Two Years Later...

Two years. 

It has been two long years since my daughter took her last breath in my arms.

Two years since I held those beautiful hands.

Two years since I smelled her stinky chemo breath.

Two years since her laugh echoed through the house.

Two years since I got to hear her say, "I love you, Mommy."

It was early in the morning on March 30, 2018––Good Friday––when I knew my daughter, Hazel's, time on this earth was coming to an end. 

She was fighting neuroblastoma––a tumor based cancer that affects a child's sympathetic nervous system and is found in about 700 children every year in the US––for the third time.

There is currently no known cure for relapsed neuroblastoma, but that didn't stop us from fighting. Hazel had already beat relapsed neuroblastoma once, and she was gearing up to start a new and promising clinical trial.

Her spirits were up, despite the constant pain from her tumor and she was ready to fight. 

She was ready to try the next treatment in hopes of a normal childhood.

Although, finding Hazel filled with hope wasn't unusual.

She had a way about her. She made us all believe in something bigger than ourselves and helped remind us what was important in life––love, laughter and hope.

She had scans scheduled for the first week of April. Frequent disease evaluation is critical when treating children with aggressive cancers. 

She was tired, but not any more tired than usual.

And she had a cough. A cough that just wouldn't quit.

And one day in late March, just a week before her scans, Hazel spiked a fever––which in the childhood cancer world means automatic hospital admission.

We arrived on Monday, with an X-Ray determining Hazel's cough had developed into pneumonia. 

Pneumonia made me nervous, as it could be lethal for an immunocompromised kid, but Hazel's white blood cell counts were up and I knew that she could likely fight the infection.

On Tuesday, her oxygen levels were improving. The doctors believed the antibiotics must have been working and that we should be back home by the end of the week.

But even though her stats were improving, her pain was unrelenting and getting worse.

Hazel's oncologist wanted to take advantage of the upcoming scans and decided to move them up to get a better look at what was going on. 

Late Tuesday night, when the hospital was still, Hazel lay in her hospital bed and was rolled down to the CT machine. 

Lifting her onto the exam table was a struggle. 

Not only was it painful for her, but she was connected to countless wires and tubes––a common sight for childhood cancer fighters, but still cumbersome.

Wednesday morning, Hazel's oncologist called and asked for my husband to come to the hospital to go over the results of the scan.

We knew this meant bad news, but we weren't giving up the fight.

Not yet.

Not now.

Not after five years of fighting.

And last scan showed we still had time.

What her doctor told us in the family meeting room that day was something I wasn't prepared for.

No matter how many statistics you know––no matter how many children you watch lose their lives––no matter how much suffering you see your own child go through––nothing prepares you for the words that followed:

"Hazel's lungs are not affected with pneumonia. What the X-Ray showed as infection is, in fact, extensive disease. Her tumors have grown and are consuming her lungs. It is beyond what is treatable and there is nothing left for us to do. We are so so sorry."

The feeling of desperation, overwhelming grief and powerlessness is something I wouldn't wish on even the worst of humanity.

I asked how long we would have left with our girl, and the doctor told us we had "about a week, maybe two."

But it was Friday, only two days later, that Hazel was gone.

Hazel spent her last two days with her pain better managed than ever before, surrounded by family, friends and all of the staff at the hospital who grew to love our daughter during her fiver year battle.

She was groggy but awake––talking and laughing.

She kept saying, "I don't want to sleep because I don't want to miss the party."

We decided only to tell Hazel what she wanted to know. We didn't want her last days spent in fear. If she had questions, we would answer them, but we did not spell out everything for her. We thought we had more time to figure it out.

What we did do was make sure to let Hazel know that if she was done fighting, it was okay. Okay, not only to be done fighting, but okay to finally rest.

What transpired over those two days taught me more about life and death than anything I had ever experienced before...or since.

Hazel drifted in and out of sleep, talking to us every step of the way. 

She spoke of butterflies, puppies and kittens. She even spoke of a dog lost long ago to cancer.

She sang songs of her own creation that seemed to come from the very depths of her soul.

She told everyone: "Daddy needs lessons in listening!" "I'm Hazel the hater. I hate all of this going on!" "The butterfly came back to us because it missed us, but now it's home where it belongs."

Throughout the night on Thursday, Hazel's lungs were working harder and harder. She held her oxygen tube close to her face for comfort. Each cough made her more and more tired.

At 5:00 in the morning, her oxygen levels had dropped and were showing no signs of recovering. We called our immediate family, and they were at our sides with our other children within an hour.

Our home hospital, Children's Hospital Los Angeles, was understanding, supportive and loving during this time. The staff had brought in an extra bed so Hazel could be cuddled by her siblings and parents, all at once. 

By six in the morning, it was quiet and still. Hazel finally found some peaceful sleep and we all slept beside her for the next hour. 

It was beautiful.

Around 7:40 Friday morning, Hazel's siblings were all down in the cafeteria eating breakfast, and it was becoming clearer that she had mere moments left.

We called for them, asking if they wanted to be in the room to say goodbye. As hard as that decision was, each and every one of them said yes. 

Hazel rested in my arms as her brothers and sister told her how much they loved her and that they would never forget her.

She heaved a heavy breath and with her eyes closed, her body relaxed and her hands holding her Daddy's, she said, "Wait, am I dying?"

I said, "Yes, sweetie. You are."

She replied, "I'm a little scared."

Aaron said, "It's okay, Hazelnut. Just know that God is right there waiting for you."

And I said, "Yes, and we are all right here with you. We love you and you will be okay and cancer-free."

She slowly smiled, took her last breath and said, "Byyyyyeeee."

With that goodbye, her heart stopped, her lungs stopped taking in air, and our Hazel slipped to the other side of eternity.

Even writing this words today, I am trembling with tears filling my eyes.

No seven-year-old should have to face this moment.

She deserved to live.

But she also deserved a life without fear, without chemo and pokes, without cancer.

And she has that now. She will never be touched by the monster we call neuroblastoma again.

Although two years have passed, Hazel's last days are as clear to me today as the day they happened. 

The pain of losing her is just as great.

The amount I miss her has only grown.

I struggle with bitterness and confusion every single day.

Half the time, it is hard for me to even believe she existed in the first place.

Her absence is just so great.

But somehow, with each passing day, I am coping. I am growing. I am living.

I am trying to hold fast to the signs that abound and to the beauty that life still has to offer.

Just as I did during Hazel's treatment, I am learning so much from her––in ways I never even knew possible.

My hope and my prayer is that these lessons will take root in my soul and keep me close to her––reminding me that she is not gone, but waiting for me. 

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.  

 

What is "normal"?

LONG UPDATE AHEAD

"Normal" for a cancer family becomes a very relative term. "Normal" can mean vomiting every day or not pooping for many of them.  "Normal" can mean rushing out for random food requests at 1:00 in the morning, and wiping sweat from a sleeping brow. And in"normal" even bad news can seem like good news.

This week in the hospital has been filled with many things that all the doctors and nurses are calling "normal", but it has been no where close to the normal that we want.  In fact, some of this week has been utterly traumatizing, if I'm being completely honest.

If you have not seen on our Instagram or Facebook pages, Hazel began to experience some pain in her back, near her tumor site, after only a day discovering her relapse.  By last Saturday, her pain was unbearable and unmanageable.  We were prescribed an oral pain medication, in hopes of handling it at home, but it came nowhere near touching it.  Sunday morning, after a completely sleepless night, Hazel vomited and was barely able to move.  The doctor requested that we bring her in for assessment in the ER.

While in the ER, Hazel has two doses of IV morphine, and still was in so much pain.  It was terrible to watch.  All I could do that would bring her any comfort, was hold her in my arms, trying to take the pressure off her back, and rock her side to side. Since her pain was clearly not able to be managed, we were admitted by that afternoon.

Hazel was put on a continuous drip of morphine, and it took us several days to find a dose high enough to make her comfortable, but even then, she was having breakthrough pain, and itchiness as a side-effect from the medication which just added to her discomfort.

One of the biggest concerns was that the pain was caused by the tumor growing, and possibly compressing her spinal column.  Monday, she was scheduled for an MRI, with sedation, to get a closer look at her spine, however, just as we were, most uncomfortably, getting in the wheel chair, I felt Hazel was burning up.  We took her temperature, and her fever was above 103℉.  For fear that this was caused by an infection in her port, the doctors did not feel safe pushing a bunch of sedation medication through her line, possibly spreading that infection to the rest of her body.  She had already not been eating all day in preparation for this scan, and being told that at 3:00pm it was all for nothing, was pretty devastating for a six year old girl.

But since her pain was still so great, they did not want to push the scan back, and asked if she would be willing to try it awake.  She has done many of her scans awake, so after some anxiety reducing conversation, she finally agreed to do it.  However, it wasn't until after 9:00pm that they finally could take us down, and the waiting wasn't good for her already high anxiety.

