Unplanned Stays

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     Our little Hazelnut is still in the hospital or this unplanned visit. Much like her frontline treatment, Hazel has spiked neutropenic fevers after each round of chemotherapy, sending us to the hospital.  This is done to protect her and to keep a watchful eye on her, for when her blood counts are this low, she is in danger of contracting very dangerous illnesses/diseases and even going into sepsis.  The doctors put her on doses on antibiotics to protect against these potential risks. However, the antibiotics (even when we have her on a daily probiotic) can wreak havoc on her gut, and can kill all the good bacteria that is used to fight some of these infections, thus allowing some bad bacteria to potentially grow.  It is difficult to weigh the risks and benefits to these antibiotics, and to be honest, I am still unsure of the right decision for her.  Last time, she ran the course and came out of her neutropenia unscathed.  This time, however, she has developed a GI issue called C-DIFF, which causes some pretty extreme diarrhea, and she also has caught a cold.  This has made our stay not as easy and has also put us in strict isolation.  But true to form, Hazel continues to remain positive and finds the joy in each day (much better than I do, I'll admit).  While uncomfortable, these two complications will NOT keep us in the hospital longer, unless more complications arise. However, her counts still remain at zero, so we currently do not have any plans to go home. So please be praying for a miracle to get us home by Christmas!

     Hazel was also to have her scans this Wednesday, to asses this treatment's efficacy.  Thankfully, the scans will still be performed, as planned, but we will just be inpatient as we do them.  This actually makes things less complicated for me, so I suppose there is a silver lining to be had!  Please pray for these results, as we will get them the same or the next day!

    Despite not quite feeling herself, Hazel continues to radiate her God given JOY.  She has spent much of our time here thinking about all of the other patients on the floor. She made presents for, gave some of her unopened toys to and wanted to visit and cheer up our roommate (who we shared a room with before we were put in isolation). And she wanted to make every child a handmade star with a heart in the middle and written on it, in her word and handwriting " FOR KIDS AND HOPE". She said, and I quote, "Every kid has to go through treatment, and surgery and stuff. And they don't feel good, so I want to bring them joy."  Boy this girl just fills up my heart to the brim!  I have really been struggling to find the joy lately, but God is certainly using my own daughter to teach me immeasurable lessons.

Hair Shaving Party!

     Since coming home for Thanksgiving, our little Hazelnut has been doing well.  She was very tired for the first few days, but has only been getting better!  We had a wonderful time with family this past weekend and were so incredibly thankful to be home.  Per her treatment plan, we were supposed to begin her next round of chemotherapy yesterday (11/28), but her counts have still not recovered completely.  Her Absolute Neutrophil Count (ANC) should be above 500 to not be considered neutropenic, and a normal range is actually closer to 1500.  When her blood was measured yesterday, her ANC was 320.  Considering they had been at zero for about two weeks, we are so glad to finally see them climbing upward!  However, because they are still under 500, she is still very vulnerable to infections and certainly not strong enough to be knocked down again by chemo.  So the doctors and we decided to wait another week to give her time to recover.  She will have her next round of chemo beginning on December 5th.  This also means, her scans to determine her progress will also be pushed another week, placing them just days before Christmas.  My whole heart wishes we will get a Christmas miracle and have good scan results, so please please please be praying!

     While this weekend was filled with a lot of family time, we also found that it was time to shave Hazel's head.  The chemotherapy has been making her hair come out in droves, and it was beginning to bother Hazel.  She actually has been asking to shave it for weeks!  She used to love having a bald head and putting fake tattoos all over it, so she has been looking forward to being bald again.  Leave it to a beautiful child to have this perspective, right?!  We could all learn so much from her!  Now, all of our children (except the baby) have been wanting to support their sister in any way that they can. This head shave was no different.  They all wanted to stand in solidarity with her and decided to shave (Aaron and I did as well)!!! It was a very powerful, emotionally moving and empowering experience.  Here are a few photos from the evening:

Hazel's 7 1/2 year old sister, Elizabeth

Hazel's 4 year old brother, Jonah

Hazel's 10 year old brother, Micah

Our family photo (minus the baby)

My absolute favorite photo of the night

    

New Treatment

     On November 8th, Hazel began her new treatment.  She now takes a daily pill called Xalkori.  This ALK Inhibitor is the targeted therapy that I have discussed before, and targets her ALK tumor mutation.  Common side effects with Xalkori use include upper respiratory infection, nausea, vomiting, stomach pain, decreased appetite, insomnia, dizziness, blurred vision and/or floaters, tired feeling, diarrhea, constipation, rash or itching, cold symptoms (stuffy nose, sneezing, sore throat), numbness or tingling, or swelling in your hands or feet. We have noticed some of these side effects already, and it was difficult for Hazel to adjust at first, but she seems to be adjusting more now and taking it in stride (which breaks my heart to even have to say that!). 
     
