Radiation and More

     First, I want to apologize for the lack of updates.  I know there are so many of you who have been praying for our family and would like to know how we have been doing, and for that I am so thankful.  I will assure you that the missing updates are NOT because our little Hazelnut has been unwell, but because of the exact opposite reason!  She has been feeling better than she has ever felt since last April and has been busy being a normal little girl and growing hair!  We have been going out and making memories as much as we have been able to; including drives to the beach, the Huntington Library, tons of family dinners, and many wonderful quiet evenings at home.  The best part is that our little Hazelnut finished her last day of radiation on the 10th, so we have had FULL days at home! Here is what a typical day at radiation looked like:

• Hazel and I would wake up while it was still dark outside and drive to Children's Hospital every weekday to check in for radiation at 7:00 AM
• While we waited for our appointment, a nurse would help me get her changed into a hospital gown, take her vital signs, connect her heart/respiratory monitors, attach her pulse oximeter and blood pressure cuff, and get her line ready for her sedation medication.
• Once ready, we would head into the radiation check-in room.  On the computer screen was a picture of her face and a picture of her scans.  Each morning she would say "Those are my bones!" and the nurse would ask "Who is that cute little girl right there?" and Hazel would say, "That's Hazelnut!"

• We would then walk into the room with the radiation machine, which she would call "The Tunnel Ride" and I would hold her in my arms as they administer the propofol and she would fall asleep on my shoulder.  Every morning she would say to me, "Is it time for me to go on the the tunnel ride and take a nice nap on your shoulder?"  She got used to the routine of it all and actually took comfort in it and get excited each morning.
• Once asleep, they would lay her in a cushion that was shaped in the exact mold of her body.  It had lines on it that would match up to the lines they had drawn on her body.  This would ensure that she could be in the same position for radiation each and every time. 

• Going under sedation every day is a risk, and of course I worried every time.  But one time, there was a mistake that was made and her pump that administered her propofol was put at the wrong setting.  This made her receive too much of the medication and it caused her to stop breathing!  They immediately began breathing for her with a bag and turned off the medication.  Once she awoke, she was breathing on her own and everything was okay.  But needless to say, they never made that mistake again! 
• After laying her on the table, I would have to leave her and wait until they called me to tell she was in the recovery room, waking up. 
•  I would arrive, and in true Hazelnut fashion, she was chatting up the room and making friends with everyone.  The first week or two, however, this was not the case.  When we first started radiation, she still was not talking or walking and was not trusting ANY medical professional.  She was very fearful and wanted nothing to do with radiation.  But as time went on, she fell in love with the staff there and enjoyed every minute of this new routine.  In fact, she would cry every time we had to leave!  The last day was bittersweet for all of us.  Knowing that we were finished with another phase of treatment was unbelievably exciting, but leaving all of our new friends and family was very difficult.  I will be forever grateful to all of them for not only helping my daughter get through this phase, but for making it so enjoyable that she was sad to see it go.
  
  
  
  
  
  
  
  
       Now this week and next are going to be full of anxiety for our family, and we will be needing all of your prayers.  These are the weeks where our little Hazelnut will be having a complete disease evaluation before beginning her last phase of treatment.  She will be having a CT Scan, an MIBG scan, a bone marrow biopsy (a small surgical procedure where they puncture both hip bones to take bone marrow samples), and blood work done.  We have been functioning in a sweet reality of having a daughter who is well, but after these scans, we will know whether or not her cancer is gone!  My prayer and my hope is that God has allowed the chemo and stem cell transplant that almost took her life in November to have done it's job and gotten rid of every last remnant of Neuroblastoma hiding in her body.  So please join our family in this prayer.  Following these scans, we will have a meeting with her oncologist to discuss results and to go through what to expect from Immunotherapy (the last phase of treatment).  So as soon as we know anything, we will of course let you know!
       One last update, which I think is the best update, is that our little Hazelnut will be having her 3rd birthday this Saturday, January 25th!  Back in April, and once again in November, we were unsure if we would all see this birthday.  But our wonderful and amazing Father has brought us through the fires to see such a glorious day of celebration.  We are having a small family dinner to express our gratitude for being able to actually be together on this day.  If you would like to join us in our celebration, please lift our daughter up in prayer and enjoy something sweet in her honor!  We ask that no gifts be sent, but if you would like to make a donation in her name, please consider making it go towards finding a cure and sending it to Children's Neuroblastoma Cancer Fund.  You can find them at www.cncfhope.org 
  
  
  AGAIN THANK YOU ALL SO MUCH FOR YOUR LOVE & SUPPORT!