Treatment

Today is the day that our new normal begins.

Today, we made our final decision and had a double port (which solved our dilemma!) placed inside our daughter.

Today is the first day of a new treatment protocol that has no protocol.

Today is the day that our brave little Hazelnut begins her fight against cancer for the second time.

Today, chemo has already begun.

At this very moment, I am sitting next to my beautiful daughter as her first dose of chemo flows through her veins.  To be honest, I am heartbroken, terrified, anxious and in utter disbelief.  This all still feels so absolutely unreal.  

While I cope with this surreal moment, I figured I would take another one to update all of you.  We spoke with the doctor last week to discuss Hazel's "treatment plan".  As some of you may know, when a child is first diagnosed with cancer, the doctor gives the family a treatment protocol, or what we like to call a "roadmap".  When a child relapses, this is not the case, so I use the term "treatment plan" fairly loosely.  Many times, children who relapse do not respond to the first form of treatment, so many different options are tried.  I like to describe it like this:  The cancer comes back, so you throw everything you know of at it and hope something sticks.  

So right now, we are throwing our first punch with the new treatment of Immunotherapy and Chemotherapy together that I have detailed before.  The doctor actually seemed slightly optimistic, which is not generally the attitude towards relapsed Neuroblastoma.  She has seen very promising results recently, and has hope that Hazel will respond favorably.  We will do this treatment inpatient this week, then again three weeks from now.  Once that second round is finished, Hazel will have another round of scans to see how she is responding (which will fall sometime at the end of September).  If she is responding, then it will be very good news, and we will continue on the same protocol with the hope that it will just melt this cancer away.  If she remains stable, we will, more than likely, continue with the protocol and reassess at the next round of scans.  If she has progressed, then we move onto our next line of defense, which in our case will be the targeted therapy for her ALK mutation.  We will continue with this wait and see approach, and change our course if necessary until we bury this thing in the ground!

Many families have contacted me saying that their children have done very well on this treatment, and even get to stay home the whole two weeks between cycles with very little side effects.  So it is my hope that we can have some sense of normalcy in between.  However, it is still very possible that the treatment takes a toll on her and we end up back here more often than we would like. So please be praying that this does not happen.  As we get more settled in our room this week, I will write the post I have been planning that details how you can specifically be praying for us and helping our family during this time. For now, just pray that this treatment, and the supplemental things we are doing at home will all work together over the course of the next few weeks and do what Hazel wants it to do and "kick this cancer in the butt!".

Biopsy Results

     We just heard from the doctor, and the pathology has confirmed what we expected, but still our worst fear, that these spots are indeed relapsed Neuroblastoma.  Although very difficult news to swallow, it feel relieving to finally just have the answer so we may move forward, prepared to fight for our little Hazelnut's life.  Her bone marrow biopsy procedure was two fold: a bone marrow aspirate and a bone marrow biopsy.  The pathology is still pending on the biopsy, but the aspirate is totally clear of cancer cells!  So we are hopeful the biopsy will also come back negative.  Bone marrow is the most difficult place to treat with Neuroblastoma, so we are glad at this news because it means that she just has one more thing working in her favor.

     Now that we have this information, we meet with the oncologist tomorrow afternoon to go over treatment protocol and sign consent forms.  We will then have a better idea of what the next few months will look like for our family.  What we do know now, is that her inpatient treatments will come every three weeks, and then we are hopefully home for the two weeks in between.  But that will all be dependent on how Hazel's body tolerates the treatment.  Last time, we were in the hospital with low counts and fevers in between every single treatment, and it was very difficult on all of us.   These treatments will begin next Monday, August 29th.  She will have her port/line placed that very morning, and will receive chemo just hours later.  We are still trying to make our decision on what line to choose, but our hearts, and Hazel's are leaning more towards the port.  She said, "I think I made my decision.  I will deal with the pokey's because I really want to go swimming.".  And since we will never have an idea how long her treatment may take, we think this is the best decision for her.  If she were to have a line, that would be an indefinite amount of time that we would be taking away one of her most favorite things, and we do not think it would be fair to do that. We will continue to pray about it, and we will assess once she begins treatment, if it was, in fact, the right decision.

     Many of you have asked how you can help our family, and we have several ways for you to do that.  

• First, is to be praying!  I will write a post later this week or next on how you can specifically be praying, but I am just too emotionally and physically drained to do that now.  
• Second, is to make a donation to our family.  You can do that through the wonderful Talbert Family Foundation at www.talbertfamilyfoundation.org/pages/Hazel.html
• Third is to sign up on our Care Community so you can check our calendar and list of needs so you can see exactly how to help us in the best way.  To do so, please go to www.heretoserve.org and click on the JOIN button and fill out the registration form. Be sure to say it is Hazel Hammersley when they ask who you would like to help. You will receive a confirmation email immediately that confirms your registration was received. Within 24 hours you will receive another email with link to Hazel's Care Community! Use the link to set up your own personal login in and password to Hazel's Care Community.

     Thank you all so much for your support these past days.  Knowing we have an army behind us and around us has given us all the strength to keep pressing forward.  As before, continue to check back here for updates, and follow along in the Care Community to see if our needs change.  As for now, let me leave you with this: Hazel is feeling very well, and even with the knowledge that her cancer has returned, she continues her life as a spunky, lively and loving 5 year old little girl.  She has LOVED every single day of Kindergarten, she has spent many hours playing with her siblings and friends, and is showing so much determination to kick this cancer like she did the first time!

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.