     In addition to this daily medication, she began her first cycle of chemotherapy.  She receives to different chemotherapies for 5 days in a row (thankfully outpatient), every three weeks.  These particular chemos have made her feel pretty nauseous, and she spent quite a few mornings vomiting.  We now have her on round the clock nausea meds, and in combination with the cannabis oil and essential oil regimen she is already on, we seem to have it under control.  Her hair is also falling out in fairly large clumps, so a head shaving party is in the works!
   
     As expected this treatment has caused our little Hazelnut's blood counts to drop dramatically.  As some of you may have seen on Facebook, she spiked a fever after her counts dropped, earning us a spot on the Oncology floor at the hospital last Tuesday.  Typically, a fever spikes and it is just indicating that these counts are dropping.  However, a fever could also be a sign of an infection and when her counts are zero, she has no immune system to speak of, so an infection can be extremely dangerous.  While in the hospital, Hazel receives prophylactic antibiotics to protect her from any potential infection, and her blood is sent for testing to see if anything is indeed growing.  So far, she has had no signs of infection, so for that we are thankful!

     Currently, we are STILL inpatient, not because of any infection, but because her counts have remained at ZERO!  We cannot be discharged until her counts begin an upward trend and get closer to a safe range (her Absolute Neutrophil Count or ANC needs to be close to 500 or above). Last week she spent much of her days in bed, feeling tired and unwell.  However, since this weekend, she has felt much better, and has spent absolutely NO time in bed!  She has been playing, having dance parties, doing crafts and school work, and eating up a storm!  So for being stuck as long as we have, we can still rejoice in her feeling well! A verse that someone shared with me recently has spoken volumes these past weeks.  Lamentations 3:22-23 " Because of the LORD’s great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness."

     Please be praying for our Hazel's counts to recover in these next days so that we may be home for Thanksgiving.  We have been in the hospital for many special occasions and holidays before, and it is not easy to be separated.  Not only on Hazel, but on our other children and on both Aaron and I.  Pray that this verse can ring truth into our lives, that we may not be consumed by the stress and the difficulty of what we are going through, but instead rely on His compassion and faithfulness. 



   

Update and Scan Results

Hazel finished her third round of treatment, and it went very well! She felt felt pretty good the whole time, and even spent quite a bit of time up and out of bed. After coming home, she felt pretty tired and nauseous for a few days, but bounced back very quickly. She has been going to school, the pumpkin patch, sleep overs and play dates, celebrated both of her brothers' birthdays, lost another tooth, and has just spent time enjoying being a kid! Im so thankful for such gloriously normal time, especially leading up to her scans.

Now the scan results:

The scans have shown that the treatment is not working and the tumors have grown....Good news is that they have only grown a very little bit and the doctor believes the tumors are not very aggressive. The treatment probably worked in the beginning, but the cancer has already figured out a way to overcome it. It is probably helping to slow the growth, but this is just not enough. We want the cancer to be disappearing, not inching forward!!

So we are switching gears. Hazel will begin a new therapy that involves a targeted inhibitor for her ALK mutation, paired with two types of chemotherapy. The nice thing is that the ALK inhibitor is a pill to be taken twice a day, at home; and the chemo is every three weeks, for four days, and administered outpatient! The tough thing is that this chemo has a higher toxicity level. So she will indeed lose her hair, feel more unwell, and will become immune suppressed (causing more unplanned hospital stays and being less likely to go to school). They want to give her the next week off, feeling she is stable and strong, and then begin treatment the following week. We also will still continue with all of the complimentary and natural therapies we implement at home. We are literally trying everything we can!

The doctor is still remaining hopeful, because even though the treatment we all thought would work best, has not worked, we are not yet out of options. Not only are we not out of options, but the options we have left are still promising.  Hazel's genetic testing of her tumor came back, and it actually has a couple of different mutations that have targeted therapy. The ALK mutation, has the targeted therapy that is currently in use; and another drug, that is even more promising, that should be approved in the beginning of the year. If the one we try next doe not work, our hope is that she can remain stable enough to try the next one in the new year. The doctor said we have a bag full of keys, and one lock. We just need to find the right key. My worry is that because relapsed Neuroblastoma is so unbelievably tricky and clever, we may not have the right key at all. So please be praying that we find the right key!!!! Thankfully, because her tumors are not aggressive right now, we still have time to try and figure it all out.

To be honest, we were very disappointed to hear this news, but the more we spoke to the doctor and with each other, the more hope we are beginning to feel. We are still scared, unsure and overwhelmed, but we still have hope! And the bible says in HEBREWS 6:19 (the bible verse on our Hope for Hazel shirts) "We have this hope as an anchor of the soul. Firm and secure". So please be praying for our family that we can continue to cling to this hope and begin to feel the peace only God can give.

Scan Results

     Today was a very long day for Hazel and I.  We checked in early this morning for scans, which is a very long process.   She did not finish waking up from sedation until about 2:30pm.  Then we met with the doctor around 3:30pm to go over results, and then we were sent to get her first dose of her next round of treatment in the infusion center.  We finished this process at around 8:00pm so they decided to just admit us onto the oncology floor instead of having us check back in tomorrow morning.  We finally just got settled, so I can now fill you all in on the results.

     First of all, Hazel's bone marrow biopsies came back clear!  So this means that the cancer has still not spread to her bone marrow!  Her scans, however were not as obvious.

     The results of her scans are actually a bit complicated and convoluted. But after much discussion and deliberation with her doctor it boils down to this:  Her scans have changed since the last set of scans, but it is too difficult to tell if these changes are positive or negative.  The spot in her neck grew larger, but looks like it is not lighting up as much, and even appears that it may be dying from the inside out (but this may not be the case).  The other spot(s) in her abdomen are slightly smaller, but are lighting up brighter.  

     Unfortunately, the way that PET scans determine uptake, does not actually reflect Neuroblastoma very accurately.  So, these brighter spots could just be brighter because of inflammation, or indicating the immunotherapy is doing it's job.  But it could also indicate that her cancer is becoming more active.  It is not usual for a Neuroblastoma patient to receive regular PET scans for this reason.  Usually, children receive MIBG scans. These scans are Neuroblastoma specific, and only light up if there are Neuroblastoma cells, and not for any other reason (with the exception being scar tissue related to previous Neuroblastoma spots).  Hazel did not receive the MIBG scan this time because the one she received in August did not light up, when the PET scan did.  The doctor does not really like doing PET scans because it does not give her the information she is really looking for, however, we needed to do these as a comparison.  Unfortunately, the results were so mixed that it did not give us an accurate comparison.

     So we had to spend much time discussing whether or not to proceed with the current treatment Hazel is on, or to try something different.  Most kids who respond to this treatment, do so fairly quickly, so the doctor is concerned that she did not show a very overwhelmingly positive response. So her first thought was that this may not be working, so we should move on. But again, with the PET scan not giving us the most accurate data, we may not really know if she has responded or not.  So we have decided to do one more round of this chemo/immunotherapy combo this week, and in two weeks have her do an MIBG scan.  The hope is that the original MIBG scan did not light up because we were so early in Hazel's relapse, and that it has been long enough for it to show up.  So maybe we can get a better idea of what is going on in there.

     This does, however present us with a couple of dilemmas.  The first is that we are continuing a treatment that may not be effective for her, which, in turn would only be allowing this cancer to grow these next two weeks.  I pray that this is not the case, but if it is, we will move onto something new immediately.  More than likely, it will be the directed therapy for her ALK mutation.  The second, is that this is working, but her new tumors are no longer MIBG avid and will not light up on the MIBG scan either way.  If this is the case, we will do another PET scan to see if we can see any changes from these last two scans.  Both the PET and the MIBG scans are also done with CT scans, which is the scan that gives us our measurements, but does not measure cancer activity.  So we will still get measurement comparisons with both scans, which is good.  

     As you can see, we got a lot of complicated information today, and I didn't even share all of it.  My brain is on overload now, and I am in a bit of a fog, so I hope that this is clear enough for you.  But really, all I need to make clear is that our little Hazelnut still desperately needs your support and your prayers as we continue treatment, trying to make the best decisions, and follow this disease closely.  

CYCLE #2 DONE

     I have been meaning to post this update on how our little Hazelnut coped with her second round of treatment, but to be honest, I have just not had the strength.  Not because Hazel struggled through treatment.  In fact, she did remarkably well!  Her pain and itchiness was so well managed, that she did not complain one bit.  Besides being run down, she felt fairly well!  She even got out of bed every day!  
     I have just not had the strength because our week being home has been exceedingly overwhelming.  Our first few days are generally difficult, because Hazel doesn't quite feel herself yet, and I have to transition to being a mom of one, focused on just one thing, the care of my daughter; to full time homemaker, mother of five, wife, chauffeur, housekeeper, meal arranger and preparer, etc, etc... I have found that, so far, these transitions have not been easy ones for me.  However, I also find myself being immensely thankful for just being home.  It can sometimes be a battle in my mind over which emotions win.  Then, Hazel developed a cold (not really a big deal), but also mentioned to me that a molar was loose.  Not just any molar, but one of the molars that was crowned due to deterioration from prior treatment. So after meeting with the dentist, we discovered that her tooth was infected, and we needed to have X-Rays done to see how to proceed.  The X-Rays confirmed that her tooth is beyond repair and will need to be extracted.  Just one more thing to schedule and to worry about, and for my little Hazelnut to cope with.  On this very same day, Hazel spiked a fever of over 101.3 degrees fahrenheit, which in the cancer world, earns you a coveted spot in the Emergency Room and CHLA.  We spent the whole night there.  Thankfully, her labs came back and all her numbers were within normal and safe range.  They gave her a dose of antibiotics and sent us home at 4:00 in the morning. So, needless to say, our week at home was not uneventful!  Despite the fevers, infection, long appointments and fatigue, Hazel still bounced back very quickly and showed us all that she's got this!  She even got to go to school on Friday!

     In addition to all the happenings going on with Hazel, our Neuroblastoma community lost two children this past week, both of whom I either knew personally, or followed very closely and became friendly online.  On Friday, I attended the funeral for one of these children, Eli Gradon.  Eli was a remarkable young man, with an equally remarkable family and community.  His father Mark, always by his side, never failed to be there for every other Neuroblastoma family he knew and saw at the hospital.  Just such a gracious and kind human being.  While difficult, there was something that happened at the funeral that just struck me.  During his speech, Mark spent almost the entire time giving his heartfelt thanks and gratitude to those who helped his family.  Then, at the end, he mentioned several cancer fighters by name who are still in the fight, including our Hazel. He said that they will continue to fight in honor of their son, and in honor of our children, so that that can be healed once and for all.  This right here. This is our community.  A father, bereaved by the loss of his son just the morning before, standing in solidarity with other families so we don't lose hope.  Mark, if you are reading this; thank you.  Thank you for being you, and for sharing your son and your family with all of us.  Thank you for speaking healing for my daughter.  Thank you for not giving up the fight.  We love you.
     I also have been struggling with anxiety because Hazel's doctors have scheduled her first scans to see if the treatment is working, and they are scheduled for TOMORROW. I would have liked to have included you all in on this detail sooner, but as I said before, I just could not sit down to write.  My brain was not connected to my hands this week.  Hazel will also meet with the dentist at CHLA and receive a bone marrow biopsy(on Wednesday).  Hopefully we will have results to share on late Tuesday or Wednesday.  If not, we meet with her doctor on Monday afternoon, right before beginning her next cycle of treatment that evening.
     So please be thinking about and praying for Hazel and our family throughout the rest of this week.  Pray for good results from these scans.  We want to see this cancer already melting away!  

CYCLE #1 DONE!

     I truly cannot believe that our little Hazelnut has already completed her first round of treatment for relapsed Neuroblastoma.  Mostly, it all just feels so surreal, but in other ways it feels all too familiar.  Checking back into the hospital, I found my brain jumped right into the fight as if we never even took a break.  I remember telling my husband that it seemed like we were just in treatment and we were back for another round.  But then there were other moments when I was sitting alone and memories of the past, cancer free, two year flooded my mind, and being there became so overwhelming.  It was comforting though, for both Hazel and I, to see so many comforting and familiar faces in our friends, nurses and doctors.  We all kept saying, "It is so good to see you, but just not under these circumstances".  
     
     While it was difficult being back there, Hazel did everything like a champion!  In fact, she was counting down the days until her return.  Since we spent so much time at the hospital when she was younger, I believe it felt like returning to her second home.  She kept talking about her "own room with her own TV", going on her "pole rides", and the amazing "play room".  And what child in a family of 7 wouldn't like to have Mommy'a undivided attention and days where people bring gifts and surprises all the time?!  I am so thankful that Hazel does not associate feeling poorly, and her difficult experiences with being at the hospital.  Even this time, when treatment made her feel so bad, she still did not want to leave come Saturday. Leave it to a child to face these circumstances in this way.  Just like the St. Baldrick's Foundation's new Childhood Cancer Campaign says, KIDS ARE GOLD!
     
     As I said, treatment this first week was very difficult for Hazel.  The chemo causes nausea and diarrhea, and the immunotherapy causes, in her, extreme pain and itching, and gives her a fever (she was fighting a 103 degree fever most of the week. So not only do they have chemo and immunotherapy running, but they also have her on a continuous drip of pain medication, anti itch medication, around the clock anti nausea medication, Benadryl and Tylenol. One of the chemotherapies she has to take by mouth, as well as the Tylenol (every 4 hours), and an antibiotic to help with the diarrhea.  It was very difficult for her because it took us three days to find all the right combinations and timings of the medication to make her comfortable, so she spent those first days in such misery, telling us that what we were doing was not working.  Even thought she was miserable and frustrated, she still remained so unbelievably brave and agreed to everything.  She slept for a lot of the hours, so that also helped.  Your prayers and good thoughts were definitely felt and clearly abounded in that room. 

     After coming home from a week of difficult treatment, and not eating, Hazel was very tired and not very hungry.  It took her a few days to recover and begin eating again, but thankfully, side effects have remained very minimal!  Las time she was in treatment, Hazel felt very unwell from the chemo, and we were back in the hospital for days and weeks at a time dealing with low blood counts and troubling side effects.  Hazel has felt so well this week, that she even returned to school a few days!  Her labs were drawn on Thursday, where she had her very first port access while awake.  Although very nervous about it, she did it so bravely, and it went extremely well!  I was concerned to get the results because low blood counts would mean no school and back to the hospital for us, but they came back and were great! Since her counts have not dropped yet, it is highly unlikely that they well, since her body should just continue to recover.  So that means we get a full two weeks at home between treatments with our little Hazelnut feeling well!  THANK YOU GOD FOR HOLDING OUR DAUGHTER IN YOUR HANDS!!!

     I know I have stated before that a post is coming about how you can specifically be praying for us, and I promise it still is.  However, our big fundraiser, The Ever After Ball is tonight, so with coming home and figuring out our new normal, and getting ready for this event, I have just been so busy!  It will come though :)  Also, many of you have been asking about sending cards and gifts to Hazel.  We have opened a PO BOX just for this very reason, and we would be happy to hear from you all.  I just ask that you do not send too many toys, because with five children we not only have enough already, it would also not be fair to her siblings. Hazel, however, loves receiving cards, stickers, headbands/hats, nail polish, and things of that nature.  Please send mail to:

Hazel Hammersley

PO BOX 2001

Simi Valley, CA 93062

     Here are other ways to help our family as well:

• Sign up on our care community! Here you find a list of our needs and a calendar with specific tasks you can sign up for.  Just go to www.heretoserve.org and click JOIN.  When filling out the registration form, be sure to indicate you want to help Hazel.  An email will be sent to you for you to join us!
• Donate to our family!  Go to www.talbertfamilyfoundation.org/pages/Hazel.html
• Buy a HOPE FOR HAZEL bracelet and stand in solidarity with our family. They are $5 a bracelet, and we have sizes Regular and Small (I wear the small). To do so, either send a self addressed, stamped envelope to our PO BOX along with a note indicating how many bracelets you would like and in what size; or go to our donation page link above, select your donation amount, and in the "GIFT INFORMATION" section, indicate how many bracelets and what sizes.

Hebrews 6:19  "This hope we have as an anchor of the soul, a hope both sure and stedfast and entering into that which is within the veil"

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.

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: