PET/CT Results

I honestly, in my heart of hearts, never thought I would be writing this post.  I truly believed that our little Hazelnut would forever remain cancer free.  However, the results from the PET/CT on Friday have told us otherwise:

OUR DAUGHTER, ONCE AGAIN, HAS CANCER

Even just typing those words seems totally and utterly unreal. But like so many other families who hear this news, it is most unfortunately real.

We hoped that these scans would be inconclusive as the others were, and that the biopsy next week would find nothing, but these scans were very obvious.  Not only did the spot in question surely light up, but they also found another spot on a lymph node in her neck, which confirmed what we all feared, that this is indeed cancer.

The doctor is quite certain that it is RELAPSED NEUROBLASTOMA, but there is a very small possibility that it could be a secondary cancer from treatment.  So we will continue with the biopsy as planned so we may confirm what cancer we are dealing with.  Initially it was planned for Monday, then it was moved to Tuesday.  This ripped me apart for two reasons.  The first is that Tuesday is my 30th birthday, and I did not want to receive the worst news of my life on that day (which has now already happened, so that is no longer a concern). Second, Tuesday is my son, and Hazel's younger brother, Jonah's very first day of preschool. When Hazel was first diagnosed, Jonah was only 5 months old.  Aaron, and especially I, missed so much of his early childhood and it absolutely broke our hearts.  To think we would miss yet another milestone just felt like being kicked while we were down.  I just HATE how much cancer takes away.  Thankfully, after consulting with the surgeon doing her biopsy, he heard my heart and moved our appointment back to Monday with no hesitation! 

The results from this biopsy should take a couple of days now, and once we get them, we can move forward with a treatment plan.  Tentatively, she will begin treatment on Tuesday August 30th.  If it is in fact Neuroblastoma, we will first move forward with a treatment option that is proving to be much more successful than anything ever has in the past.  It is chemotherapy paired with immunotherapy.  From what we understand, the type of chemo she will receive will be less harsh on her little body, so she may be able to resume some "normal" activities between treatments, which will be on a three week cycle.  We also need to decide whether to place a central line or a port in her body to administer treatment, either one most likely being placed on Monday the 29th.  Her treatment will require two access points, which is easily done with a central line that has two tubes attached to it already.  A port is only one access point, so she would require an IV to be placed every time she would go into treatment.  Initially our though was to, of course, choose the central line.  Hazel has such overwhelming anxiety about needles, and a port requires a needle access, and then she would also have another needle with the IV placement.  However, we also know how much she adores swimming and taking a bath.  A central line will never allow that, and a port would allow for everything.  With relapse, there is also no treatment plan, so there is no way of knowing how long it will be.  It could be years.  Would we want to take swimming and bathing away from her for that long?! A central line requires constant care, supervision and protection.  It could be caught on something, broken, pulled or have an infection introduced.  It also requires painful dressing changes once a week.  A port does not require nearly as much.  But, again, is it worth absolutely traumatizing her every three weeks for treatment and for the lab draws in between?!  How can you choose between two bad options for your beautiful little daughter?!  This is something that will take prayerful consideration, and also will be including Hazel's opinions.

Obviously this news has been overwhelmingly difficult for our family to digest.  We had to tell our family, and of course Hazel and our children.  These conversations were certainly very difficult, but God has been so faithful in granting our children strength and peace, that it has just amazed me.  I will not say, however, that these past two days have not been without tears, questions, thoughts and fears.  It has been hard on them, and on us.  I think though, that I will share these conversations in another post, because I will be asking for so many specific ways you can be praying for and supporting us, that it will not be beneficial to do it now.  I will say, however, that Hazel is doing well.  She feels good, and has taken this news in her stride and has said, "God healed me before, and He is my hero!  He can do it again!  And I am going to beat it again!"

For now, please pray that we can digest and cope with this news and begin to, somehow, organize our life and community around us so that we can move forward the best way we can.  We will be detailing the ways you can help our family soon, so please be on the lookout.  Thank you all for your continued support and prayers these past few days.  We felt so loved and cared for, and it helped beyond measure.

Hazel lost her second front tooth the morning of the scan, and was so excited to share it with all of you.

Scan Results

     While I had a plan for what this update would look like, cancer had other ones.  And if there is anything I have learned about childhood cancer, is that you can never really have plans and that you should always prepare for the unexpected.  

     In our case, the unexpected is that our little Hazelnut's scan results were not  the usual NED (No Evidence of Disease) that we have enjoyed these last months.  As you may remember, she received two different sets of scans; and MRI and an MIBG (a scan that specifically lights up when Neuroblastoma cells are forming in your body. Her MRI was Monday and her MIBG was Friday.  On Thursday, we were informed by the doctor that the MRI detected a new growth in and around Hazel's previous tumor and surgical site.  What that new growth is, they were not sure, but there was significant reason to be very concerned.  This made her MIBG results all the more meaningful.  If it was to light up, then it would be certain that our little Hazelnut would be relapsing; and if not, then she would have to receive more testing to continue to rule it out and to figure out what we would be dealing with.

     On Friday, we actually met with the doctor to go over results, directly following the scan, instead of waiting until Monday.  These results we actually INCONCLUSIVE.  Typically with Neuroblastoma, and also when Hazel was in treatment, there is no mistake when active Neuroblastoma cells light up.  With this most recent scan, the area in question did not most certainly light up, but the radiologist did detect something.  This something would be an incredibly small light indicating disease, OR it could just be the normal light that shows up when there is uptake of the radioactive material that is being filtered through her liver, kidneys and colon, all of which are close to this new growth.

    Since these results did not give us any new information, further testing is needed.  Hazel will receive a third, and different scan, called a PET/CT, that will hopefully give us some more clarity.  This will be done this Friday, August 19, in the morning.  Then she will also have a biopsy performed the following Monday, August 22nd.  When she was first diagnosed, her biopsy had to be performed with a surgery, leaving her with a lifelong scar.  This biopsy, however can possibly be done in an outpatient procedure, using a small needle.  It is appearing more and more likely, that the surgery will not have to be done, which, of course, would be the most ideal.  But we also want to make sure that we are getting the best and and most clear results as possible, so this decision is not being made lightly.  We should know which procedure will be done by the end of the week.  Lastly, while getting the biopsy of this new growth, she will also have a bone marrow biopsy performed.  Neuroblastoma likes to hide in and infect the marrow, so this test is always standard when looking for Neuroblastoma.  If all of these result in a positive diagnosis, Hazel would begin a treatment protocol immediately.  This would most definitely include chemotherapy, and would possibly include radiation, immunotherapy, and other medications currently administered on a clinical trial basis.

      Understandably, our family has been reeling from and overwhelmed by this news.  We had so much hope, that cancer would not touch our daughter again, but as in the case of many children, here we are, fearing the worst.  This is why we have continued to fight so hard for childhood cancer long after Hazel's treatment was finished.  We know that relapse was a a possibility for our daughter and is a reality for so many families.  Research money is just not enough.  Awareness is just not enough. And the priority that our fighting children are is certainly not high enough!  Our upcoming fundraiser for childhood cancer awareness month, The Ever After Ball, benefiting the St. Baldrick's Foundation, has now become all the more important. For more information about tickets and sponsorships go to www.stbaldricks.org/everafterball  These results have most certainly reminded us that research funding is so important in the lives of these children, and we will continue our fight even more determined than before.

     We have decided to not inform Hazel, and our other children about these results.  They are all to start school this Wednesday, and Hazel has been extremely excited all summer about her very first day of Kindergarten, so we do not want to worry the kids until we have to.  In that vein, we also decided to take the past two days to stay at a hotel near Disneyland and spend sometime with some magic as a family.  So while we asking all of you to stand with us in prayer, good thoughts, and support; we also ask that if you see our children, to not mention what you know.  

     Additionally, we do have some good news to report, that works in Hazel's favor no matter the outcome of these upcoming tests:

• Hazel has been feeling tremendously well and is, honestly, stronger than she has ever been.  This is a good indicator about the level of possible disease in her body, and also will support her if she has to begin treatment.
• Her blood counts are all NORMAL!
• Typically, a first indicator of disease in Neuroblastoma patients, are elevated catecholamines found in urine; and Hazel's are all within normal range!!
• Her first tumor was sent for genetic testing, and it actually had something called and ALK Mutation.  Currently, there is targeted therapy for relapsed patients that have NB and it is proving to be pretty successful!
• And lastly, just as we saw during her first arduous treatment protocol, our God and Healer has our daughter in the palm of His hand.  He tells us in JOHN 16:33- "I have told you these things, so that in Me you may have peace. In this world, you will have trouble. But take heart!  I have overcome the world!"

     We will of course continue to update you all as we receive results, but in the meantime, please pray for these results!  Pray for our family as we navigate these next couple of weeks with testing and school starting.  Pray for our children's hearts to be protected with peace and understanding and to be prepared if the news is not what we desire.  Also, please be praying for our children, because while driving down to Disneyland, they all showed signs of a possible cold; and while sleeping at the hotel last night, they have all developed into colds.  They all, but Hazel especially, deserve to have their first day of school, and I would be heartbroken if they would have to miss it, all things considered.  Thank you all for your continued support, and please know that it has always meant the world to our family.

Some Great News

     Thank you all for your continued support and inquiries into how our little Hazelnut is doing. I am happy to report, she continues to thrive!  She is growing like a weed and just recently completed Preschool!  I truly cannot believe that she will be in Kindergarten this fall.  To think, she started her journey when she was just two years old; boy has she come far and has God blessed our family.  We also recently had an incredible conversation with Hazel's oncologist.  Something I have continued to wonder about is how long Hazel has actually been NED (No Evidence of Disease). She received her first set of clear scans in April of 2014, but then we had about a year and a half of scans where they were concerned about a suspicious spot on her kidney.  Then, after monitoring it, and noticing no change, they once again declared her NED in December 2015.  So my question has remained, "Has Hazel been cancer free this whole time, or only since this past December?".  Well, her doctor finally put my mind at rest because she informed me that it is her opinion the Hazel has been NED since that first scan in April 2014!  This means that our daughter, Stage 3 High-Risk Neuroblastoma fighter, who almost lost her life from treatment, who could not walk or talk for months, and had one of the most difficult treatment regimens, is now more than 2 YEARS NED!!!!!  The doctor also said how optimistic she is for Hazel prognosis and just stopped short of saying that she has no concerns for her!  

At her Pre-K Graduation

     On top of Hazel's great news, we also have some amazing news with our fundraising efforts. For the past 7 months we have been working on an event that we plan to host in September for Childhood Cancer Awareness Month benefiting The St. Baldrick's Foundation.  Through some amazing divine intervention, and hard work, we are proud to announce that we will now be co-hosting an official  St. Baldrick's event!  It is called the "Ever After Ball", because every child deserves a happily ever after. Below is a copy of our Save The Date.  We also have two opportunities to donate toward our event: EVENT SPONSORSHIPS and AUCTION ITEMS.  If you, or anyone you know would be interested in attending, becoming a sponsor, or donating items for our auctions, please email me at hopewithhazel@gmail.com.  Also, check my fundraising and awareness site Hope With Hazel, for more updates!

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!