Scan Results

     Today was the day we received the results of all of Hazel's scans, and I have to say that our God is good!  We did not receive the coveted NED results we all were praying for, but we got as close to it as I think we possibly could have.  Our little Hazelnut's body is completely clear of cancer (praise God!!), but there was a small spot in her kidney that lit up on her MIBG scan.  Dr. Tran informed us that this small spot could either be residual disease, or actually just normal kidney uptake that is lighting up; and it is near IMPOSSIBLE to determine which it is.  So we do not have a definitive answer as to whether or not our daughter is cancer free, which is a bit frustrating.  However, the doctor's opinion is that it is much more likely that the small spot is normal kidney uptake and not cancer, and he is optimistic for her and very pleased with these results!  If it is residual disease, the spot is much smaller than any of her other scans and would more than likely be taken care of during Immunotherapy.  In addition, many of his other patients (which are also many of our good friends/family we have grown to know and love on this Neuroblastoma journey), have gone into Immunotherapy with quite a bit more disease than this potential spot on Hazel's kidney.  Furthermore, neuroblastoma is an extremely aggressive form of childhood cancer, that likes to progress when off chemotherapy and other forms of treatment, so that fact that Hazel showed absolutely no signs of progression is an extremely wonderful piece of news to hold on to! So overall, we are very encouraged and know that God is hearing the cries of our hearts.  I would like to spend some time to fill you all in on what is coming next, but we ended up waiting for two and a half hours for this appointment today, after having physical therapy in the morning; so we are  absolutely exhausted!  Please keep praying and I will post again very soon!

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:

     

Amazing God

*DAY +73 POST TRANSPLANT & 80 STRAIGHT DAYS IN THE HOSPITAL*

     The last few days have been nothing short of miraculous and remarkable.  Our little Hazel is finally back! She is talking and signing like her old self and has made such extreme progress in all her therapies. She has even been walking across the room with her walker! God has worked such a miracle and has given us the best Christmas present of all: WE ARE GOING HOME BY NEXT FRIDAY AND POSSIBLY EVEN ON CHRISTMAS EVE!!!!!!!!!!!  We never dared to hope for this after hearing Hazel's initial assessment of needing to stay 4-6 weeks, but God knows the deepest desires of our hearts and gave such strength to our little girl that He is making it happen! We are beyond elated and hope you all will celebrate with us!

     One more thing I would like to share is about many messages I have received over the last eight months. Many people have commented or asked how a loving and good God could have done something like this to our daughter.  This very question is something we have asked ourselves as well. And honestly, I truly dislike that cookie cutter answer of "It's all in the plan". As Christian's, yes, we do believe that God has a bigger plan and that whatever happens in our short lives while on earth, it plays a small role in the bigger picture. But I also believe there is something else at play here. I truly believe that cancer is not something that God inflicts on His people, but it is a product of living in a broken, sinful world where Satan is allowed to do his worst. Our family has been inflicted with this calamity, sure, but so many unexpected things have come out of it. It says in the Bible that God uses our suffering and pulls out the good from it. I have seen God more vividly than I ever dreamed possible, and so have my children. Any doubts that I had in my belief in Him have been dispelled and I would not change that for anything. Also, He has shown me the amazing intricacies and power of the human body which have only led me to believe more and more that He divinely created us. Its doesn't make any sense to me that Hazel's body, fighting the way it has, could be an accident. Also, we have seen THOUSANDS of people affected for good because of our family's journey. We have been given the ability to change the world of childhood cancer at a global scale and we feel so thankful for that as well. We also have all grown so close together as a family in a way that we would never have otherwise. We take NOTHING for granted anymore. We also have seen that without this suffering, our family would not understand compassion the way that we have. Our kids and family are helping & caring for others and we have seen so much compassion for our family as well.  And lastly, I have come to understand God's long suffering in such a tangible way and have been able to learn more from that than any other thing in my life. He suffered in the most horrific way. Not only did Jesus (God incarnate) have to die and suffer in the most horrific way imaginable, but His Father had to watch His son go through it. I feel, in some small way, we have been able to understand that suffering and are able to learn so much from Him in how He handled it. He has given us so much strength, peace, courage and understanding. And I absolutely know that is GRIEVES HIS HEART to watch his children go through this kind of suffering, but ultimately we know that it will only make all of eternity with no suffering that much sweeter!

     I will let you all know what day we get to go home, but I may not post for a little while because I wanted to enjoy EVERY SECOND we get a home! Have a wonderful Christmas!!!

