Monday, November 13, 2017

What is "normal"?


"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.

Tuesday, October 31, 2017

Scan Results 10/31/2017

You guys, I don't even know what to say right now, so I just am going to get right to it....

Our little Hazelnut has relapsed again.

To say we are devastated that she relapsed so quickly out of treatment, would be a gross understatement.  But this is the reality of childhood cancer.

Childhood cancer does not discriminate.

Childhood cancer is relentless.

Childhood cancer takes childhoods.

Childhood cancer is murderous.

We knew that this would be a possibility, because once a child relapses with Neuroblastoma, the likelihood of it recurring becomes very high, upwards of 80%.  So it isn't that surprising, but it is still a punch to the gut.

You always hope that it will be your child that will be the odds.  Your child that will not be one of the statistics.  Your child that will beat this thing. 

But the reality is, cancer doesn't care who your child is, how strong they are, or how many people they have surrounding them in prayer and support.

As of right now, we are still waiting for test results to determine the extent of her relapse, and we are going to perform some more tests next week to get a bigger picture of what is going on, so I will keep you updated.

The good news, is that this recurrence, as it is right now, is not urgent.  We were not asked to drop everything and begin treating it immediately.  We have time to study it, and make the best plan we can.  And we have one of the best Neuroblastoma doctors on our side.  Hazel's oncologist, Dr. Marachelian, is not only an incredible physician, but she is also a leading researcher in the Neuroblastoma world, being crucial in some of the most recent advancements.

We will continue to do everything we can to save our daughter, and before anyone comes to me with messages of "miracle cures", please know that we have not left any stone unturned.  She is already using Cannabis Oil and essential oils, we follow an anti-cancer diet, and she takes all kinds of supplements and probiotics.  We still believe these can help her, but if they were going to save her, they would have done so already.

We just humbly ask that you stand by our family, holding us in your thoughts, hearts and prayers, as we try to make the best and some of the most difficult decisions we can for our little girl.

We still have Hope for Hazel, as she has beat this thing twice, and we can believe that she can do it again.  But please pray for our spirits, as it is so easy to lose hope, and to be overcome with fear and bitterness.  I have held onto some of that bitterness, and have even directed it toward God, so I beg you to please hold us up in prayer so that we may see His goodness, His peace, His love.

Until we have more answers next week, we get this week to spend time together as a family, building as many happy memories as we can.  We have not told the children yet, (please, if you see them, do not say anything) as we would like them to have a carefree Halloween.  Although, Hazel, who is too smart for her own good, does already know.  

In true Hazel fashion, she took the news unbelivably well.  She stood up determined, wiped her hands and said, "Okay."  Then on the way home she started jokingly yelling in anger, "Cancer, you get out!  I'm going to punch you and kick you out of there.  No!  I'm going to push so hard, that I'm going to poop you out.  No chemo, just poop you out!"  

She laughed and then said, "Okay, I'm making this too funny now".

I said, "No honey, absolutely not.  You make it as funny as you can.  The best thing we can do right now is stay positive and have hope.  So you make all the jokes you want to, my love."

Last night, I was reminded of something she said on Sunday while we were at the park celebrating my youngest son's 5th birthday.  She breathed in the crisp fall air, looked up to the sky and said, "The world is beautiful today".  And despite this news, my daughter is right, the world is beautiful today and we will hold onto that.

Tuesday, October 10, 2017

A Slice of Life

     Oh my goodness, how has it been 2 1/2 months since I last updated?!  For those of you who may have been worried, my apologies!  But for those of you who know me personally, know that I have not updated because we, as a family, have been absolutely reveling in the unexpected gift of "normal" life.

Most importantly, our little Hazelnut is doing great!  She has been off of chemo since our last update in July, and on her daily ALK Inhibitor medication, which has meant that her body has been recovering.  Her color is back, her hair is growing, she is gaining weight, and has been eating everything in sight. After barely eating anything for a year, I'm so thankful for that last one!  Also, her anxiety levels have lowered, and more and more each day, I have seen her joyful disposition return.  It has been so nice to see my girl again!

In the middle of August, Hazel began 1st grade.  All summer, she was very nervous, believing she would not be able to keep up with her friends, or that people would laugh at her because of her bald head.  But school has been nothing short of incredible!  She ha caught up faster than I though she would, and absolutely loves learning.  Her friends all love and adore her, many of them wearing their "Hope for Hazel" bracelets, and never once making her feel like an outsider.  