We got down to the machine, and the sounds and enclosed space made Hazel absolutely terrified.  They had noise cancelling headphones, and VR goggles to watch a movie, but nothing helped.  They put her in for only a minute, and she screamed in panic.  I asked if there was any way that I could sit on the bed with her, holding her hand, and the technician said the only way I could do it, was if I laid at her feet.  So, up I went, stomach down on the bed, arms above my head, holding her hands, and we went in that MRI machine together.  90 minutes together was better than 90 minutes alone.  I told her that I have always been by her side, and that we have been through so much together, that this would be no different.  We would get through it together like we've always done.  She cried a few more times, but held still enough that they only had to repeat one image capture!

Tuesday, we seemed to have a better handle on her pain, but she was already scheduled for her tumor and bone marrow biopsies, so it was going to be another day with a procedure.  Another day of anxiety. Another day of Hazel's "normal".  Since she was now on antibiotics for the possible infection, they felt safe to sedate her for this procedure.  It went smoothly, but she woke up in even more pain than before, I suspect because we aggravated the tumor and the needle pokes cause a lot of soreness, and became angry with what seemed to be the whole world.

She would say, "This is the worst thing to ever happen to me!  I hate this, I hate this!  I wish this never happened!  I just want to be a normal girl, and never have cancer.  I can't keep doing this!  Nothing is helping, and nothing is ever going to help!"

I can't even begin to describe to you the helplessness I felt in these moments.  All of the fears and frustrations I have had for her these last four years, and thankfully have been able to keep away from her, were all coming down on her at once.  The possibility of her cancer growing was becoming very real to her this last week, and there was nothing I could do or say to take that fear away, because I was fearing the same things.  All I could do was tell her that it was okay to get angry, to kick and scream, to cry and to be afraid, but that she should know we have the BEST Neuroblastoma doctor by our side, fighting with us, and we have a lot of different medicines that we could keep trying.  I promised her that I would never leave her side and that we would at least figure out how to manage this pain, it just was taking longer than we wanted it to. 

Most nights this week, Hazel has not even wanted me to sleep outside her own bed, and has been nervous when I step out, even just for a moment.  So even though I couldn't take her pain or fears away, I was glad that she felt comforted in my love and in my arms.

Wednesday, she had to have one more scan, to determine if her tumor is MIBG avid.  To Hazel, it didn't matter that it was important for us to do this so we could find the right treatment for her, it just mattered that she had to go through something else.  She was afraid of laying flat on her back, due to her pain, and didn't think she could hold still.  And if you know Hazel, once she gets stuck in a thought, it is not easy to get her out of it.  She spent almost the entirety of the two hour scan, crying, but to my amazement, still holding still enough to get all the images we needed.  We were both exhausted, frustrated and broken, but her resiliency and bravery kept me going.  I stroked her new hair growing in, and told her stories, sang her songs, and help distract and comfort her the best way that I could.

I was so nervous waiting for these results, but thankfully we got them sooner than later. The MRI showed no growth in the spine (thank GOD!), but the tumor seemed to be grabbing on the bone. However, this was not enough to be causing the kind of pain she was experiencing.  The MIBG/CT scan showed that, like her last relapse, her tumor is not MIBG avid, thus closing off one potential treatment, but that's okay, because it's not the only option.  The CT portion of the scan showed two things.  First, it showed that her tumor had not really grown that much in size since her scan on the 30th.  

This whole past week, I thought I was literally watching cancer eat my daughter alive as it was causing her so much agony.  So the fact that it hadn't grown, and hadn't spread felt like a ridiculously giant, cartoon, ACME anvil was lifted off my chest.  The pain, while awful, was not caused because the cancer was too quick for us, and it allowed me to feel safer taking some time to make decisions about her treatment moving forward.

Second, the CT showed something new. Hazel's lungs seemed to have a build up of fluid that was not present on any of the previous scans.  So, yet another CT, this time with contrast, was scheduled so we could get a better look.  It was supposed to be scheduled for Thursday, but in the middle of the night Wednesday, Hazel's oxygen levels began to drop, and we were sent down to an emergency CT at 2:00 in the morning.  The CT room that we were in was the  same room that she had her very first scan at Children's Hospital back in 2013.  And just like that first diagnosis time, Hazel has been in pain, having fevers, has been exhausted, been sweating like crazy (as you can see in the picture below) and was falling asleep during the scan.  Maybe it was the fact that I was sleep deprived, coupled with the fact that so many of her symptoms and our experiences were mirroring what we have already been through, but I felt like I was transported back in time and was living in the twilight zone.  My brain just did not know how to cope. My dreams, at this point, were feeling more real than the nightmare of a week we were living.

