Tuesday, April 19, 2016

Three Years Later...

     Today, April 19th, marks exactly three years since we discovered the tumor growing inside our little Hazelnut's body.  And this Friday is exactly 2 years since she first received, what we thought, were clear scans!  Of course, because of a suspicious spot found on her next scan, she would go on without being declared officially NED (No Evidence of Disease) until September 2015.  However, because this spot never changed during all that time, I truly believe in my heart that she has been cancer free since that April day in 2014!  So this is a very emotional and important week for our family, which is why I do not think it is an accident that her 22 month post treatment scans happened to get scheduled for this very week.  I hope and pray with all of my heart that we get to continue to celebrate victory when we get results next week.

    One thing I forgot to include in our post last week was that while Hazel has remained cancer free, cancer and it's subsequent treatment has left indelible marks on our family, but especially our daughter.  I have spoken before about the lasting side effects that treatment has had on Hazel, and we have been very fortunate that she has not suffered very many of them.  However, while at her last dental appointment, she was finally cleared to get her first set of X-Rays.  When the results came back, the dentist discovered her back teeth were full of cavities.  Hazel's teeth are very tight, so she was probably already at risk at developing cavities without proper hygiene, but the extent at which these teeth are affected can only be explained by chemo.  So next Friday, she will be sedated while they perform oral surgery to fill, crown or extract teeth as they see necessary.  It hurts my heart that she has to face, yet another sedation and medical procedure, but at the same time feel so blessed that my daughter is alive and she has been well!  

     Now as I sat down to begin writing this post to reflect on this time three years ago, I remembered the post I wrote when we first met this annual milestone, just one year after treatment.  I felt I could not write it any better than I did then, so I would like to just share it once again (with a few edits to reflect the time that has passed):

     Hazel and I spent this morning three years ago in a pediatrician's office, desperate for answers.  Hazel had been complaining of pain, had not been eating or drinking for several days, had spiked a relentless fever, had vomited and was falling asleep every few minutes.  God kept moving in me to trust my "Mommy Instincts" and not allow this matter to rest.  I remember, with tear-filled eyes, expressing to the doctor that I thought this may be cancer.  To this day, I don't know why that thought even entered my mind, given our complete lack of experience in the world of cancer; but in my heart of hearts, that was my deepest fear for my little girl who had just turned two years old.
A few weeks before diagnosis
     As Hazel lied there so lethargically, the Dr. observed terrible dehydration, an increased heart rate, and a tender and enlarged abdomen.  She believed it may have been something with the appendix and/or liver and wanted us to go over to the ER right away.  I tried calling Aaron about 15 times to tell him what was going on, but it wasn't until we were admitted that he got my messages and rushed from work to meet us.  I was absolutely terrified.  Once in the ER in Simi Valley, Hazel received IV fluids, and they did blood work and an Ultrasound of her abdomen.  
Laying on the gurney in the ER
She was so tired...

     When the radiologist and physician's assistant discussed the results, they informed us that there was a solid mass, the size of a lime (we found out later that it was in fact much, much bigger than a lime) growing inside her abdomen, but could not tell us anything else about it.  Aaron and I were extremely overwhelmed and begged God for the tumor to be benign.  I remember my body went into shock and everything became such a blur.  Then they called Children's Hospital, reserved our space and prepared us for transport.  We waited on that gurney for about four agonizing hours.  At this point, Hazel's fever was finally down and was much more hydrated, so the ambulance ride was actually great! She was constantly singing songs, waving to Daddy (who was following behind us in the car), and talking to the EMT's, who she referred to as Doctors :)  Leave it to a two-year-old precious little girl to take away the mental torment.  
     Once in the ER at Children's Hospital, it was another waiting game.  We arrived sometime around 7pm, which is when we met several nurses and doctors.  They told us they were going to review the scans to determine if they agree with the results or if they should run their own Ultrasound as well.  More blood was drawn, and more IV fluids were given.  Our family all traveled down to the hospital to be by our side, cry with and support us.  Hours later, the Doctors came in to inform us that they agreed with the results:  There is a mass inside her abdomen and there are two things they are most concerned about; a Wilm's tumor, or a Neuroblastoma.  They said we would be admitted upstairs to the oncology unit for more tests, specifically a CT scan. This was almost 1:00 in the morning.  It took several scans, tests, and a biopsy for it to be confirmed that Hazel was diagnosed with Stage 3, High-Risk Neuroblastoma.   
     At the time, having this all happen over the course of a single day seemed tremendously unfair.  However, in hindsight and with a year of experience under my belt, I realize we were unbelievably blessed by our Father to have it happen in this way.  Most families struggle for weeks or months to find a diagnosis, and by the time the Neuroblastoma is discovered, it has already spread throughout the body and is diagnosed at Stage 4.  I wholeheartedly believe that because God lead me to find answers, we were able to find her cancer soon enough that it did not spread and we could receive a Stage 3 diagnosis.  Had we waited even just a week more, it could have been a very different story.  I now know the kind of aggressive beast that Neuroblastoma is, so I am tremendously thankful we caught it when we did.  
This one verse kept coming up in those first few days, so I wrote it on the white board in Hazel's hospital room, and we were all clinging to it as we awaited the test results that would determine if her cancer had spread to her bone and bone marrow.  
     In the weeks following, we found out more than we would have ever wanted to about the world of childhood cancer and specifically about the monster we have to come to know as Neuroblastoma.  Hazel braved each test, treatment and hospital stay with a courage beyond belief.  We feared for our daughter's life and for the pain and suffering she would have to endure; but she remained a child, adapting to her surroundings, and finding to joy in every day.  We relied on the support of our family and friends, more than we would have ever imagined would be possible and without them, that would have been far too difficult for our little family to survive each day.  I don't think I can ever express fully the depth of our gratitude.  We have lost many friends along this journey, but we have gained many more new friends (other cancer families, the amazing nurses and doctors at CHLA and many supporters) who are now a part of our extended family, and I could never imagine our life without them.  

These are a few photos from those first 12 days back in April of last year:

Here is our beautiful, currently CANCER FREE daughter today:

Tuesday, April 12, 2016

Upcoming Events

      Wow!  I haven't posted since February!  I can tell you, though, that it has been because we have been busy planning some really awesome things coming up, but more on that later.  Our little Hazelnut is feeling better than ever!  She has grown so much these past few months, and I just look at her in such awe and thankfulness.  

     One of the greatest things we were able to do recently was the annual LAPD/LAFD St. Baldrick's Head Shaving event.  Our son Micah, and my cousin Blake, have shaved their head now for the past three years in honor of Hazel.  It has always been such a touching tribute, but this year in particular was the most heartwarming because Hazel got to shave both of their heads!  She had the time of her life!  While she took a break between shaves, she remained on stage because one of the shavers asked her if she wanted a braid in her hair.  I was finishing Micah's head and got to watch, as my once bald daughter, stood next to her bald by choice brother, with a head full of healthy hair getting a french braid done.  I cannot even begin to adequately put into words the swells of emotions that washed over me in that moment, and I am so thankful we got to have it.

     While we have truly been enjoying these last months, I have to unfortunately say that it is that time again for Hazel to have her scans.  I am especially anxious about these scans because it is our first time that we waited FOUR MONTHS instead of our usual THREE.  Neuroblastoma is such a sneaky, and extremely fast growing disease, so waiting longer to keep a watchful eye on it is especially unnerving.  She has one scan next week, and another scan the following week.  So we may not be able to update you with results until the first week of May!  Please keep our daughter in your prayers and thoughts these next few weeks!

Upcoming Fundraisers

     So onto some of the things that have been in the works and keeping us all busy!  As some of you may remember, our family has started a fundraising and awareness website called Hope With Hazel.  Rather than start our own non-profit, we decided that the childhood cancer community would benefit more if we came alongside other established organizations who are already doing so much good, and those that helped our family during Hazel's journey.  We have hosted one fundraiser so far, and now it is time for our next one!  And as a bonus, this fundraiser is 2-in-1!!  

    As our little Hazelnut is Children's Hospital Los Angeles' Pizza Girl, we thought it only appropriate to raise money for them by having a giant Pizza Fundraiser!  So we have joined up with NINE local California Pizza Kitchen locations to have 20% of their profits for all of May 5th be donated to Children's Hospital Los Angeles!  If you would like to attend, be sure to print out a copy of the flyer below.  Now not only are we going to be able to donate money to Children's Hospital Los Angeles, but we are also going to be collecting life-saving blood donations the very same day!  Did you know that one pint of your blood can save up to three children?!  Hazel received well over 70 different blood or platelet transfusions, so her life literally depending on people like YOU! We will be hosting the CHLA Blood Mobile in front of the Simi Valley location from 9:00am-2:30pm, and our family will be there, so we hope to see you!   

    We have a couple more INCREDIBLE things in the works, and once we solidify all the details, we will share it with you.  So keep watch for it!