Tuesday, April 21, 2015

2 Years Later...

     Today, April 21st, marks exactly two years since we were told the absolute devastating news that our little Hazelnut had Stage 3 High Risk Neuroblastoma, and only a few days prior, on April 19th 2013, we had just discovered the tumor growing inside of her little body.  It is difficult to put into words the feelings I have on these days, but I looked back at my post from the 1 year mark, and I really liked what it said, so I would like to echo it again here.  It went as follows (with a few minor changes):

    On April 19th, two years ago, Hazel and I spent the morning 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, and more the size of a melon) 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 several years 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 have relied on the support of our family and friends, more than we would have ever imagined would be possible and without them, these past years would have made it 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.

Here are are few more pictures for those first few days in the hospital:

     Now here we are, two years later, and quite frankly, this date has snuck up on me.  Hazel has been feeling tremendously well and has, mostly, been behaving much like a normal 4 year old, without even a hint of her difficult history.  We have been out of the hospital for 10 months now and with that, her cancer has not been repeatedly tearing our family apart, so it was easy for me to not be in the same mind space that I was in last year when remembering this date.  In fact, without this constant threat, much of the two years of her treatment has blended together and even become foggy in my mind.  We have been able to rest in the peace that our Father has given us and have reconnected together as a "normal" family.  Our time together does not revolve around treatment, side effects, medications, germ eradication, but instead has been revolving around new life in our youngest daughter, play dates, family outings, homework, home cooked meals and all of the day to day things many take for granted.

     Most of me is extremely thankful for being in this place, but another part of me contains these other feelings.  Feelings of guilt for forgetting things, for not being there for the other families fighting, for even slightly losing the amazing perspective on life that the journey gives you when you are neck-high in it; feelings of sadness that I am losing some memories to time, and that we are no longer around the family we created with the nurses, doctors, medical staff and other families at CHLA; and especially feelings of fear that I may grow complacent, that I will unintentionally and gradually remove myself from this world because it is the easier thing to do and, most of all fear that this beast will come back to harm my daughter and my family once again!  Those feelings of fear are the ones that haunt us the most, and of course rear their ugly heads the most every three months at scan time.  So we still pray and we pray and we pray that these same days that we had two years ago, will never again be repeated!


  1. Always in our prayers...Your family is so beautiful and I pray that things continue to stay cancer free.

  2. beautiful Hazel! God bless your family

  3. I don't know you but think of you often and check for updates. I have a 4 year old of my own who is, thankfully, healthy, but as a mom I have wept with you. I feel like your little (big) family is a part of me now because I have been changed by your fight, by Hazel's fight, and by your strength. It's ok to get back to "normal" and to try to forget those awful days. It doesn't change how you feel about those who helped or those who are still fighting. It is in honor to those who are fighting that you and Hazel are LIVING. Do not waste a second on guilty feelings. Trust that your story has touched enough people that there are now so many more people fighting the fight than there were before. You've raised awareness and allowed strangers to feel your happiness, your sorrow, your fear, your love....

  4. Reading that: awesome. I'm so unbelievably happy Hazel lived and is thriving (I've known too many families who lost children far far too young). My hat is off to both you and your husband. That is a ROUGH road to go down, probably rougher than I myself could go down.

    So, hat off.

  5. I came across your blog a month or so ago and I have found so much hope and inspiration from you. You are an amazing mother, woman of God and blogger. Thank you for sharing your story with us and for being so faithful in your journey. Your family is beautiful. My daughter was diagnosed a year ago this month with Stage 4 Neuroblastoma and we are getting ready to start antibody therapy, thank you so much for sharing your sweetheart's story, it has given me hope... obviously hard to read about your daughter going through what she has, it makes my heart for you and for all of us having to watch our children go through this. My daughter too had a very difficult time during transplant and we are extra anxious about Antibody therapy. I know you are a very busy Mommy but if you ever wanted to chat I would love that... my email is amandabrenden@yahoo.com. I actually borrowed your excerpt about antibody therapy for my blog, I wanted to ask if that was ok but didn't know the best way to do that... I so hope that it was ok for me to borrow that... it was the part from CNCF. You write so nicely, thank YOU. I am so thankful I came across your blog. Sincerely, Amanda

  6. Ack, you explained perfectly how Ive been feeling. I don't know if you remember me, but my daughter had neuroblastoma, diagnosed June 2012 at 18 months. She was stage three high risk as well. We have been soaking up normal. Its been amazing. The fear of relapse will always be in the back of my mind, but everyday that passes, it gets less scary. Im so happy that Hazel is doing so awesome!!

  7. I am happy to see that Hazel is doing well. May G-d keep Hazel and her family safe.