Our Little Hazelnut

It has been an incredibly difficult past few days for the Hammersley’s. Lauren is taking some much needed rest so this post is written by Lauren’s friend, Megan. For those of you not on social media Lauren wanted to make sure you were all updated on what has happened these past couple days. You have all been faithfully praying and supporting the Hammersley’s over the past 5 years and we are all so thankful for you.

Friday morning, our sweet Hazel went to be with Jesus. What we thought was pneumonia, was just extensive disease progression, consuming Hazel’s entire left lung and other parts of her body. She was surrounded by her family and siblings and passed peacefully holding her daddy’s hand and resting in her mama’s loving arms. Hazel was either resting quietly, answering questions appropriately or talking of kitties and butterflies right up until the end. When she was ready, she spoke her last word of “good-bye” then she was gone. Her body was tired from 5 years of fighting, but her spirit stayed strong till the end. Hazel has been so abundantly loved and has been such a source of inspiration to all of us. Aren’t we all better because of her?? We are all trying to fumble our way through the days without her. It will take time. Hazel had a tribe of warriors surrounding her and we all feel a deep sense of loss. We selfishly wish she could still be here with us, but know without a doubt she is pain free and full of joy in Jesus’ loving arms. She fought her battle well. No more chemo, no more surgery, no more fevers, no more hospital stays. Enjoy the well deserved rest, sweet Hazel❤️

Even though it has been a long battle the end came so suddenly that we all feel unsure of what to do or how to help. I love that compassion is so natural for all of us, isn’t it? We all see when there is a need, a deep void, and we all have a desire to help fill it and attempt to make it better. If you didn’t you wouldn’t have been following Hazel’s journey this long. The Bible says that our God is a God of compassion and the God of all comfort. We are all made in His image so it’s fitting that we all want to help❤️ For now, please consider donating to Hazel’s fund at: http://www.bumblebeefoundation.org/neuroblastoma-relapse-bees.html
I’m sure more needs will arise, but right now is a time to be still. To grieve. To remember the good times. To begin to heal. Please continue to pray for Aaron and Lauren as they process the loss of their daughter. They have difficult decisions to make and a life to face without Hazel. They will be experiencing a very new and foreign sense of normalcy in their lives in the days to come and it will take time to adjust. I can only imagine how difficult it will all be. Please pray for Micah, Elizabeth, Jonah and Zoey as they process the loss of their sister. They have been incredibly resilient and God has definitely been comforting them in His sweet ways, but I know the road to healing won’t be easy. Thank you again for your love, your support, and your prayers. I know they could not have gone through the last 5 years without every single one of you. Let’s continue to love on the Hammersley’s and lift them up in this difficult time. ❤️

Reality and Hope

IF YOU WANT TO HELP OUR FAMILY, GO TO WWW.HERETOSERVE.ORG, CLICK "JOIN", AND FILL OUT THE REGISTRATION FORM TO JOIN HAZEL'S CARE COMMUNITY. WE HAVE AN AMAZON WISHLIST, A CALENDAR FOR HELP AT HOME, AND A LIST OF WAYS TO HELP

     

     I know I have been a bit MIA from the blog, in favor of posting updates on Instagram and Facebook, because it was easier. But I knew that many of the army of people praying for and supporting our daughter only get their updates through this blog, I knew I would need to consolidate everything that has happened recently.

     If you haven't seen my Live Video on Facebook, I would encourage you to check it out if you can. I recorded it during a time where I couldn't really wrap my mind around what was going on, and I think it turned out to be a really effective way for you to see my heart.  Writing, while effective in communicating information, doesn't always convey how emotional this childhood cancer journey can be for a parent.

     For those of you who can't watch the video, here is a brief update:

     My last posts before the video had detailed how Hazel was recovering from some difficult treatment for her relapse.  Despite the harsh side effects, Hazel recovered well, and she had a set of scans that showed incredible improvement.  The tumors shrank by 30-40%.  We were finally feeling hopeful! She was feeling so good and was enjoying being home and being our little Hazelnut!