At the end of August, we hosted our annual Ever After Ball, benefiting the St. Baldrick's Foundation.  Last year, we raised a little over $50,000, and this year was even better!  WE RAISED $83,000 (and still counting)!!!  And because both Hazel and Zein Youssef (the young boy who we honored at our event, and is a fellow Neuroblastoma fighter) have battled Neuroblastoma, and the doctor we honored is the Medical Director for the New Approaches to Neuroblastoma Therapy (NANT) consortium, St. Baldrick's decided to gift all of our proceeds to NANT to ensure that all of that $83,000 goes to Neuroblastoma research!  What an amazing night it was!

In September, we had another incredible thing happen to our family, in the form of a much needed vacation, but I want to save that for another post.  It really came at such a good time though, because September, being Childhood Cancer Awareness Month, was much harder for me, emotionally, than I anticipated.  As many of you know, this last year I went into a very deep depression.  There were days where I spent much of it on the floor in a puddle of tears, and my brain was so overloaded, that there were many times where I couldn't even figure out how to do laundry, or even take a shower.  After many months of therapy, and medicinal and natural assistance, I am finally beginning to feel more like myself each day.  I can see the joy where I didn't see it before.  I can be positive in moments, when before, all I could see and feel was hopelessness.  But in my recovery, I have had many ups and downs, and September was filled with many down days.  I had to take it upon myself to remove social media from my life as much as I could.  The stories, the images, the friends who were suffering were just too much for me to take.  Of course, I felt guilty leaving those I love without my support. But what I realized, is that if anyone understands why I had to do what I had to do, it was these very families. They understand better than anyone, the intricacies and the depths of despair a parent of a child with cancer can feel.  So although I wish I could have stood by them in support and in raising awareness for childhood cancer this year, I also know that they get it...

With that, I would like to thank all of you who, in our absence, stood by us and continued to show your support.  It really has meant the world.  I hope I can continue to recover, along with Hazel, and we can keep all of our friends, families and supporters up to date.  

That being said, our most recent update includes what is upcoming for Hazel.  Her doctor wants to keep Hazel on her ALK inhibitor for as long as she can tolerate it, and as long as she stays NED.  We will continue to check in with the doctor every month, to make sure she is still doing well on it.  Then every three months, she will have scans.  Her next set of scans are actually already around the corner!  Her scans are scheduled for October 30th.

Since these are the first scans off chemo, I am very anxious.  Please keep her, and our family in your thoughts and prayers.  For now, I will leave you with a few photos of our beautiful, healthy looking girl:

Tuesday, July 25, 2017

Crucial Scans

     These past several weeks have been very busy, and sometimes very difficult for our family, so please forgive the lack of updates.  As you may have seen on our Facebook page, Hazel's second of three rounds that we hope to be the last, was pushed back due to her platelet count not recovering enough.  So her doctors and we decided that with her body being as tired as it is, she would not need to complete a third round, and instead pushed up her scans to TODAY!  

     If her scan results today come back clear (like we hope the last ones were), she can be finished with chemotherapy!  She will remain on her ALK Inhibitor medication at home for an indefinite amount of time, but the harsh, hospital visit requiring, adult strength chemotherapy no longer will have to be pumped through our daughter's veins!  So these scans are absolutely crucial and we beg you for your thoughts and prayers.

     For me, it is difficult to remain hopeful for these results, because the last time I felt hope, our world was shattered with the news of her relapse.  My depression and anxiety have also made it near impossible to see the light at the end of the tunnel, so I am personally, really relying on YOUR hopefulness and prayers, and that of my amazing family and friends to get me through.  The road of a cancer parent in arduous, long, and can make even the strongest of spirit fall to their knees in desperation. So if you know of anyone walking this road, don't be afraid to reach out out of fear of being an imposition, or not knowing what to say.  Let them know that, although you may not know what to do or what to say, you are here for them and you love them. And that despite their circumstances, you know that they are also a human being with emotions and needs that can be cared for.  Show up for them.  Love them. Pray for them.  Don't forget them in their long journey.  I can tell you for sure, they will be overwhelmingly grateful.

    As soon as I get results, I will post here to share them  with you, so be on the look out. Thank you all so much for your continued support for our daughter and for our family. We love you all!

