Monday, November 13, 2017

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.



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:

NO EVIDENCE OF DISEASE!!!!!

     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

Postponement

     TO HELP OUR FAMILY, JOIN HAZEL'S CARE COMMUNITY BY GOING              TO Here to Serve AND FILL OUT THE REGISTRATION FORM


     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!