     Just a couple of days before Hazel was set to start the next round, I noticed that she was not acting quite like herself.  She was run down, couldn't get comfortable in bed, and just all around feeling "icky".  However, she wasn't in the extreme amounts of pain she had been in the past, so I tried to silence my anxieties and chalk them up to cancer parent paranoia (it's a very real thing).

     But come Monday morning, before I headed to the hospital, my gut kept telling me I needed to call the doctor.  And it was God who spurred on my "mother's intuition" back in 2013 that led to Hazel's initial diagnosis.  So I called her oncologist, and said, "Hazel is just not herself, and I'm not entirely confident that she should start the next round of chemo.  I think we should move her scan from next week to this week instead."

     After a few questions, Dr. Marachelian agreed with my assessment, and they scheduled an emergency CT for that afternoon. Hazel was asleep in the stroller when I got the text from her doctor:

I want to see you in clinic. It's worse. 

Come up now and we can chat.

     My heart was in my throat, and I called Aaron to rush over to meet me at the hospital.  I pushed Hazel's stroller and got to clinic in record time.  Thankfully Aaron had made it to the room before Dr. Marachelian arrived, because the news we had coming needed to be heard together.

     The scan, which was on March 5th, showed that although the two major tumors we have been watching were still stable, there was an abundance of new disease.  The doctor noted at least 5 lymph nodes that were now affected with cancer, and possibly more that we just couldn't see.  It was clear that Hazel's cancer had, once again, figured out away to resist the current treatment we were on and we were to stop immediately.  Dr. Marachelian was visibly worried, and Aaron and I were just broken.  She wanted to get a a PET Scan, because it would give us a clearer picture of what was going on.  Her concern was that it was going to be more involved than what the CT was showing, and if it was, we may not have a lot at our disposal to try and treat it.

      Aaron and I spent those next few days in a state of shock.  I cried myself to sleep every night.  My brain was making plans.  Plans that I did not want to make, but were happening anyway....

     We were home only for a half a day though, when Hazel spiked a fever and we ended up inpatient at the hospital.  By the end of the week, Hazel's pain was increasing and her well-being was decreasing.  So we ran the scans and a few other tests while we were there.  We got the news that the PET/CT was actually NOT worse than the CT.  It looked exactly the same!  Of course, this wasn't news that an average person would categorize as "good", but when all you have been given is bad news after bad news, a scan like this does become good news.

     I was thinking that it was a real possibility that Hazel wasn't going to make it out of the hospital that week.  I was almost certain we were going to have to say goodbye soon.  And let me tell you, I do not wish that thought process on anyone.  It is debilitating.  And 7 families are going through that goodbye every single day!  SEVEN FAMILIES!

     Thankfully, we were able to manage all of Hazel's symptoms with oral medications and our supplemental/natural care, that we were able to go home by that weekend.  Dr. Marachelian wanted us to come see her on Monday, so we could discuss a plan for Hazel.  She wanted us to have very real conversations over the weekend though, to make sure we were on the same page, regarding Hazel's future care.

     When we met together on the 12th, we had all come to the same decision that we were not ready to stop trying to fight this thing.  We all believed that there could still be something out there that could work for Hazel.  However, we also got news that the cancer has begun to spread to Hazel's bone marrow.  It is only affected at 5%, so it is not much, but since she has not had bone marrow involvement at all, for the past five years, this was very disappointing news.  This cancer is moving fast,  getting stronger and getting smarter.  And research is just not happening fast enough!  It has become very clear, that a cure may not happen for Hazel.  Researchers and doctors are working so hard to find the most targeted, individualized therapies, but the money, the awareness and the governmental support is just not there!  I am so glad we are fighting to keep our kids safe at school, but I wish people would fight just as hard to keep our kids safe from cancer.  IT IS KILLING OUR CHILDREN AT A MUCH HIGHER RATE!

