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!".