Tuesday, May 30, 2017

A Ray of Hope

     In case you missed the video posted on our Facebook page, here is an update on Hazel's scan results:


     Hazel's doctors could not detect a single bit of cancer inside her little body, neither in her scans or her bone marrow biopsies, and boy are we thankful! 9 months ago, when our little Hazelnut relapsed, things looked very bleak and grim.  Statistics for relapsed Neuroblastoma are so bad, that we didn't even discuss them with her doctors.  And to be honest, there were many a night where Aaron and I collapsed in heaps of tears, thinking about the strong possibility that we may have to let our daughter go.
     When treatment began to work, I scarcely allowed myself to hope, knowing full well that Neuroblastoma is smart and tricky, and can mutate in a way to resist treatment that was once effective.  My deep depression and anxiety has made it very difficult for me to take a deep breath, to see any light, or feel any hope.  And when you feel hopeless, you feel helpless.  These last 9 months have truly been a hell that I would never wish upon anyone.

     But today is different.

     Today, there is light.

     Today, there is joy.

     Today, there is hope.

     Today, my daughter's body is rid of this disease, and we can take that deep breath, and keep on fighting.  While I still struggle with bitterness, exhaustion, fear, and anger; today it is a little bit easier to see through those feelings, and grab onto that hope that I have so longed for.

     After going over these results with her team, and knowing how Neuroblastoma cells like to hide out, dormant, ready to grown at any minute, we have all decided that it would be best to continue chemotherapy for another three cycles (5 day courses every 4 weeks), and scan again.  If these next scans are again clear, she can be finished with this harsh regimen and begin a maintenance therapy for an indefinite amount of time.

     We sit here now, in the infusion center, beginning what will hopefully be the first of the LAST three rounds of chemo, and I can't even begin to describe to you what it feels like to see a possible end to this part of our journey.  The fact that it is even remotely possible that Hazel could be in school in the fall, and that we would not be spending our days within these hospital walls, is an absolute miracle!  However, it is still difficult for me to grapple with the fact that this cancer life will be with us forever, whether it is with Hazel beating this beast once and for all and I live with the fear of it coming back, or that it indeed comes back for her to battle once again.  I long for the mundane, for the boring, for the normal.  I'm terrified to keep living this life, for fear what it might do to my daughter, my family, and myself.  But alas, this is our life, and I have to teach myself to choose to find the positives, to find the joy and to find the hope.  Please pray that we can keep learning how to do that, and that God may fill us with His peace that surpasses all understanding, as I know that we cannot fight this battle alone.


Friday, April 21, 2017

It Never Gets Easier...

     In this life of childhood cancer, it is very simple to make plans in our minds.  Plans to do the dishes or the laundry.  Plans to visit with friends.  Plans to get our kids in after school activities.  Plans to sit down an write an update.

     But following through on those plans....not so easy.  Forgetting to even attempt to follow through on those plans....super easy.  Feeling guilty for not being able to do them....even easier.

     A cancer parent's brain is filled with appointments, both planned and unplanned; (Hazel has had daily appointments for radiation for 12 weekdays straight, on top of follow-ups with doctors, unplanned blood draws and transfusions and unexpected ER visits); lab result numbers (a printed out page full of them); the most recent temperatures taken on a given day; schedules of the handfuls of daily medications that must be administered; thoughts on when the last time your child washed their hands or used hand sanitizer, or if you have enough of the numbing cream left in your medical supplies for the next time your child has to endure a port access, or if your child lost and gained any weight this week and ate enough healthy food to keep them strong; and fears about whether all of the hell you are going through is even going to be enough.

     Place all of this in the middle of a family of seven, each person with their own needs, desires, worries, and even health issues, and put it on the shoulders of parents just struggling to keep the tears from falling, their marriage together and their sanity intact, and it is no wonder that plans get changed, cancelled or forgotten.

     It has taken every single part of me just to get by these past weeks since my last update, that I can only focus on the victories that I got Hazel to her treatment, and my family fed and dressed for the day.  And two days ago, it marked 4 years since Hazel's initial diagnosis, and it made me realize how long we have been at this.

     We are tired.  We are weary.  Our faith is shaken.  Our brains are depleted.  And cancer just doesn't let up.  IT JUST NEVER GETS EASIER.

     But despite how weary we are, despite how sad we are, despite how scared we are, our little Hazelnut breaks through all of that with such strength, joy, courage and determination.  Since I last updated you, she took on two more rounds of chemo (at the reduced strength) and took it on remarkably well.  The side effects were far less overwhelming (she only vomited a few times and only spiked a fever once, sending us to hospital for a short two-day stay), so most of these last weeks she spent feeling well and in very high spirits.  She then had twelve doses of radiation, administered by some of her favorite nurses in the entire hospital.  The team makes this experience as enjoyable as possible (as much as you can for a child who has to lay perfectly still in a machine all alone), by playing music or movies, having "party lights" lighting up the whole room, a sticker chart to fill out, a treasure chest to pick out a prize each day, and just by having the most loving and joyful hearts.  Hazel actually would jump in excitement each day she knew she had radiation!  But although the treatment went really well, by the end of it, she was ready to be done.  It made her very tired, and by the end of each day, pretty nauseous.  The wear and tear of all of this treatment was showing on her little face.  I think, that despite being strong, and brave, and joyful, she is just as ready as we are for this all to be over.  

     Since August, it has been difficult to hold onto hope, knowing that we did not have any concrete treatment plans and had no end in sight.  And when you feel hopeless, you feel helpless.  Going through treatment like that is a very difficult way to live.  So when her last scans came back to positive, it felt like a breath of fresh air that we could finally take deep into our lungs.  However, as cancer treatment goes on, that breath escapes our lungs as quickly as it goes in, so it isn't always very easy to keep holding onto that hope.

     But we met with her doctor a few days ago, and will meet with her again next Monday, and she is still feeling very hopeful.  She believes that this treatment has been working, and will continue to work.  Her plan is to have Hazel get one more dose of this reduced strength chemo next week, and then do her scans sometime after that.  Her hope is that we will see clear scans and then we can start to move Hazel onto some form of maintenance treatment, which will be far less toxic on her little body.  She even hopes to have Hazel well enough to be back in school in the fall!  But even though he hope gives us hope, we all know that Neuroblastoma is a sneaky little devil, and finds ways to mutate and become resistant to treatment.  So these scans are still just as scary as any other.

     Please keep praying for our family.  We have been through seasons where God's presence was so evident in the journey we were walking, but right now it has become more and more difficult for us to remember His promises and to see His hand.  We want to be honest with that.  We don't want to hide.  We want it so that people going through the same thing will also not feel alone, or isolated or guilty.  We know we are not perfect, and we don't want to pretend to be.  But we will continue to ask for your prayers, in faith, so that we may be lifted up and begin to see the light and the hope once again.  Pray for our faith, pray for our children, pray for our marriage, and pray for our little Hazelnut.

Wednesday, March 1, 2017



     Our meeting with Hazel's medical team on Monday was great!  Her oncologist is thrilled to see the response her disease has had to this treatment, and is very optimistic for Hazel.  The remaining tumor is so small, and hardly lighting up, that she believes it is almost dead itself.  She does want to continue with chemo, until it is completely eradicated, but the good news is that she wants to reduce the strength and dosage of the chemo!  She is confident that a lesser dose will still take care of the remaining disease, and wants to give Hazel's body a break from all of this toxicity. The hope is that this lower dose will reduce her side effects, and not make her counts drop for so long.  So hopefully our little Hazelnut will be feeling better!  She also discussed the possibility of doing radiation, to blast that spot and to make sure we have killed every last cell.  This would happen sometime after this cycle, or the next one.  

     Hazel was supposed to start this next cycle of chemo just after our appointment, but her platelets were still not high enough to begin.  So the doctors decided to postpone chemo for another week, giving Hazel more time to recover.  At first, this made me nervous, because I did not want to give her cancer any wiggle room to grow, but now I am just so thankful.  We now have another whole week together as a family, with Hazel feeling well, and we really really needed this.  So we are going to take this time, savor it and enjoy it and start everything again next week!  Thank you for your continued prayers! 

Wednesday, February 22, 2017

Scan Results


     We got the email just this morning, from the doctor, with our little Hazelnut's scan results!  Here is what it said:

"The mass appears smaller!  Now measures 1.5 x 0.6 cm 
as compared to 2.1 x 1.0 cm.  We will review it in our NBL
meeting [a weekly meeting with CHLA's Neuroblastoma
medical professionals] tomorrow morning"

     As you may remember though, Hazel does not only have one mass, but three different masses.  So while I was elated at this news, I was curious as to why she did not have information on the other two.  I wrote back to her with my inquiry and she responded swiftly with:

"Nada.  No uptake to the other two areas!"

     You guys...Do you know what this means?!!  This means that the scan could not even detect the other two masses, likely meaning they have been obliterated!!  And the other one is not far behind!  What sweet music this was to my ears and my soul this morning!  God has blessed our doctors and our family with the hope of a recovery, and you have no idea how unbelievably good it feels!!!

     We meet with Hazel's team on Monday to discuss plans moving forward.  From what we have continued to discuss, we will likely keep on this regimen until we get completely clear scans, possibly more than once, and then move on to something less harsh.  But we won't know until Monday, what the exact plan will be.  For now, she is scheduled to begin her next round after her appointment on Monday, so please pray we get the rest of the week together and that she gets to have these days feeling well and feeling strong!!  Thank you all for your prayers!!

Saturday, February 18, 2017

A Quick Update


     From the bottom of my heart, thank you for your prayers and good thoughts these past couple of days.  Seeing you all rally around us was incredible and such a blessing of comfort and encouragement.  Something I forgot to share in my last post, which made leaving on Thursday evening even more difficult, that Friday the 17th was Hazel's big sister, Elizabeth's 8th birthday.  It tore my heart apart having to be separated and knowing that cancer was, once again, taking something away.  Well through the incredible devotion of my husband, who stayed home from work to make sure she had a great birthday, and through the grace and love of our community of family, friends and even strangers, Elizabeth had such a wonderful day!  Aaron and I were able to plan a scavenger hunt for her to find her present.  He took pictures of some clues in our home and emailed them to me, so I could text them to Elizabeth on Aaron's phone when she got home from school.  She just loved this!  And all throughout the day, people came by and brought her cupcakes, flowers, balloons and cards, many of which she knew came per Mommy's request, so she didn't feel like I forgot her. When I spoke to her last night, I asked her how her day was, and she replied with and enthusiastic, "GREAT!".  My Mommy heart felt such a swell of relief!
     As for our little Hazelnut, she woke up today, a brand new girl!  Her counts jumped up, her energy and appetite increased tremendously, and her spirits seemed to be headed back to her usual joy filled place.  On top of that, for the first time in four inpatient stays, we were finally taken off isolation!  Boy, what an amazing change it was to be able to go out of our room, and just take a walk!  We hardly spent any time back in our room today!  She was in the playroom, set up a tea party in the family lounge for us and her nurses, had a dance party and walked and walked and walked, of course with her and I donned with princess tiaras and fairy wands and blasting music from her iPad, just spreading joy wherever she went.  It was so good for my soul to finally see her this way.  It helps remind me that it is true that "weeping may stay through the night; but rejoicing come with the morning" (Psalm 30:5).

     She's  actually felt so well, that they discharged us at midnight, tonight ! So we got to go home! 

More post after these photos:

     While she was feeling well, this stay has still been difficult.  Not because of how she was feeling, but because what cancer does to every family.  We saw and heard many things this stay, that reminded me of why I fight so hard for more awareness and for a cure!  As we walked the halls, we saw families breaking down in tears, just outside their child's room, likely from a new diagnosis, or facing the end.  We met another family, who's child just received a diagnosis that is considered terminal, a word not uncommon out of the mouths of many childhood cancer families (this should just not be so!).  And right next door, is this beautiful 1 year old baby, who unfortunately has been entirely alone our whole stay thus far.  As an added difficulty, she has been on isolation, so she cannot be held by the nurses as they do their charting, and has been stuck sitting in her crib, day in and day out, all alone.  As I hear her cry, and no nurse is around to comfort her, my heart shatters in a million pieces, thinking about how she just wants to be held and loved, and does not know why no one is there.  Hazel and I have spent much of our time in her doorway, singing her songs, playing peek-a-boo, waving hi, and doing whatever we can to show her some love and bring her joy.  It is moments like this that make me so incredibly grateful for the support system we have.  I see, so often, how much Hazel needs me for her care and even just for her comfort, but thankfully, there has never been a time where she has been left alone for extended periods of time.  But some families do not have the kind of support we have.  Some come from other states, or even other countries, for treatment, and have no one to help.  Some are single parents, or have to work several jobs to make ends meet, or have other children at home who have no one to take care of them, and since the child in the hospital has a wonderful medical team to take care of them, those families have to make the impossible decision to leave that child alone while fulfilling the other responsibilities that need to be met.  

     So as you pray for for us, please pray for the families who are struggling through this journey, some on much more difficult paths as we.  They need a community like ours to help carry them through.  So if you know of another family in your community, please reach out to them.  Or find local childhood cancer charities in your area, and they can direct you to how you can help!  Help these families know they are not alone!!

Friday, February 17, 2017



     Unpredictability is the name of the game when you have a child with cancer, and yesterday was no exception.

     Only a day after updating you all that we were home and Hazel improving, things swiftly changed.  For most of the day yesterday, our little Hazelnut just did not seem much like herself.  She did not eat very much, and complained of being unusually tired, especially when she had to get up and move.  While not uncommon, I definitely felt that something may be up.  She also was bruising all over, which indicated to me that she was in need of platelets.  Nurse Cyndi, our home nurse, came to draw labs in the morning, and I was expecting a phone call telling us to come Friday for platelets, but was surprised when the hospital called and said her white count and hemoglobin had also dropped again.  They said that I could just keep a watch on her though, and we would assess her when we came in for the transfusion the next day.
     Not even an hour later, I went to hug her, and felt her burning up!  So I took her temperature and she was at 101.4.  When I called the nurse, they told me that we would need to come into the ER immediately, and plan to stay.  Needless to say, she and I were very frustrated with these turn of events.  But, truthfully, I was more panicked then frustrated.  Hazel has never spiked a second fever after her counts dropping and rising after chemo.  So to me, this fever signaled that something could be seriously wrong.  Coupled with the fact that Hazel crashed pretty hard after this phone call, falling asleep on the stairs while I was packing, I was terrified.
     Our other children, upon hearing that we would have to leave again after only being home for a couple of days, were utterly heartbroken.  Sobbing and clinging to my dress and extremities, they begged us not to leave.  It was so difficult to try and explain how potentially dangerous this fever could be, without frightening them, and about why it was so important for us to get to the hospital to treat it.  All they knew, was we were leaving again, and they would have to just keep dealing with these changes and adjustments.  Cancer is so hard on the whole family....
     Once arriving in the ER, around 7:30 last night, we were quickly admitted and, of course her fever had dropped.  But because she spiked at all, it is required to be admitted until her blood cultures show that she is clear of infection (results take 48 hours).  It was also time to access her port.  Hazel was so angry, scared, and tired at this point, that she was clawing her way out of my arms, screaming at the top of her lungs.  After about 15 minutes of holding her tight and helping her through her emotions, she amazed us all by getting herself ready, taking some deep breaths and counting to 3 for her pokes.  She simply astounds me.
    They were able to start antibiotics and fluids right away, and sent off for her platelets.  In the time we were waiting for the nurse to return, she began vomiting uncontrollably and did not stop for about 30 minutes.  Halfway through this time, she also needed to use the restroom, having diarrhea as well.  As she was in the restroom, vomiting and on the toilet at the same time, she was so tired and was falling asleep between retching as I held her up in a sitting position.  After a dose of Benadryl to help control her nausea, she fell asleep and did not vomit again.  We were admitted to the floor and settled in our room at 2:30 this morning, and were absolutely bone-tired.  
    Thankfully, she was able to sleep right on through the night, and woke up feeling much better.  She is still very nauseous, and not really eating, but the vomiting has been controlled, so I am grateful for that.  Her hemoglobin was low again, so they gave her blood this afternoon, which definitely seemed to perk her up. But her white blood cell counts dropped again this morning, so there is no sign of us being able to go home anytime soon.
     Her bone marrow biopsies and scans are scheduled for Monday and Tuesday, so we may still be here for those, but if we miraculously get discharged before then, we will head back down both days.  Please be praying for these results.  I truly believe all of this is because the level of toxicity in her body is reaching a point that she is having a much harder time recovering and is simply not tolerating it anymore, so good scan results could mean seeing an end to all of this.  And please, let me kindly ask, for no comments telling us that we are poisoning our daughter with chemo, and that some miracle plant of food will cure her cancer.  Please believe me when I say, we do not make these decisions for her treatment lightly.  It isn't easy seeing our daughter this way, but we are doing everything we can. We follow as close to a ketogenic diet as we can, keeping out sugar and processed foods; we use several detox techniques, have her on a full and strict regimen of Cannabis Oil, probitoics and supplements; use essential oils daily, and so much more.  Even knowing how wonderful, and successful all of these things are, Neuroblastoma is a vicious, and smart beast.  We truly believe that her life not only depends on these natural therapies, but also on working in conjunction with the best that western medicine has to offer.  So please know, we are doing everything we can, and these decisions are not easy, and unless you are in our shoes, you cannot make them for us.  That being said, I so appreciate and am humbled by your hearts of concern and all the support and prayers you have all given our family. It lifts us up in these difficult, and sometimes dark times, and I truly could not get through these days without it.

Wednesday, February 15, 2017

Another Round Complete


     Let me begin by saying how humbled I am by the outpouring of support, love and encouragement I received after my last post on hope.  It felt so heartening to know that my honesty and transparency about my own struggles was something that not only spoke to you and brought about awareness for the lives that families with a child with cancer live, but also brought encouragement to those of you who may struggle with the same things.  So thank you, from the bottom of my heart.
     Second, I apologize for not posting here sooner, but since our last post, our lives got very overwhelming, with some positive and some more challenging things.  We spent time celebrating and savoring Hazel's birthday!  We went to Disneyland with our family, hosted a birthday party (combined with her big sister Elizabeth, whose birthday is very close) and were the grateful recipients of a special Unicorn Party put on by the amazing foundation Create A Smile (a product of the love and devotion of a fellow cancer fighting family, The Youssef Family, to other children fighting this disease).  

     Unfortunately, in the midst of all the blessings and fun, our whole family developed very bad colds, including Hazel.  And, for me, it turned into one of the worst flus of my life.  We were dealing with illnesses for the better part of two weeks, and boy I was exhausted!
     Not long after recovering, and with Hazel and I still affected by a lingering cough, we began her fourth round of chemo.  We had to be down at the hospital (45-90 minutes away, depending on traffic), every morning by 8:00am, and stay for several hours while the infusion was completed.  We were able to have the weekend at home, but come Monday morning, Hazel was extremely run down and spiked a really high fever.  We rushed back to the hospital and were admitted.  Her white blood cell counts were absolutely zero, so she was extremely neutropenic and fighting a fever.  So antibiotics were begun to protect her from anything life threatening.  The challenge with these antibiotics, is they cause her severe diarrhea and cramping, and quite a bit more nausea.  The last two inpatient stays, her gut was so upturned, that she developed C-DIFF, which had to be treated with more antibiotics that made her equally nauseous. Thankfully, this stay, she DID NOT DEVELOP C-DIFF!!!  We were able to break the vicious cycle, if only for one cycle!  So thank you for all of your prayers, because they are clearly working!  Thank you God, for giving our daughter a reprieve!  
     Although she did not develop C-DIFF, she did still have some pretty significant diarrhea.  I spent most of those first days helping her through her discomfort and encouraging her as she would tell me, through tears, "I just want to be done feeling like this!"  When the urgent diarrhea stopped, she then developed a profuse bloody nose, that lasted throughout much of an afternoon. Not only was this terribly frightening for her, but the clots that developed after, slipped down her throat, making her gag a vomit them back up.  She found it increasingly more difficult to cope, and it just broke my heart.  Thankfully, over the next several days she felt better and better, and we were able to return home very late Sunday night.  To say we are exhausted would be an understatement!

     Clearly, these treatments, and subsequent inpatient stays have really begun to take their toll on our little Hazelnut.  Because she has been so nauseated and vomiting almost daily (sometimes, several times a day), it has made it difficult for her to keep weight on.  As her counts keep getting knocked down to nothing, she barely has time to recover in time for the next round.  She is so tired and unsettled from the constant traveling and changing in schedules, and is becoming more and more frustrated with not feeling well.  Despite her challenges though, God has blessed her with a spirit of bravery and perseverance that has carried her through each day and each challenge.  She faces each treatment and hospital stay without complaint, she breathes deeply through every single poke, and she even spends time reassuring me (for example: "Mom, it's ok if I throw up, because I always feel so much better afterwards").  
     Her perseverance inspires me every day, and brings me so much hope.  I am reminded of the bible verse  Romans 5:3-5 "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.