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:





5 comments:

  1. That's wonderful that she is doing so well! My son is on his 2nd Stem Cell transplant tomorrow.

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  2. Tears of joy for you!! I am so glad things are working out! I pray for Hazel and all of you often!!

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  4. I'm so happy to hear that Hazel is doing so well and that you're doing better! :) Wonderful about the fundraiser! I hope Hazel's scans on the 30th go well and that it's good news! Thank you for the update. :)

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