Rehab

*DAY +66 POST TRANSPLANT & 73 STRAIGHT DAYS IN THE HOSPITAL*

     First, I want to thank you all so much for your comments, messages, thoughts and prayers over these last 10 days.  It has been so busy, and quite overwhelming at times, so knowing how many people are behind us and rooting for our little family helps keep us going.  Now our little Hazelnut has been moved to the inpatient rehabilitation floor and has been there since Monday.  We knew she had a long road of recovery ahead of her and were hoping so much that she could do it from home, but this was not the case.  Dr. Craig, the head rehab doctor told us she is a very complex patient and may need anywhere from 4-6 weeks of inpatient therapy.  Of course we will do whatever it takes to get our daughter back to where she needs to be, but this news was so heartbreaking for us.  We wanted so badly to be home for Christmas and to finally be all together as a family once again, and now we have to wait so much longer!  They did tell us, however, that in all likelihood, she can get a 12-hour leave pass to come home on Christmas day! So we will take it!  

     Her days on this unit are intense and long.  She goes through three hours of therapies, consisting of: speech, occupational and physical.  These are usually broken up into half-hour or hour sessions spread throughout the day with breaks for meals and nap time.  As part of her physical therapy she has had two casts put on her legs.  Her heels, calves and hamstrings are so tight after being in bed as long as she was, and the casts are being used to helps stretch them out so we can get her standing and walking again. Upon arrival here, Hazel was very weary and untrusting of everyone around her.  The huge strides she made before seemed to disappear overnight.  She clammed up and seemed almost defeated.  This of course took quite a toll on me (which everyone seemed to notice).  But as time has gone on, she has warmed up and become comfortable with her routine and her therapists, which is making all of our jobs much easier.  Another thing that has lifted her spirits is the fact that we are finally allowed to go downstairs and outside!!!  This has done wonders for all of us!!  She even had her siblings come for a visit and many tears were shed by all of us.  

     Now on top of rehab, we have also had to move forward with her cancer treatment, which means we began radiation on Thursday.  I think I will save all the details of this for another post, because it is a complex process.  But I do want to share something else that has been truly remarkable.  Over this last week, I have been praying, and asking others to pray very specifically that we could finally see a glimmer of our little Hazelnut come through.  It has been about a month and a half since we have really seen our daughter and Aaron and I have had hearts full of anguish.  Well I am happy to report that our God is a faithful God!  He knows when our hearts are weary and how to lift us up.  For He promises in Isaiah 40:31: "but they who wait for the Lord shall renew their strength; they shall mount up on wings like eagles; they shall run and not be weary; they shall walk and not faint." His answer to prayer came Thursday afternoon.  It was as if something was plugged in and Hazel just showed up!  She has been talking so much and has used so many words and phrases that are so very specific to her and it has been unbelievable!  She also has sang the lyrics to entire songs, is playing with toys the way they should be played with, is staying on task and is being playful and goofy!  It has been a wondrous few days so thank you, thank you, thank you for your prayers!!!!

Best Days In Weeks!

*DAY +56 POST TRANSPLANT & 63 STRAIGHT DAYS IN THE HOSPITAL*

     I came back to the hospital on Tuesday after a much needed break at home and a quick weekend getaway with Aaron (something we absolutely needed much more than we realized), and our little Hazelnut has made some huge strides!  She has been saying words and even took a few steps!  When she walked yesterday, she was so proud of herself and started smiling halfway through.  She walked back and forth from the couch the the bed about three or four time and that tired her out for the rest of the day and after seemed to shut down.  When she woke up this morning, she still seemed to be in a bad mood and quite tired, so we didn't push her at all.  But then, as we watched the movie "Brave", she started laughing and perked right up.  After this mood change things started happening!  She spent the whole afternoon and evening saying so many different words (mostly just one at a time, but a few two-word phrases), smiling and giggling, and answering simple questions!  She would also complete song lyrics by filling in words.  For example, I would sing "Twinkle, twinkle, little:" and she would say "star"!  While watching her favorite movie "Tangled" she would say words just before a line was spoken.  And, most preciously, she said "AMEN" after we finished praying before bedtime! She hasn't done any of this in weeks, and today I felt like we had the small first glimpse of our little Hazelnut, so I am absolutely elated! THANK YOU GOD FOR GIVING US A MIRACLE!!!
     Another wonderful thing that happened today was that we were moved out of the Bone Marrow Transplant Unit to the regular Oncology Unit.  This means Hazel is out of isolation and we can get her out and about.  I know this will do wonders for her!  It also means I don't have to leave the room every time I need to use the restroom or eat; I don't have to wear blue shoe covers at all times; and I can see more of my family while here at the hospital.  So this is great news for me as well.  
     Hazel still has quite a bit of recovery ahead of her, and tomorrow she will be evaluated by the rehabilitation team to determine if she will need be moved upstairs for inpatient rehab, and for how long.  Please pray that if she needs it, it will only be for a short while, and that God will aid her little body in a speedy recovery so we can get home!  Physically, her body is showing small improvements every day and we are so much more hopeful that it is being healed the way that it needs to be, so it is clear to us that God has been hearing all of our cries!