Next Cycle of Immunotherapy and Some Announcements!

     These past couple of weeks have been wonderful, but overwhelmingly busy for our little family.  We have had quite a lot of things happening, aside from Hazel's treatment and appointments that have stretched us very thin.  At times it has taken all that I have just to think straight, so writing was practically impossible.  That being said, we have also experienced so much joy at the many blessings our God has showered upon us!  The most prevalent being that Hazel has felt extremely well and we have all been able to live as a normal family!  One of the highlights of the last couple of weeks was being able to go out to the move theaters, TOGETHER!!

     Today, we have just checked in to being Cycle #2 of Immunotherapy.  It is a two week stay, with a break to go home over the weekend.  The first week consists of a four day infusion of IL-2, which is not the solution that caused so many difficult side-effects during the last cycle.  Most kids sail through it, maybe feeling a bit tired.  So our prayer is that it will be the same for our little Hazelnut.  So far, she has been hooked up to the infusion for three-and-a-half hours and seems to be doing well, so my hopes are high.  Next week is a double infusion of IL-2 and Ch 14.18 (the solution from Cycle #1), and we expect to face a much rougher time.  My prayer is that since we have been through the Ch 14.18 infusion once, and we know what seems to best help her, that we will be able to stay on top of the ball and keep her as comfortable as possible.  We will keep you updated over these next few weeks and will let you know where we need your prayers the most.

     Now I would like to share some of the amazing things that have been happening over the last several weeks and some upcoming events:

On March 15, our family and friends will be participating in the 11th Annual LAFD/LAPD St. Baldrick's Event, at Fire Station 89 in North Hollywood, California.  The many participants of this wonderful event will be shaving their heads to raise much needed funds for childhood cancer research.  All money raised goes to The St. Baldrick's Foundation, a volunteer based charity that funds more in childhood cancer research grants than any organization except the U.S. Government.  We have created a TEAM HAZEL for this event, and our goal is to help raise at least $1000.  If you feel compelled to donate to our cause please visit our page at http://www.stbaldricks.org/teams/mypage/91111/2014 and donate now!

From The Make-A-Wish Tri-Counties Facebook page: "Hazel will be the official Wish Kid Ambassador for our local chapter of Make-A-Wish for their 2014 Wishes in Flight campaign, with a goal of one million donated miles!  She will be the face of the local campaign and will help raise awareness about the great need for donated airline miles. Many wishes like Hazel’s come true with help from frequent fliers. Their donations of air miles are essential to getting wish kids to their destinations. The Wishes in FlightSM miles donation program is easy – and the miles never expire once donated. 63 percent of the wishes granted locally by Make-A-Wish Tri-Counties, who serves Ventura, Santa Barbara and San Luis Obispo counties, include air travel for families to reach their wish destinations.  Locally 8 million donated airline miles are needed to provide wish travel for wish kids and their families each year. Less than 2 million are donated each year, making airline tickets the most avoidable but significant expense for the local chapter. Currently the local Make-A-Wish chapter has depleted their donated airline miles bank, and is paying rack rate for all tickets purchased."


     Please consider making a donation in Hazel's honor to help make some dreams come true!  To donate Delta, US Airways, Continental, United or JetBlue frequent flyer miles to Make-A-Wish Tri-Counties, go to http://tri-counties.wish.org/ways-to-help/giving/airline-miles or call 805-676-9474 x4. 

The wonderful Talbert Family Foundation, which has supported our family so much over this last year has been chosen for the second year in a row by Jersey Mikes' Month of Giving Campaign.  This means that for the entire month of March, all Los Angeles area Jersey Mikes Subs Restaurants will donate 100%(!!!) of its proceeds to this organization.  In turn, 100% goes directly to the families, like ours, to help them through the many difficulties that comes with a diagnosis like Hazel's.  If you live in the area, please take the time to show your support and enjoy a sub!

Last, but certainly not least, this past weekend, we had an amazing opportunity to participate in something that we hope will impact the world of childhood cancer awareness in a BIG, BIG way.  We partnered with Paramount Pictures, The Bumpus Family (Lilly Bumpus is a young girl who has beaten Ewing's Sarcoma at just over a year old.  You can find her on Facebook), and several other local cancer kiddos to film a documentary!  It's main focus is the abysmal 3.8% of cancer funding that our kids receive. Our hope and prayer is that it can be a wide release and garner the attention that this subject deserves in the hopes of moving the world to action!  We will keep you updated as to when it will be finished and when and where it will be released!

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.  