     But even with this disappointing news, and knowing the reality of this beast, we still agreed we were not throwing in the towel and were going to hang onto hope.  So we began to go through all of the possible treatments we could try.  We decided that right now, Hazel's body is just not well enough to do high dose chemo treatments, however, we also felt like her body was strong enough to handle some chemo.  So the ICE protocol that we were thinking of doing before was out.  There were clinical trials that consisted of high dose chemo, paired with a study drug, so those were out.  There were clinical trial that consisted of only a study drug.  But we didn't feel like that would be enough at this point.  If there was nothing else to help Hazel, we could try those in a last-ditch effort, but we weren't there yet.  So that left us with clinical trials that had a lower dose chemo, paired with a study drug.

     So we all came down to one decision.  A trial that included and oral chemo called Ironetecan, paired with a new drug that targets something called the N-MYC amplification.  The N-MYC gene is responsible for replicating cells, and when a child with Neuroblastoma has an amplification of that gene, their cells get replicated faster than the average person.  As you can imagine, that is not good when those cells are cancer cells.  We have known that Hazel has had this amplification since diagnosis, but it wasn't until recently that there have been targeted therapies for this.

     We had to run a few more tests, and sign a bunch of papers, before starting the trial, but Hazel was able to begin on March 16th.  The good thing, is that she was able to do all of the treatment from home.  The tough thing, was that it was all oral. The chemo was a concoction of liquid, in a syringe, and the study drug was 5 different pills!  But she did it all like a champ, and finished this past Tuesday.  We aren't confident that this is the key, but we are hopeful that it could work for Hazel.  But what we really need is a miracle!  I know that God is capable, so I am asking, in faith, for you all to pray for nothing less!  The plan is to re-scan on Monday, April 2nd.  The day after Easter.  Wouldn't it be amazing to witness a miracle after celebrating the miracle of Jesus' resurrection?!

     This treatment is not expected to drop Hazel's counts as much, and the side effects should be minimal.  However, over the course of the past couple of weeks, Hazel still has not been feeling well.  Her pain keeps coming and going, she is very run down, she has not been up to eating much, and has had a cough that hasn't quit.  As you may remember, Hazel's left lung has been struggling with fluid build up because of the placement of her tumors, and now, some of the lymph nodes that have appeared are also around this lung, so we have been very careful about keeping a watch on this.

     Over this past weekend, Hazel's cough seemed to get a little worse, and she spiked a fever.  I was not in town, so my mother (an angel on earth), took Hazel to the emergency room.  She was admitted to CHLA at 4:30AM Sunday morning, and it has been discovered that her cough has now turned to pneumonia. Pneumonia in cancer kids can be very dangerous, especially when immunocompromised.  However, Hazel's immune system is actually in high gear!  Her white blood cell count has not really been affected by the chemo, and they are actually in overdrive, which means her body is trying to naturally fight this thing.  So still a precarious situation, it is comforting to know that her body is fighting with us.

     We have no idea how long we will be inpatient, or how long it will take to treat this pneumonia, or what it will entail, so please pray for an easy recovery.  She is exhausted and doesn't feel very well at all, so I am hoping that what we are doing will work fast.  We may end up moving the scans up to this week, but I won't know that until I speak to Hazel's oncologist.  If the scans reveal that the tumors are not responding, we have a few other things we can try.  But if her cancer begins growing out of control, our options will begin to dwindle.  Please keep praying! Pray that despite our realities, we can see and find the hope.

Hazel Today (she currently
needs oxygen support for
the pneumonia)

Progress

     The word progress has come to mean so many things to me over the past several months.  Before cancer, progress always pointed to something positive; something good.  But now, progress can sometimes be the last thing I want to hear.

     Since my last post here, a lot has happened.  In November, Hazel was hospitalized with extreme amounts of pain, and several difficult side effects to what we determined to be a tumor flare.  We were all just trying to hold on to get Hazel on a new clinical trial that we all believed had a very good chance at curing our little girl.  

     Between our discharge, and the day before Christmas Eve, we thought we had it.  Hazel was making such good progress, that I was even beginning to be filled with a hope once lost.  I mean, she was in school everyday, eating like a champ, bursting with energy and gaining strength like you wouldn't believe (she crossed the monkey bars on her own for the first time!).  It was a glorious month!

     

     Then on Christmas Eve, Hazel's back pain had returned as if someone just flipped a switch from "OFF" to "ON".  And it progressed so quickly.  I was terrified.  But in true Hazelnut fashion, she was determined to be home for Christmas.  Like any 6 year old, she had been counting down the days, not just for opening presents on Christmas morning, but to a day filled with spending time with family, since she missed out on so much the month before while being in the hospital.  I spoke to her doctor, who realized how important this holiday could be for our family, and she said that we could give her some pain medication to hold her over until morning, but to come in as soon as we were done.  She also said that if the pain got worse, or she had any other symptoms, to come in immediately.  

     So I said to Hazel, "Honey, I will do whatever you want.  If you want to stay here, and fight through the pain, I will go wherever I need to, to get you the pain medication you need.  But the second you want to go to the hospital, you tell me."  So she fought through the pain, barely being able to open her presents, but happy to visit with everyone.  But by 3:00pm Christmas Day, we both agreed that it was time to go to the hospital.

     Considering her experience in November, her doctors opted for a direct admission this time, rather than our usual ER visit, then admission.  Continuous IV pain medication was started immediately, because at that point, my poor sweet girl could scarcely even move.  Scans that were meant to be done after New Years, were pushed up, and even more intricate ones were ordered.

     As each day in that first week here passed, I felt like I was living my very own version of the movie "Groundhog Day".  It was like we were re-living the same hospital stay we had in November.  Hazel experienced the same symptoms, and the same protocol was initiated.  Then, other complications began to come up, just as they had in November, and I was scared senseless that we were going to experience the same hell that we did then. Thankfully, everyone was aware of what happened last time, and we all worked very hard to try and keep ahead of everything.

     It took quite a few days to get a handle on managing Hazel's pain, but we certainly got to it more quickly than last time, so I was thankful.  But the same fears I had two months ago, were eating away at me once again.  I thought for sure, this time, the pain meant Hazel's cancer had progressed.  

     First, her CT results came in, and my fears were realized when the doctors told us that there has been progression in her tumors.  But he tried to assure us, that so far, it had appeared to be small, and slow growing progression.  But it looked as though this new progression was now threatening Hazel's spinal canal at an alarming rate, and they were concerned that if we did not stop it immediately, that the tumor growth could cause permanent neurological damage.  So an MRI was ordered for that very night.

     The MRI came back with a very clear picture of progress of her tumors, and the one near her spine was now wrapping itself around the spine, trying desperately to break in, and even compressing several nerves between her T-11 and T-12 vertebrates.  Thankfully, however, it has not yet invaded the canal (funny how bad news can become good news in this messed up world of childhood cancer), and she is currently not in danger of permanent damage.  This gave us a chance to make a treatment plan, as it wasn't as emergent as we thought it would be.

     She also had the painful bone marrow biopsies performed as well, which thankfully came back clear.  But this left her hips sore for many days.

     Hazel's PET/CT came back, affirming the progression, and also lighting up very bright in her tumors, indicating that it is still very active disease.  It also showed that because of their placement near her diaphragm and lungs, she was developing a pleural effusion (fluid build up around the lungs), just as she did in November.  

     Gosh, these tumors are greedy little suckers, aren't they?!

     We tried to stay ahead of it, but it progressed rapidly, and before we knew it, her entire left lung was affected, and she needed to have around the clock oxygen for the better part of a day.  So, instead of just watching it, and draining it if need be, our little Hazelnut had to have a chest tube placed, in addition to everything else she was going through. To date, it has drained nearly 700ml of fluid!

