Monday, April 28, 2014

Emotional Roller Coaster

     I would like to take a moment to express our gratitude for how many of you rejoiced with our family last week when we received the wonderful news that Our Little Hazelnut is currently cancer free.  It is a wondrous thing to behold when we see the army of supporters who are behind us; joining in our sorrows and in our triumphs.  And to have seen all of ours and your prayers being answered in such an incredible way was absolutely miraculous!  Since receiving the news, our family has of course been celebrating and treasuring each moment we have together.  However, it has been a bit of an emotional roller coaster for Aaron and myself.  Many people, myself included, have always seen a "Cancer Free" declaration as a final step into victory.  Although it is certainly a victory for Hazel and our family, it is just the first in what we hope will be a very long line of victories over the next few years.  The reality of childhood cancer does not just disappear with this news, and Hazel still faces two very grueling inpatient treatments and many years of hear-wrenching scans.  In addition, Hazel's particular type of cancer (High-Risk Neuroblastoma) has a relapse rate of anywhere between 35-60%, and currently, there is no known cure for relapsing/refractory Neuroblastoma.  There have been many improvements in treatment in recent years that look very promising, and many children beat this monster for second, third and even seventh times.  So Aaron and I have realized and grappled with these truths, and have only been able to take a shallow, not deep, sigh of relief.  The next five years for Hazel are absolutely critical because this is the window that Neuroblastoma likes to show its face again, which is why she continues on with scans and tests for so long.  But once past that five-year mark, chances of relapse almost diminish and scans discontinue.  Another thing that we may also have to face are late-effects from her treatment.  Common late effects include, but are not limited to, learning issues, vision problems, hearing loss, growth and developmental delays, developmental problems, seizures, headaches and loss of function in certain organs.  So clearly, our battle is not yet over, and we will continue to rely on God's plans and promises and your prayers and support to get us through.  We know, and have seen that our God is a God of Miracles; and I whole-heartedly believe that all of these statistics mean NOTHING to Him!  We need to cling to these truths:

  • Deuteronomy 31:8  "The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
  • Romans 15:13  "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
  • Isaiah 40:31  "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

     As for now, Hazel and I just checked in at Children's Hospital Los Angeles for Cycle #4 of Immunotherapy.  This will be the same infusion as Cycle #2, where she will receive IL2 for four days, we return home for the weekend and come back Sunday evening to begin the infusion of IL2 & Chimeric combined for five additional days.  As many of you may remember, Hazel had a very difficult time with Cycle #2, so much so, that they even had to turn off the infusion of the IL2.  For this reason, her medical team has decided to run the IL2 at 50% it's normal amount/rate in the hopes that her kidneys do not take such an excruciating hit again.  So please pray that these next two weeks go much better than the last ones and that we may be reminded that He continues to have our little Hazelnut in His loving and healing hands!

Tuesday, April 22, 2014

Results Are In....

     All of our little Hazelnut's scan an test results are in and....

     We spent our Easter weekend being thankful for the gift of new life through Jesus' ultimate sacrifice on the cross, and now we have experienced that gift in such another remarkable and tangible way.  God has blessed our daughter with a body free of the beast we call Neuroblastoma!  Thank you for your continued prayers and support as we awaited this news!!  

Saturday, April 19, 2014

One Year Later...

     Today, April 19th, marks exactly one year since we discovered the tumor growing inside our little Hazelnut's body.  Hazel and I spent this morning last year 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 have relied on the support of our family and friends, more than we would have ever imagined would be possible and without them, this year 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.  If my calculations are correct, Hazel and I (with a few days of relief for me given by Aaron & other family members) spent 200 out of the last 365 days away from our family.  We have adjusted to a new home in the hospital, and a new reality that we pray and we pray and we pray we do not ever have to face again!  So please continue to keep our little Hazelnut in your prayers and that God will rid her body of this deadly disease.  We hope for a year of change ahead and one where we can have some time to breathe.

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

Sunday, April 13, 2014


     Thank you from the bottom of my heart for your prayers, thoughts and support this week, because they have moved mountains!!  Cycle #1 (which is the same as Cycle #3) proved extremely difficult for our little Hazelnut; filled with cries of "I want to go home!" and "All done!", swelling, hives, extreme discomfort, disinterest and grumpiness beyond belief.  So mentally, physically and emotionally I prepared for another week of sleepless nights, agonizing days and watching my daughter suffer through something we willingly put her through.  However, God, once again has proven how faithful He is.  Despite some slight discomfort, redness, itchiness and moodiness Hazel seemed to almost breeze through this week!  She ate about one-and-a-half meals each day (instead of not eating or drinking at all, per usual), she smiled and laughed, played with toys and play dough, sang songs, listened to music and we read tons of books.  Additionally, each night after the Chimeric finished, she got out of bed to go for a walk!  Comparatively, this week was an absolute miracle! 

     We arrived home on Friday afternoon and she felt well enough, right from the get-go, to play with her siblings.  Usually it takes about a week for her to recover fully, but it was as if this cycle didn't even happen.  We have all been enjoying being home and the beautiful weather we have been having in Southern California.  

     Now this coming week is an EXTREMELY important week for our little Hazelnut.  It is disease assessment week, which means she will have a full work up of tests and scans to determine the status of her Neuroblastoma.  As many of you may remember, we got so very close to the NED (No Evidence of Disease) result that we have been praying for, but there was a spot on the kidney that was indeterminate.  This week could very well be a very BIG week for our family.  It is quite possible that Hazel is cancer free, and we ask for all of you to be praying for that!!  However, with Neuroblastoma, it is also quite possible that her disease was resistant to Immunotherapy and maybe began to grow back.  So, suffice it to say, we are all quite anxious and trying our very best to put our trust in the Ultimate Healer who has carried us through this whole journey.  I am not sure when we will get results, but for all of our sakes I hope it is quick!

Tuesday, April 1, 2014

Busy, Busy, Busy!

     These last few weeks have been overwhelmingly busy for our family.  But unlike what our life has been like for the past year; filled with stress from life-threatening side-effects, hospital visits, medications, time apart, etc., these weeks have been filled with much more "normal" things.  We have been going through normal day-to-day life of a family with four young children and a pregnant mommy (which is busy all on its own!), all while packing up our entire house and making arrangements to close escrow tomorrow!  So suffice it to say, life has kept us extremely busy; but in a much more normal and welcome way, and for that I am so thankful!  We also took part in several wonderful fundraising event, and I will share about them, with lots of pictures, in the next post!
     Our little Hazelnut has been feeling well, but is quite a bit more tired after this last cycle of Immunotherpay than she was after the first one.  I also think the two-times daily dose of Accutane is beginning to take its toll on her little body.  Amazingly enough though, she has still been enjoying her life as a normal 3-year-old to the fullest.  She has LOVED being home for this long and keeps saying things like "I'm so happy" and "I feel good, and healthy, and strong!".  It truly blows my mind to hear these things come out of her mouth, because it makes me see how much she truly understands of her situation and how remarkably well she has adapted to it and taken it in stride.  In addition, we have received a couple pieces of good news!  Hazel had her GFR test (kidney function test) to determine if the last cycle of Immunotherapy caused any irreparable harm.  Those results came back only a little low, but still within normal range!  The doctors believe we can still proceed with treatment as planned, but just quite a bit more cautiously.  Also, as some of you may possibly remember, we requested last June(!) to have Hazel's tumor sent away for genetic testing to determine if she has a case of hereditary Neuroblastoma. This is because on my father's side of the family, there are two family members who also had this same disease around 40 years ago.  To even have one other case is an extreme rarity, so to find out that we have two is alarming.  In children with Neuroblastoma, only about 1-2% have this genetic component, so our hope and our prayer is that Hazel is NOT among those select few, and it has killed me to wait this long for an answer.  While we do not have the answer yet, we found out today that after all the red tape has been broken, her tumor has finally been sent away and we should have results in a few weeks!!  So please be praying for these results!
     Hazel and I check in for Cycle #3 of Immunotherapy Sunday night.  This cycle only is composed of Chimeric, so although not easy, it will be better than the last cycle and will only be about one week of inpatient stay.  If all goes smoothly, we should head back home on Friday.  Please pray for minimal side effects and for strength and stamina to handle what is to come.