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! 




Wednesday, February 22, 2017

Scan Results

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


     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



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

     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!!