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As many of you likely saw on Facebook, our little Hazelnut spiked a fever and we were admitted to the hospital last Wednesday evening. This has become a usual pattern with this new treatment, making it very difficult for our family to feel any sense of routine. Thankfully, and I believe because of all of your prayers and support, Hazel felt better than any other visit! Although she did end up contracting C-DIFF once again, she has been powering through and her spirits remain high. She has done so well, in fact, that her counts began to recover faster than ever and we were actually discharged yesterday evening!!! Now we are home, helping her continue to recover, and we start her next round of chemo on January 30th. After this upcoming roound, she will repeat her scans to see if this treatment, and all of the integrative therapies we do at home, continue to shrink these tumors! Tentatively, these scans are slated to happen around February 21st or 22nd.
Now, I do not think it is an accident that our dear girl did better than any other round after receiving our recent hopeful news with the last scans. I have come to realize that HOPE has played, and continues to play an extremely important and pivotal role in Hazel's journey on this arduous road. And to be honest, HOPE is something I have had a difficult time holding onto since her relapse.
I want to take this opportunity to be totally transparent with you. If I choose not to be, I do Hazel, and every other family like ours, an extreme disservice. These children, who are fighting for their lives every day, receiving treatment that is far too toxic for their little bodies, and only get a measly 4% of our national cancer budget, have earned the right for me, and everyone else for that matter, to be completely and wholly honest with the world.
Throughout our fight with childhood cancer, I have had to figure out how to manage a lifelong involvment with depression. Through faith, and HOPE, I was able to manage it fairly well throughout Hazel's first fight with cancer, only having some small dips in the road, but it still being ever-present. Toward the end of treatment and continuing through her 2 1/2 years of clear scans, PTSD reared its ugly head and exacerbated the already underlying depression.
While I should have been at my most joyful, my most thankful, my most hopeful; I had times where I struggled to get out of bed in the morning. And the fear of cancer coming back and tearing my daughter, my family and myself apart once more, was something so palpable, I could hold it in my hands and feel it's effect wash over me like a tidal wave.
I found that giving back to the world of childhood cancer became my purpose, my passion, my therapy. It helped to be able to pull up my boot straps and give cancer a tangible kick in the face by making the world aware of it's hideousness and by raising money to help annihilate it, once and for all.
When Hazel's cancer returned, I was not prepared (but really, who is?)
I walked into those routine scans, with a smidge of confidence for the very first time.
Hazel was stronger and healthier than ever!
Those scans must have been someone else's.
Hazel was 2 1/2 years in the clear, she had to still be clear!
We had invited employees of St. Baldrick's to join us at our appointment to get the good news, and just filmed a video for them celebrating her milestone.
Unfortunately, it was real. It was not a dream, but it was one of my very worst nightmares.
Hazel's cancer was, indeed, back again.
I have been intimately aware of the realities of relapsed Neuroblastoma, losing many friends to it, and fighting it with all I had. So when the news of her relapse became more real with each day, my hope and faith drifted farther and farther away, bottoming out to an all time low.
Facing each treatment felt like I was being pulled deeper and deeper underwater, away from any sign of a rescue boat. The only thing that kept me from drowning was watching how unbelievably brave my daughter, the real champion in this fight, was being while fighting this beast a second time. If she can do this, so can I. But the reality of potentially losing my beautiful, precious baby girl to this monster has been inescapable.
Hazel's follow up scans came during the first treatment we tried. A treatment that was described to me as "the closest thing to a home run in the relapsed Neuroblastoma world". This treatment was the very first semblance of hope that I had since her relapse, so when the scans showed her tumors still progressing while on it, my very little hope was completely shattered.
Switching gears to a therapy that was more targeted for Hazel seemed like the right, and even more hopeful thing to do, but instead of being filled with HOPE, I remained filled with trepidation. I walked into those next set of scans, right before Christmas, hopeless, and begging God to just "show up".
Boy did He! Not only was this treatment working, but our little Hazelnut's tumors showed a significant response! Some are dying, some shrank more than 50%, and I finally felt like we had a fighting chance in this battle. For the first time in months and months, I FELT MY HOPE RESTORED!
This hope ripped a hole in the heavy, dark cloud above my head, and I finally felt the warmth of the sunshine fall upon my face.
I could take a deep breath without heaving.
I could hug my daughter without sobbing.
I could answer the question "How are you?" with an honest "Pretty good!"
So when I say I do not think it was an accident that Hazel recovered this round better than ever, I think it is because it is in direct correlation to me being filled with HOPE once again. I think she could sense a renewed spirit within me, and she herself could be renewed. And I wholeheartedly believe that God knew we all needed a little bit of HOPE, and time home together, and helped her body heal in this miraculous way.
While I found some HOPE to finally hold onto, I still ask for you to pray for me. Pray that I may be helped in my unbelief and doubt. Pray that I can be open and willing to talk about my depression, so I can be led on a path to overcome it. And pray, that despite all of these things, I can remain steadfast and strong for the one who needs me the most; my little Hazelnut.