Immunotherapy/Ch 14.18 Treatment (LONG POST AHEAD)

     It is 11:00pm and I am sitting in the all too familiar hospital window after checking in for the beginning of the first cycle of Immunotherapy.  Hazel begins her first infusion tomorrow and we ask you to lift her up in prayer as we face a new and unknown phase of treatment.  The feelings I have remind me of those that I faced before Hazel started chemo.  Even though we have an understanding of what this phase will entail, and an army of Neuroblastoma fighters who have forged a path ahead of us for us to look to; we have absolutely no idea how this will affect our little Hazelnut individually and this makes me quite a bit uneasy.  The one major difference between now and then, is that I have almost an entire year to look back on and see how my mighty God carried us through the most tough and grueling times of our life.  This allows me to have much more strength and confidence than I could have mustered last April.  2 Timothy 1:7 says "For God gave us a spirit, not of fear, but of power and love and self control", and I trust in His promise in Romans 15:13 "May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit, you may abound in hope".
     
     Now here is some information about Immunotherapy/Ch 14.18 Treatment (taken from Children's Neuroblastoma Cancer Foundation's website):

• Neuroblastoma can elude the immune system by using a number of tactics. Specifically, it is able to suppress the immune system’s capacity to identify and destroy cancer cells. If the patient’s body is to play a role in killing the neuroblastoma cells, the immune system needs some help in its ability to locate the cancerous cells. Helping the immune system find the neuroblastoma cells is the purpose of the ch14.18 therapy. 
• ch14.18 is a type of “monoclonal antibody” (mAb). The ch14.18 treatment is called an “anti-GD2” treatment because the ch14.18 antibody targets a substance on the surface of neuroblastoma cells called GD2. ch14.18 is a protein which has been designed to bind to the GD2. Once the ch14.18 binds to the GD2, it sends a signal to the body that tells the immune system a foreign substance has been found which needs to be killed. This then stimulates a response from the body’s own immune system to kill the neuroblastoma cell, 1 which is why the ch14.18 treatment is referred to as “immunotherapy.” 
• The “ch” in ch14.18 refers to the term “chimeric” and means that the antibody has been created from two different sources – in the case of ch14.18, mouse and human cells (25% mouse, 75% human). 
• ch14.18 is administered over 5 courses, approximately once per month over five months. It is given in conjunction with either GM-CSF or Interleuken-2 (IL-2), agents known as “cytokines” that work to stimulate the immune system once the ch14.18 attaches to any neuroblastoma cells. Each round of immunotherapy is followed by 2 weeks of Accutane treatment at home.
• GM-CSF is a daily shot that Hazel will receive with Cycles 1, 3 & 5.  These shots could make her experience things like: bone pain, feeling like she has the flu, tiredness and weakness and stomach upset.
•  IL-2 is a daily infusion she will receive for four days prior to and in conjunction with the Ch 14.18 infusions during Cycles 2 & 4.   
• Isotretinoin, which is usually referred to as “Accutane”, is derived from vitamin A. It encourages immature neuroblastoma cells to stop dividing and proliferating, and ultimately die.  Hazel will receive a two week course of Accutane following each cycle, and will receive one more two week course to serve at Cycle 6 of her Immunotherapy protocol.

     The most concerning part for us are the many side effects involved (so please pray specifically for these!!).  Unlike chemo, Hazel will finish each infusion and is expected to bounce back quickly and not have the long lasting side effects that would send us back to the hospital a week later (i.e. fever, infections, low blood counts, etc.).  That being said, DURING the infusions, she could experience quite a lot of misery.  Some of the likely side effects include:

• Pain (each child is started on a morphine drip before the infusion even starts, in order to try and stay ahead of the pain)
• Allergic Reactions
• Fever
• Constipation
• Nausea
• Blood Pressure Changes
• Fluid Retention
• High Heart Rate
• Flu like symptoms
• Fatigue
• Drop in platelet counts
• Possible affects to kidneys and liver (this worries me most due to the damage that has been done to these before during transplant)

     Here is what our inpatient schedule will look like (barring any complications) over the next several months:

• Cycle #1  2/9-2/14 or 15
• Cycle #2  3/2-3/7  Home for Saturday then back in 3/9-3/14 or 15
• Cycle #3  4/6-4/11 or 12
• Cycle #4  4/28-5/2 Home for Saturday then back in 5/4-5/9 or 10
• Cycle #5  6/1-6/6 or 7  **OUR VERY LAST INPATIENT STAY!!**
• Cycle #6  Accutane taken at home 7/7-7/20 **HOPEFULLY THE VERY LAST DAY OF TREATMENT!!

     If you have stuck with me this long, first let me say thank you!  Secondly, as you can see, these next several months will continue to be a challenge for our family and we will need a lot of prayers and support.  But it is also very exciting for us to say we are starting the very last phase of treatment and finally be able to see the light at the end of what has been a very dark tunnel.  We could not have gotten to this place without our God, our family and friends and all of you!!!

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: