Tests

     Today our little Hazelnut is checking in at 6:00 AM to have her bone marrow biopsy done. This is the almost the last of her disease evaluation tests. Her CT scan  was done last week and her MIBG scan was done yesterday. She still needs her blood and urine tested and we will go over all of the results on Tuesday with her oncologist. However, if there is any sign of disease growth or progression, I will receive a phone call to come in to reevaluate her treatment plan. So naturally Aaron and I are absolute nervous wrecks, and each time the phone rings from Children's Hospital, my heart leaps out of my chest. We ask you now to join us in prayer over these next few days for healing and NED (No Evidence of Disease) results. We know our God has been doing a mighty work within our daughter and have faith that, if He so chooses, He will bless her with complete healing. We hope He may give us the longing of our hearts, but also ask that if Hazel will continue to fight against the beast we have come to know as Neuroblastoma, that we will trust and rely on Him and hold fast to His promises that He can, has and will carry us through the most brutal of storms. 

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!
  
  
  
  
  

There's No Place Like Home

     For those of you who may not have seen the update on the Facebook page, Hazel was discharged from the hospital on Christmas Eve and we have been home ever since!  To say that we received the best Christmas gift of all is an understatement!  GOD IS SO FAITHFUL!  We were prepared for a 4-6week stay in the inpatient rehab and IT IS ONLY THROUGH YOUR PRAYERS AND HIS MIRACLE THAT WE WERE ABLE TO GO HOME!  I am sure that you can all guess that we have spent little time on the computer, hence the lack of updates; but I assure you that life at home has been absolutely marvelous.  We still drive to the hospital every weekday morning for radiation (a post on that will come next), but we are usually back home in the 10:00 AM hour, so we get a full day at home and get to sleep in our own beds!  And our little Hazelnut has improved by leaps and bounds every day which has been wondrous to behold.   She seems to feel very well and is so unbelievably happy to be at home with her family.  She is singing, talking, playing and behaving exactly like her old, silly self, as if nothing happened.  But one difference we have noticed is how much more mature and grown up she seems.  She is still struggling physically and is working really hard at walking and moving around (mostly without the walker!), and being around her siblings has been motivating her tremendously.  Our youngest, Jonah, is just now beginning to walk; and every time he gets up to do it, Hazel yells, "My turn!", and follows suit.  There's nothing like a good bit of healthy competition, huh?!  Micah and Elizabeth, her other siblings, have shown such gratefulness at us being home.  Being separated for almost three months certainly took a toll on them, and they keep saying how great it is to feel "like normal" again.  And they have been extremely sweet with Hazel.  They want to take care of her most chances that they get and are very concerned with her well being.  Being four young children, they still have squabbles of course; however, it is these moments that I find being most thankful for.  The normal, mundane moments that we weren't even sure we would get again...
     Our Christmas was very blessed by the generosity of others who provided our whole family with gifts and stocking stuffers.  I was worried about being able to make this Christmas special, being in the hospital, but because of these wonderful people who have cared for our family, our kids had such a magical Christmas!  Here are a few photos from the morning: