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:

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!

First Update of 2016

OUR CANDY CANES FOR CANER FUNDRAISER FOR CHILDREN'S NEUROBLASTOMA CANCER FOUNDATION RAISED $2,225!!  

THANK YOU FOR YOUR SUPPORT!  

     Thank you all so much for continuing to check in on our little Hazelnut, and my apologies for being a bit "MIA".  The holiday season kept us very busy, but it was absolutely wonderful to have a truly "normal" Christmas. We just spent time with all of our family, and we had nothing out of the ordinary happen.  It was pretty miraculous, actually.  

     Also, as in my last post, our whole family has seemed to not be able to get out from under this flu season!  We have had the stomach flu 5 different times, countless colds, bronchitis, croup, ear aches, etc.... So to be honest, I have been pretty exhausted.  Life with 5 kids is already very busy, but add ceaseless illnesses, and one can't really catch a break! So when I sit down at night, after the kids are all asleep, my brain is in no condition to write a blog post!

     But, hello again!  I'm here! Hazel been feeling extremely well, and, if you remember, had very good scans back in December.  We met with her Oncologist last month to go over everything, and for the very first time, we actually heard the word NED (No Evidence of Disease).  Since April of last year, her medical team would say that they believed she more than likely was NED, but because of that spot on near her kidney, they could never officially say it.  But this time, even with the spot, the doctor felt that it had been long enough and felt much more confident in saying she believed our girl was free of this cancer!  In addition, the doctor's confidence led her to make the decision to move Hazel's scans from every three months to EVERY FOUR MONTHS!  This is such a big deal!  The farther we get from her diagnosis, the better chances she has at keeping this beast away for good.  So every step that takes us in that direction is such a victory!

     Also, we celebrated another victory in January...HAZEL'S 5th BIRTHDAY!!!!  When she was diagnosed, she was only 2 years old, and quite frankly, during this time, and once again when she was in the ICU, we were not sure if she was ever going to see another birthday.  But not only has she seen another birthday, but now she has seen 3!!  We feel so incredibly blessed to celebrate every moment with her and our other children, but these birthdays are extraordinarily special.  We celebrated with a trip to Disneyland with our family, and a Frozen Themed Tea Party with a few of her friends from preschool. Again, thank you all so much for your continued support for our family!  And be on the look out for some fundraising opportunities I will be posting about that are coming up! You can also visit www.hopewithhazel.com  for more info!

 

 

     

Giving Back

     The months of September, October and this first half of November were very busy for our family!  We took part in several childhood cancer awareness events, celebrated both of my son's birthdays (they both were born in October!) and my husband's birthday (early Novemeber), had two weekend trips out of town, and so much more.  Beyond the extra fun, there was also still the minutia of daily life with 5 children!  During all of this, Hazel has just been doing remarkably well!  Since her last set of scans, where her doctor finally felt comfortable to say she is NED, she has been enjoying the life of a very normal and enthusiastic 4 year old.  She absolutely LOVES school, dance class, craft time, helping me cook in the kitchen and taking part in her responsibilities in our family.  

     Another thing that has kept me busy is a project that our family has been working on, and I am thrilled to share it with all of you! Something that has remained constant for our family since Hazel's diagnosis, has been the desire to give back to the community who rallied around us for all of those months and to the many organizations who lovingly and effectively bring the much needed funds and awareness to Childhood Cancer.

     So we have launched a new website called "Hope With Hazel"! We hope to bring much needed awareness and support for the children who have fought/are currently fighting cancer, and to the childhood cancer community through fundraising events, awareness campaigns and by providing others with the tools and resources to do the same.  We aim to come along side other local and national non-profit organizations to aide them in their efforts toward the same goal. 

     When you visit our new website, you will see that our very first fundraiser has begun! This season we are raising money for The Children's Neuroblastoma Cancer Foundation.  To do this, we are selling these Childhood Cancer Candy Cane Ornaments.  For every ornament sold, we will also give one to a child to is inpatient at Children's Hospital Los Angeles at Christmas time. Currently our goal is 120 ornaments, and we have 90 left in stock (as of 11/14/15). We will be distributing these on a first come, first serve basis, so don't delay!  If we get a larger response and exceed our goal, our hope is to make more, and we will donate an ornament, for every ornament purchased, to a Pediatric Oncology Nurse!

     For more information, visit www.hopewithhazel.com, click on the "EVENTS" page and find out how you can make a donation!

September is Childhood Cancer Awareness Month

     We have so many opportunities to share with you in how you can help bring awareness for Childhood Cancer this month!  First, please feel free to use any of the following photos to post on all of your social media sites.  We need to turn the world gold!

     In addition to changing your social media sites to show your support, there are many other things you can do to help the cause.  Spread the word about the cause and share facts about childhood cancer on your social media sites; make a donation to a childhood cancer (I have a list in the tab above) charity or children's hospital; search www.change.org for any petitions to sign relating to childhood cancer; write to Congressional representatives urging them to join the Childhood Cancer Caucus and sponsor any legislation for the cause, or write to your state and local representatives about proclaiming September "Childhood Cancer Awareness Month" and to "Go Gold"; get your own children involved by hosting a fundraiser such as a bake sale, coin drive, lemonade stand or garage sale; partner with local school to hold "Go Gold" Spirit Days in conjunction with a fundraiser; and so much more!

 Nautica Malibu Triathlon

     The Nautica Malibu Triathlon, benefiting Children's Hospital Los Angles will happen the weekend of September 19 & 20.  You can participate in one of two ways: 1)Register for the event (There will also be a Nautica Kids Run and Tot Trot, so kids are welcome to!) at Nautica Malibu Triathlon and 2) You can donate to our dear friends the Andrade Family, who have formed the very first corporate team representing, and consisting of, the very families this triathlon aims to support called Sophia's Buddies. You have 18 days left to donate!

Blood Drives

Hope for Hazel Blood Drive

To celebrate Hazel being 1 year off treatment, and to kick off Childhood Cancer Awareness Month our family is hosting a blood drive at CBS Studios in Studio City, CA.  Come see a working TV/movie studio and celebrate, all while saving lives at the same time!

Host Your Own Blood Drive

Did you know that one blood donation can save up to 3 children?!  Hazel had over 70 different blood transfusions, each one she relied on to literally keep her alive.  So call your local Children's Hospital and organize a blood drive in honor of Childhood Cancer Awareness Month!

Shope Gold For A Cure

Search #shopgoldforacure on Instagram and find a plethora or Instagram, Etsy and other online shops who are donating most, if not all, of their proceeds to childhood cancer, and get some gold swag while you are at it!

Challenges

Pablove Foundation- Check out this AWESOME LIST that The Pablove Foundation created to guide you in how you can help during Childhood Cancer Awareness Month and what challenges they offer

Maxlove Project- The MaxLove Project is a nonprofit organization helping SuperKids thrive against the odds with integrative medicine and 100% LOVE") is hosting their annual #HonestLovesMax event.

For each use of the hashtag #HonestLovesMax in the month of September The Honest Company (www.honest.com) will donate $1 (goal $30,000) to MaxLove Project for innovative quality of life care projects, including the development of an empowering book for SuperKids.

Twitter – Use #HonestLovesMax hashtag, RTs count.

Sample Tweet:

"It's Childhood Cancer Awareness month, and @Honest is giving to @maxloveproject! Every tweet with #HonestLovesMax = $1 so RETWEET!"

Facebook and Instagram -- use the app located athttp://honestlovesmax.com/ as of Thurs, 9/3

#Just Keep Dancing- Ellen DeGeneres from The Ellen DeGeneres Show has requested that we follow her in creating dancing videos to raise awareness for pediatric cancer. She was inspired by Braylon Beam who dances to help him with his battle with brain cancer. Ellen is asking that we post our videos with the hashtag ‪#‎JustKeepDancing‬ and ask others to join in and make this the new Ice Bucket Challenge and donate to childhood cancer research.

Empire Go Gold & World Go Gold Campains- #EmpireGoGold #WolrdGoGold Recently there has been a movement across the nation for landmarks and well known buildings to "light up" gold for Childhood Cancer Awareness Month.  Unfortunately, the Empire State Building has refused time and time again, even after lighting up for Teenage Mutant Ninja Turtles, The US Open and in a bid for the Democratic National Convention.  This campaign's goal is to not only have the Empire State Building turn gold, but also the whole world! Head on over to the Facebook page to see how you can help turn the world gold!

Summertime!

      Our family has had two years of very unusual summers. Summer of 2013 was filled with heartache, treatments, and many separations for our family. Summer of 2014 our little Hazelnut was just wrapping up treatment, and we also had a brand new baby.  Although filled with much more joy than the previous year, we were still overwhelmed by having to adjust to another new phase of life.  We also were still struggling to navigate those first few months after treatment. Months filled with joy, sadness, fear, anxiety and so much more. 

     So as we approached Summer of 2015, I definitely wanted to make up for lost time!  Therefore, I packed our summer full of activities and experiences that not only Hazel, but the whole family missed out on the past two years (which clearly explains my absence from the blog).  Instead of telling you all about it, I will let the pictures speak for themselves; but before I do, let me just update you on how Hazel has been doing.

SHE HAS BEEN FEELING EXTRAORDINARY!!!  

Her hair has grown out to a normal length, and we have even been braiding it!

She has gained her weight back, and I see her toddler belly again!

Her leg that was once extremely weak, is the same strength as her other leg!

She dances, sings and plays like a healthy little girl!

It appears as though cancer never touched our beautiful daughter…

     That being said, cancer is a stubborn beast, and it still touches our family each and every day.  We see it in Hazel's, and our whole family's level of PTSD.  We see it in the many children we know and follow around the world.  We see it on the scar that stretches across our daughter's belly.  We saw it this summer when Hazel had to have two suspicious moles removed, with one coming back with "abnormal cells" (cells that could later in life turn into cancer, so we went back to remove more and receive clear margins).  We saw it when I had to have an ultrasound of my right breast due to an abnormal mass (praise God it turned out to be nothing).  We see it at each doctor visit, scan, blood draw and check up.  We see this beast each and every single day.  So continue to pray for us as we live a life that will never be free of cancer, but also to be reminded that we have an AWESOME GOD who carried us through our journey and works all things together for His glory.

     Now onto the pictures!

     The following pictures were taken at my brother's wedding, where all of my children got to participate!  Hazel was one of the flower girls!

     Hazel's little sister Zoey celebrated her first birthday!  On a side note: If you do not remember, Zoey has had some issues at the base of her spine and has undergone numerous tests since October 2014.  I am please to report, that all tests continue to come back clear of issues and we will just continue to monitor her with yearly scans with a Neurosurgeon (I know, I know….more scans! Ugh! But at least she is healthy!)

     Last, but certainly not least, Hazel reached a milestone that, for many months, we feared she would not reach: She began Preschool last Tuesday!!

Sign has been blurred for safety

     As if this day wasn't exciting enough, Hazel lost her very first tooth the same day!!

     Thank you all for your patience with my missing posts this summer, and for your continues support.  Be on the look out for a post in the next few days for Childhood Cancer Awareness Month, our family has some great things planned!