  

     After much discussion and deliberation, Hazel's oncologist and we decided on a treatment plan.  Radiation was to be started as soon as possible, to try and stop the tumor around her spine in its tracks, and chemo was to be started immediately.  Which chemo, though was the question.  We had two choices, one was to go back to what worked for her last year (two types of chemo + the ALK inhibitor) and would be tough but tolerable on her body, or a protocol called ICE.  ICE consists of three different chemotherapies (Ifosfamide, Carboplatin and Etoposide), which are all very strong and very brutal drugs.  They are given inpatient, and you usually stay until you recover, because they need to watch your side effects very closely.  I have known a few children who have done the protocol, and it was no picnic, so the thought of doing this scared me.  But I also want this cancer gone, once and for all, and maybe that's what it would take.

     I wish the answer was easy.  I wish, like many well-meaning people have messaged me, that cannabis, ketogenic diets, carrot juice, vitamin therapy, essential oils, etc.  would be the cure to my daughter's cancer.  Believe me, we have tried these things, with the hope for a cure!  But her cancer keeps coming back.  It keeps getting smarter, and stronger, and it has figured out ways to get around every single thing we have thrown at it.  The possibility that this beast can take our daughter is becoming more real with every second that passes, and it rips my heart out that we haven't found the thing to save her yet.

     However, even with the knowledge that these protocols may not be the answer for Hazel, we do have hope that they can give us more time to try and find it.  Her doctor and I both believe that the right protocol for now, is what got Hazel to remission last year.  We both felt that if we tried the ICE protocol, and it hit Hazel to hard and caused irreversible side effects, it would not be fair to Hazel and we would never forgive ourselves for not trying the "easier" protocol first.  So she started that regimen last week, and completed the 5 day course already.  She seems to be tolerating pretty well for now, but her counts have dropped to nothing, and she has already needed blood and platelet transfusions.  Her platelet level got so low, that she started getting a bloody nose yesterday, and we could not stop it for well over an hour.  So much blood ended up in her stomach, that she coughed up clots three separate times.

     Hazel also completes her 5 day course of radiation tomorrow.  The radiologist has said that he has already seen a decrease in the swelling of her tumors, which has been reaffirmed to us these past couple of days, as Hazel's pain seems to be getting better.  So much better, in fact, that she is off the continuous pain medications and on an oral nerve pain medication only.  She felt good enough to even have an impromptu dance party with her nurses, complete with a disco ball. 

     Despite the struggles with my faith lately, I can only believe that it has been God and your prayers that has sustained our family. My husband Aaron has had to act like a single Dad since Christmas, taking care of four children, a home and a job.  He even has made time to come and visit us when he can.  My other children are worried for their sister, and miss us terribly.  They now have to go back to school this week, as if life were normal.  Yet, somehow, they keep going. We have had to ask so much of Hazel these past weeks, and it has been hard on her.  But God continues to lift her up and helping her push through. On the days where she has cried out, "I can't do this!  I wish I never had cancer! This is the worst thing to ever happen to me!", she somehow still manages to gather enough courage to do what needs to be done.  Logically, a six year old girl would not usually be able to face these kinds of things.  Most of the time, they cannot even face the monsters that they believe are hiding under their beds.  Yet Hazel fights this very real, and very scary monster every single day, and it is all she has ever known.  So, for me, that only points to a divine strength that must have been gifted to her.  

     Yes, I still struggle with the thoughts of "How could God allow something like this?" or "Why would God let these children suffer?".  But I also know, that cancer is not FROM HIM.  It is a product of living in a broken world.  But it is hard still to understand.  Bitterness and anger are comfortable when walking this path, and I am trying so desperately to see the light.  So when I see Hazel, and my four other children, being so brave and strong through all of this, it helps me to see that light, even if only for a moment.

     If you are still with me here, at the end of this lengthy post, thank you.  I ask you now to keep praying.  Pray for the good kind of progress.  We want to see something finally nail this thing, and we want to go home.