The CT showed that Hazel had a pleural effusion (fluid in the space around her lungs) in both lungs, but it wasn't clear what was causing it.  It could have been an infection, but the scan showed no signs of pneumonia.  It also could have been the tumor pushing into that space, making fluid leak easily.  OR it could have been that the tumor itself was growing into the lung space.  Something I don't think I shared, was that this tumor is located up between her diaphragm and lungs, wrapping itself around the aorta and growing roots that are attaching itself to everything it can.  It's grabbed onto one of her ribs and her spine, although not infiltrating them or any organs yet.  But it is in a precarious position and can cause a lot of issues if we aren't careful.  At this point, I'm calling her tumor a greedy little bugger.

Because the CT scan did not give us clear enough answers, and she spent much of Thursday needing an oxygen mask on her pillow, next to her face, she had to be sedated, once again, on Friday for another needle poke, in order to pull out the fluid to test it for infection and/or tumor cells.  While in there, the doctor decided to just remove the fluid from that lung he was testing, and ended up pulling about 200cc of fluid!  Thankfully, this seemed to help Hazel a lot because she no longer needed oxygen for the rest of Friday and all of the day Saturday.

During all of this time, Hazel's pain was still not managed, so the palliative care team was called in.  I know that "palliative care" is a scary term, but they are not only called in for patients needing end of life care but are called in for any and all patients in need of extra pain support.  My friend Melissa, another cancer mom on the floor, and who has been such an unbelievable support this last week, suggested that maybe they need a new name for when they are dealing with patients like Hazel, so as not to scare off the parents.  When I met with them, I felt for the first time that there was someone who was understanding Hazel's pain and knew exactly what needed to be done to help her.

The plan was set that Hazel was to go onto oral Methadone, instead of the continuous drip of pain medication she was receiving. Methadone is longer lasting, and does not usually have major breakthrough pain episodes, like she had been having this week.  Plus, since it was oral, if we could find the right dosing, we could eventually go home and continue treating her pain, instead of being stuck inpatient.  We slowly transitioned her over, and weaned her off the continuous IV med, leaving the pump on, if she needed to push the button for pain control. 

The first two days on Methadone were great!  I felt like we finally were ahead of her pain, and she was sleeping soundly at night, and feeling more like herself during the day, even getting up to play and be silly.  Plus, the soreness from the biopsy sites were finally fading, so I am sure that helped as well.  This is when Hazel's oncologist and I began to discuss treatment options for her tumor.  

When Hazel first relapsed, our goal was to get her on a new clinical trial, with a newly developed ALK inhibitor called Lorlatinib.  As you may remember, Hazel's cancer has a mutation of the ALK gene, which is thought to drive cancer growth.  These inhibitors target that mutation, and treat the tumor with much less toxicity than chemo and radiation.  It was the ALK inhibitor, Crizotininb, paired with two different types of chemo that finally got Hazel into remission during her last relapse.  We discontinued the chemo in July, and kept her on the inhibitor (which is a daily pill), in hopes that we could keep the cancer at bay, and give Hazel's body a chance to strengthen and be off of chemo.  However, it was on this medication that he tumor grew. 

This new ALK inhibitor, Lorlatinib, is much more promising thatn the Crizotinib, and was performing better on its own than the Crizotinib did when paired with chemo.  One article I read said that the lab results were showing "unparalleled responses" and causing mice to go into "rapid and sustained regression."  So we have a lot of hope for this trial.  However, since her rapid deterioration in just five days post her initial scan on the 30th, we were not sure that we were going to be able to make it to the start date for the trail, which is Tuesday Novemeber 14th, because it was just giving her tumor more time to wreak havoc. If we found that we did not feel it was safe to wait, we were going to push the trial back, and start high dose chemo immediately.

However, by Saturday, Hazel seemed much improved, and we both felt comfortable holding the chemo off, unless anything changed.  Dr. Marachelian also discovered what she thought was finally the answer to what was causing Hazel's pain.  She read about a phenomenon that happens with patients who's tumors only partially respond to the ALK inhibitor, Crizotinib.  It was like her tumor was a car that was driving down hill, and the inhibitor was the brakes, keeping it from growing/driving out of control.  Once the Crizotinib was discontinued on Halloween, something called a "tumor flare" occured, and it was like the brakes were lifted and the car shot down the hill at break-neck speed.

These "tumor flares" cause a lot of problems, but problems that are usually temporary. So the hope is that the fluid in her lungs will begin to disappear as the flare settles down, and that her pain will subside and she can be taken off the pain meds.  So please pray that this is the case!

(I hope you are still hanging in there, I know this update is long!  It speaks to the eternity that this week has felt like for me!)

Saturday evening, I was feeling pretty good.  Hazel's pain was controlled, I was coming off a good night's sleep from Friday night, and it looked like we could start the trial on Tuesday, and begin talking about going home!  At 9:00pm, Hazel's nurse came into the room to give her the next dose of Methadone, and I came over to her bed to wake her up, only to find that it was extremely difficult to do so.  She could open her eyes for a moment, maybe answer a question or two, and then her eyes would cross or roll back into her head, and she would be out again.  At first, I found it funny, but after a few minutes, my heart began pounding, as she was getting harder and harder to wake up.  I was shaking her, patting her face, tickling her, putting ice packs on her, and nothing was working.  I felt like I was facing the moment that we have spent the last four years fighting to avoid.

Then, the worst thing happened.  Her heart rate plummeted, and her respirations slowed so much so, that many times she even stopped breathing.  We had to rush everyone in the room, put her on oxygen and administer an emergency dose of Narcan (what they give to patients when they overdose on drugs). Narcan blocks the pain receptors in your brain, thus reversing the affect of Methadone in her system.  The team believed that the Methadone, since it is long lasting and can build up, was over sedating Hazel to the point of respiratory distress.  The Narcan did its job and woke Hazel, but she woke in a very traumatizing way.  She was screaming in pain, mostly in her head, and her heart rate skyrocketed.  She immediately needed to use the bathroom, and then began to uncontrollably shiver.  Eventually she drifted back to sleep in my arms, and continued to breathe safely the rest of the night.  Needless to say, I did not sleep very much.

My body was a mess that night, and I felt so broken.  I hadn't really had a break down all week, being in fight mode, but there was no avoiding this one.  I just fell apart.  I begged God to never let Hazel, or myself experience that again.  

They had decided to hold the Methadone dose overnight, and then restart it at a lower dose Sunday morning.  She had a wonderful Sunday.  The best I had seen her all week.  She was finally eating, albeit still very little, was laughing, dancing and playing, and said that she had zero pain.  I thought we were finally coming to the other side of the very dark tunnel we had been in.  

But then, around 5:00pm, I couldn't wake her again, and she spiraled down into the same symptoms she had the night before, not breathing, and needing a dose of the terror inducing Narcan.  And it didn't only happen once, but it happened twice.  The thing I had prayed to never experience again had now happened three times.  We both felt so overwhelmed and afraid.  Hazel didn't want me to leave her side, and asked me to sleep in her bed and hold her hand. I stayed up, constantly watching the monitor, hoping I would not see the trend begin again.  In the middle of the night, the decision was made that all Methadone would be discontinued, and she would use the pain medicine pump connected to her line until we figured out what to do for her pain.

Today however, her pain has not returned, and she has not needed to push the button once!  So our hope is that the "tumor flare" is no longer flaring, and has made the pain subside.  Either that, or there is still Methadone in her system.  We are going to watch her closely over the next few days, and if her pain returns, we will try something else.  Never again will I give her Methadone, that's for sure.

Despite having a very good, cheerful and pain free day, she spent most of it asking all of us if she would ever need "that medicine that made her head hurt" again, watched her own monitor closely and worry if she saw any sign of a dip (she is sometimes too smart for her own good), and afraid to go to sleep because "she felt like she would die if she stopped breathing again."  How do you comfort a six year old child, afraid she is going to die in her sleep, when you are fearing the same thing?  How do you help them find the rest they so desperately need?  I feel like her: It's not fair!  I wish this never happened!  She doesn't deserve this!

This should not be her "normal".  Celebrating little tumor growth should not be "normal". Being glad that she is breathing after respiratory distress from a medication meant to help her should not be "normal".  Being happy to see our hospital family because we are inpatient should not be "normal".  The fact that we survived enough days to make it to a clinical trial tomorrow, that we are hopeful about but do not know if it will work, is good news, is not "normal". Having childhood cancer should not be "normal".

As I am sure you can tell, I have really struggled through this week.  I have felt angry, terrified, bitter, exhausted, worn down, defeated and so so sad.  But I have tried to, everyday, hang onto any glimmer of hope I have for Hazel.  Hope in this new clinical trial.  Hope that her biopsy results will come back with information that will be helpful to us in her treatment.  Hopeful that God has her in the palm of His hands, and loves me despite my bitterness.  When my children are angry at me, do I turn away and abandon them? No!  I do everything I can to reconcile and to show them how much I love them.  My FATHER is no different.  Please pray that I can remember that, that I can feel that, and that I can hold onto that.