and for all love u all

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  7. Prayers and good thoughts in my heart for you and your beautiful girl

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  8. Praying continuously for your sweet precious beautiful baby. God heal this precious baby from the tip of her head to the soles of her little feet, in Jesus name, Amen!

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  9. Thinking of you all from here in Australia.

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  10. Praying for Hazel and your entire family from us in the CTICU. ❤️

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