1 Year Post Treatment Scans

     I had a completely different post planned for today where I would update you on how our little Hazelnut has been doing, but I will save that for tomorrow because instead I would like to take a moment to ask for your thoughts and prayers once again.  As many of you may have seen on Hazel's Facebook page, our very sweet little friend Bailey, who we met through CHLA and has been fighting Stage 4 Neuroblastoma, received the most heartbreaking news yesterday that her cancer is continuing to spread throughout her body despite the aggressive treatments she has been undergoing and was sent home on hospice care to live her remaining days with her family.  My heart is literally in pieces and I BEG for your prayers and support for the Haney family.  First, pray for a MIRACLE!!  However, if God chooses to bring her home to a place of ZERO suffering, please pray that Bailey's journey from this life to the next be one that is pain-free and peaceful; that her mother, father and 3.5 year old brother will be given a peace that surpasses all understanding and that they can hold onto one another as they cling to His promises during this time.

     This news is especially difficult for me to process for a thousand different reasons, but probably the most pressing and burdensome issue is that this news comes on the eve of Hazel's 1-year post treatment scans.  We are heading down to the hospital today for the radioactive iodine injection, she will be scanned tomorrow morning, and then we meet with her oncologist Monday morning for results.  

     We have seen so many of our friends with the same disease relapse, and many take their last breaths here on earth, so my heart is heavy and fearful as we face these next few days.  I am thankful for God's healing of my daughter, and now more than ever ask Him for His continued healing.  

     Please also pray for the condition of the hearts and souls of all parents of children fighting this terrible and, many times, insidious disease.  Those still in treatment much watch as their child battles for their life, not only against Cancer but against the side effects of many outdated and toxic treatments. Those with children like Hazel, who have fought and won, live everyday with an overwhelming sense of relief and thankfulness, that is also coupled with survivorship guilt, anger that others are suffering and extreme fear that your child may suffer again. And of course those who have or are currently about to face the loss of their child. Their hearts are ripped in ways that most people cannot even fathom. 

Childhood Cancer is not rare.

It does not discriminate.

It's is not fair.

It is ruthless.

It needs our awareness and support.

It needs a cure!!

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!

Scan Results

     For those of you who may not have been aware, our little Hazelnut's scans got rescheduled to this past Thursday.  These particular scans were extremely nerve-wracking for our family because we were paying attention to a spot that her doctor referred to "residual disease".  If there was any growth at all, then Hazel would have to begin some sort of treatment once again.  So our hopes and prayers were that this spot would either completely disappear or remain stable.

     Her doctor called me yesterday evening with the results.  He said that the scan revealed that the spot was still there, but it actually looked a bit fainter this time!!!!!!!!!!!!  He said this may have just been the way the scan picked it up and maybe next time it may look back to what it was before, but the point is that is has remained completely stable!!  This means that this residual disease is more than likely not active, but we will always have to keep an extremely close eye on it.

     Although we are overjoyed with this news, her doctor was very clear in saying that he cannot declare her NED or cancer-free, so unfortunately we can no longer claim that for our daughter.  But for our purposes, I will celebrate the fact that our little Hazelnut has been 11 months with stable and not active residual disease and I will take that as a victory!  Our God has held her in His hands through her whole journey, and today is no different.  So I will continue to rest in the fact that HE HAS GOT THIS!!!

Is Surgery Necessary?

  Oh my, I cannot believe I forgot to update you all after our meeting with the surgeon!  I am so sorry!  Our meeting with Dr. Bliss (Hazel's surgeon) went well, and he concluded that we should NOT proceed with surgery of any kind at this moment.  He did not, however, make this decision lightly.  With Neuroblastoma, any spot on a scan is something that needs to be taken very seriously, so of course our inclination is to get in there to see what it is and possibly take it out.  But before doing that, the risks must be weighed.  So, Dr. Bliss met with a large group of surgeons and showed them her scans.  As a team they determined surgery to be far too risky for several reasons.  

     First, she would almost definitely lose her kidney if surgery was performed, and unless we are absolutely certain that this spot is cancerous and life-threatening (thus making losing the kidney imperative), then it is not worth it at this point in time.  

     Second, they all agreed with Hazel's oncologist and medical team that since this spot has remained unchanged for at least 9 months, it becomes less likely that this is active disease.  

     Lastly, Dr. Bliss informed us that this spot is completely involved with Hazel's Inferior Vena Cava.  This is a very large vein that carries deoxygenated blood from the lower half of the body back up to the heart (see picture below).  If this vein is damaged, it is very likely that a person will not survive due to too much blood loss, and that is not something Dr. Bliss, nor we, want for Hazel.

     So, for now, we continue to wait.  Her next scan is scheduled for March 25th, which we will pray for it not only to be unchanged, but for it to be clear!  My hopes are high because each day Hazel seems to be getting stronger, healthier and happier!

     On an unrelated note, our family has made the decision to close Hazel's PO Box.  We thank you all for the wonderful cards, letters and gifts sent to her; we will cherish them always.  If you would like to continue to show your support, please consider sending cards to other children still in treatment, or donate to one of the many childhood cancer organizations I have listed on the blog!

Meeting with the Doctors

     So I received the phone call from Hazel's medical team late yesterday afternoon, and here is what I know so far: First, the surgeon was actually out of town and can't look at her scan until we see him in clinic. So we are not are what his thoughts are yet, but I made an appointment for Wednesday, so we Wil get some answers then. Second, the rest of the team was all in agreement with her main oncogist, that since this spot has remained completely stable for nine months and all of her labs came back normal, that we should NOT start any treatment right away and that we may be safe just monitoring it with follow up scans. They all hope the surgeon can biopsy/remove this tissue so we can have some concrete answers, but if it will be too risky, we will wait until her next scans with this new machine (which are set for 10 weeks from now instead of 3 months) to see if there has been any change. If there has been, then we can discuss possible treatment, but if not, we will continue monitoring it. So even though we still have more information we are waiting on, I still consider this another small victory! They could have just as easily said we needed to start treatment right away, so thank goodness that was not the consensus! 

Urine Test Results

Our little Hazelnut's results came back normal!! Praise God for good news and please pray for similar news on Friday!

Life After Treatment

     Allow me to begin by saying thank you to each and every one of you for all of your kind messages and inquiries about our little Hazelnut.  It has, and never will go unnoticed by our humble little family and I wish to tell you that your support and prayers continue to be palpable and extremely meaningful to us.  As for Hazel, she has been feeling very well!  She is growing like a weed, putting on weight and we see new hair every day.  Her holidays were spent with family and were wonderfully normal.  

     As for her baby sister Zoey, we still do not have any conclusive information regarding her spinal concerns.  The most recent appointments have given us this:  we have ruled out many issues, but the MRI done on her spine still shows excess fluid that should not be there.  Based on her meeting all of her milestones, and not being symptomatic, the neurosurgeon believes she is more than likely perfectly fine.  However, this excess fluid is still something awry, so he wants to continue to run more and more tests to rule things out.  She had an MRI of her brain done yesterday, and will not be able to see the doctor to discuss the results until February 2nd (unless something emergent appears).  We also have an appointment to see a urologist in February, so please pray for more clarity!

     As for me, it has been a peculiar couple of months.  Certainly I have been savoring every single moment with my daughter and my family, but I have been struggling with a lot of stress, anxiety and emotions that I did not anticipate facing after treatment.  I'm sure my hormones from having a baby/nursing have not helped either ;)  I would like to share with you all what I have been going through for several reasons.  One, is I have realized that coping alone is not the answer and the prayers and support from all of you will continue to be crucial.  Another is that I believe whole heartedly that God has given me such a unique opportunity with this blog to reach out to others and if what I am facing is in any way similar to what another may be facing as well, then I know I can be of help to them.  Lastly, the world of Childhood Cancer is so hidden from the world, and even the stories that are heard or seen are not always filled with the nitty gritty.  My hope is that the ENTIRE journey may be shared, explored, talked about and in turn more families can be helped.  So here it goes:

LIFESTYLE CHANGE

     This is one of the biggest challenges we have been going through as an entire family, and it has been happening on many levels.  First, we have had to adjust to normal life outside of the hospital.  With time this has gotten easier, but every little pain, ache or fever sets our worries on fire, and not having an army of health care professionals at our side has proved unsettling.  While adjusting to normal life, God blessed us with our beautiful daughter Zoey, and caring for five children, ages 8 and under has brought another set of challenges that we deal with daily.  But the biggest change by far has been in the food we consume and products we use.  During treatment, I made as many changes toward a healthier lifestyle as I could, but time was in no way on my side.  We were in survival and fight mode.  Once treatment was done, it seemed strange that we were no longer doing anything to fight this beast and keep it from returning and it was so out of our control.  But Aaron and I knew that a change in diet was something we COULD control and felt that we finally had the opportunity to make the changes we so desperately wanted to.  After hours of research and through the support of organizations like The MaxLove Project and KICKcanCER we made the decision to adapt a modified ketogenic/paleo diet, not only for Hazel but for our entire family.  It was extremely overwhelming to begin with, and many tears were shed.  However, we are slowly adjusting and it is getting easier every day, with many successes and failures along the way.

PTSD

     During these last few months, I have also realized that Hazel and I both have been grappling with the effects of post traumatic stress.  For Hazel, thankfully, it has only manifested in small ways.  The most obvious of which is a heightened emotional state.  The most minuscule of things can make her cry as if it is the most terrible thing in the world and she can react irrationally to things that she normally would take in her stride. Also, we have seen her laughing about something, but due to her fragile state, it can quickly turn to nervous laughter accompanied by tears.  For me, it has manifested differently.  During the holidays especially, I found that certain sounds, smells, tastes, and sights sent me back to the holiday season of 2013 where my baby girl looked like this:

With these flashbacks, would come panic, anxiousness and many time uncontrollable tears.  I sometimes find it hard to get out of bed for fear of dealing with these memories.  I also would have days where I would be overcome with worry about Hazel's cancer returning.  All of these emotions made it very difficult for me to stay in the loop of the goings-on in the childhood cancer world.  To help myself, I implemented many techniques to cope with these feelings, with the biggest one being removing myself from the world for a while (hence my absence from Facebook and the blog).  By choice, my Facebook news feed is filled with the many other families who are fighting the same fight we have, which was absolutely crucial in the midst of treatment. But over the last few months, there were days it was almost unbearable to face.  I would NEVER go back to life without supporting these families and this cause, but I definitely needed a break.  

SURVIVORSHIP GUILT

     While I pulled away though, it brought on another emotion I had not anticipated: guilt.  I felt guilty for not wanting to be in the community.  I felt guilty for having a healthy child while we lost so many friends (and continue to).  I felt guilty on the days where I was only human and would get frustrated with normal things (spilled milk, anyone?!) and even with Hazel, who is not only a cancer survivor, but a normal (almost) 4 year old.  I mean, WHO WAS I to get frustrated when God spared my daughter?!  WHO WAS I to get frustrated when we successfully finished treatment and continued on with normal life?!  It is not fair that so many perish and it makes me feel overwhelmingly thankful, angry, frightened, and guilty all at the same time, making it difficult to process.

     I just have to keep reminding myself, that despite all of these feelings, God is always on our side and I must cling to what He says.  Like in Matthew 11:28-30 "Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light."

     Lastly, I want to share the results that we received yesterday from Hazel's scans.  In case you are new to the blog or may not remember, all of Hazel's previous scans have shown a light come up on her kidney.  But because it remained unchanged and in the same spot, the felt comfortable determining it was normal kidney uptake and not disease, and thusly declared NED.  The scans she had yesterday showed the same light yet again.  However, these were done on a new machine that gives a clearer picture of what is going on in these kids' bodies and it was determined that the light is actually a spot outside of her kidney.  This means Hazel does have, and really has always had, a small bit of residual disease.  This, of course, is not the news we wanted to hear, but it comes with many other facets of information.  First and foremost, her oncologist is encouraged but the fact that whatever this is has remained completely unchanged for nine months or more.  The thing with Neuroblastoma is that it is a fast growing and vicious cancer, that does not just hang around for months without changing.  This leads him to believe it could be mature Neuroblastoma cells that could just burn out, or something else along those lines.  However, because Hazel is a "high risk" patient (meaning at a higher risk for relapse), ANY light is something serious.  So he is meeting with her surgeon to go over the scans to see if he can remove it and help us get a better understanding of what we are dealing with.  He is concerned, however, with its proximity to her kidney and vital vessels, and surgery may put her at risk of losing her kidney, which would not be ideal.  If surgery is too risky, we may have to consider further treatment (i.e. more accutane or the possibility of chemo).  In conjunction with these scans, they also test her urine for catacholamine levels.  If elevated, it can be a marker for disease.  Her last tests were normal, so that is very hopeful, but we will not get the results from this go around until Monday.  Her oncologist will take her scans, urine sample results and blood work all into consideration and will be meeting with Hazel's whole team on Thursday to discuss what we should do from here.  So hopefully we will have a bit more information by next Friday.  SO PLEASE PRAY FOR CLARITY FOR THE DOCTORS, PEACE FOR OUR FAMILY AND HEALTH FOR MY DAUGHTER!!