Henley Hazel’s Story

Site created on August 16, 2010

Thank you for coming here to support Henley Hazel (Henney Bee), Grant, Lynsey, Cooper and our immediate family. We have created this website to keep friends and family updated. 

Start by reading My Story. You can also visit the latest journal entries and write us a note in our guestbook. You may also follow our journey with lots of pictures at 
http://henleyhazelsjourney.shutterfly.com.  Feel free to send emails to beebrave15@yahoo.com. 

Please note that donations made to CaringBridge in the Tribute website section will go to help CaringBridge maintain this website. 

Henley Hazel was diagnosed on August 8, 2010 with Stage IV Neuroblastoma, a malignant tumor that developed in her adrenal gland and spread to other areas of her body. It's a rare childhood cancer that requires intensive treatment. She was admitted to Riley North at Indiana University North in Carmel, IN. We are facing a new and challenging period in our lives. Our days are like a roller coaster; we go up and we go down. During the treatments, Henley has remained strong. Our family has been blessed with much love and support. We also know that God is our refuge and strength, always ready to help in times of trouble. We pray each day that God blesses Henley with strength when she is in pain; blesses her with patience when she is confused; and helps her hear His voice in her dreams and in her heart. We understand that our Lord is a healer of spirits and of bodies. We enjoy the days that Henley smiles and giggles. We also understand that it is going to take a long time for this treatment to be completed. Henley participated in a clinical trial that included six courses of chemotherapy. She had surgery by Dr. Laquaglia at Sloan Kettering hospital in New York. After finishing her chemotherapy treatments we were ready to move onto stem cell transplant. Unfortunately, Henley's last scans before treatment showed she still had some involvement in her bone marrow. At this point in her treatment we transferred her care to Sloan in New York. They recommended a round of high-dose chemotherapy to get her in complete remission and then move onto antibody treatment. She did the seventh round of chemotherapy and we were elated to find out on February 23rd that our daughter had no evidence of disease in her scans. We began the difficult task of traveling back and forth to New York for radiation and antibody treatment in March of 2011. We were on the right track until we got devastating news. After scans and an MRI they found that Henley had relapsed in the brain. They found eight spots in the scan and our world changed again. She received treatment for the brain and CNS disease...brain surgery, 2 rounds of chemotherapy, 17 radiation treatments and an antibody to the CNS...8H9. This treatment required long stays in New York and many visits to the hospital. After completing the treatment Henley was doing great and her first scans post treatment showed no evidence of disease (NED)! We then underwent some more difficult antibody treatment which were followed by scans. We were very discouraged to discover that she had relapsed for the second time. The scans showed a new spot in her hip and several of the spots in her brain were growing. We then did two aggressive rounds of high dose chemotherapy treatment with stem cell rescues (giving back her own stem cells to help build her immunity...stem cell transplants) in hopes of shrinking the disease in the CNS and hip. After completing these rounds we did scans which showed the hip responded to the treatment but the brain did not. We were then out of options in New York and decided to transfer her care to Dr. Sholler in Michigan. We are currently on a new study which is aimed at shrinking Henley's brain tumors and we are hoping to help get Henley back to NED...Nifurtinox. We are amazed everyday by the strength and courage our Brave Bee shows. We have learned that cancer is going from one day to another; it is endless treatments; it is nausea; it is learning a whole new medical language; it is testing our limits; it is becoming closer to family and friends; it is a builder of strength; it is not sweating the small stuff and being glad for simple pleasures; it is seeing the world; it is believing in miracles; it is knowing anything is possible; it is not giving up hope; and it is staying in touch with God. We have already been showered with much love and support. We appreciate all of your thoughts and prayers. We are blessed to have so many friends that are doing wonderful things for us. We are truly thankful for all of you!!All we ask is that everyone take a moment out of your busy day and just say a prayer for Henley. We want to thank everyone who visits this site. You all mean a great deal to us. Now more than ever we need your support.Henney is being very brave. 'Bee'-Lieve! Keep those prayers coming. Love to all, Henley, Cooper, Lynsey and Grant

Henley Earned her angel wings on July 19, 2013.  She endured 3 years of non-stop treatment.  Her body was tired.  We miss her dearly but know we will see her again!  Thank you for the continued love and support!

Henley, you are our angel, our darling, our star...and our love will find you, wherever you are!  

Always BEElieving!

Bravebee.org

Newest Update

Journal entry by Henley Romine

Since my last post, I have had to commit most of my energy to heal…emotionally and mentally mainly. This season of life has been extremely trying. It is a battle like one that I have never experienced. It isn’t one that I can fight through, change, forget about, or burry, it isn’t one that I can pray away. What it is…it’s life-changing, extremely trying, testing me in every way, it is tiring and can bee completely debilitating and one that I would never wish upon anyone. I have been at my worst many days and then other days able to take a deep breath just to prepare for what’s to come…more unbearable days. This season has taken a huge toll on me, my family, and all those who have supported me. After months of anxiety, panic attacks, irritability, severe depression, body sensations, sleepless nights, and tracking my cycle and emotions/sensations on a calendar I have been diagnosed with PMDD. You see…all those symptoms don’t last all month/every day. It is all dependent on my cycle and what my hormones are doing at that particular time. They describe it like my body has an allergic reaction to the ups and downs of my hormone fluctuations. At first, I didn’t care about the label…I am not that label and I will figure out a way to live hapBEEily with or without it. But as the months went on I have found comfort in knowing that I’m not going crazy and this is a real diagnosis. There is nothing I did to cause these emotions/sensations. Even though there are days I feel completely crazy this diagnosis has given me a reason for my symptoms. I will continue to have hope and search for ways to support my hormones and emotions. I will work on healing the things that I can and lay what I can’t at God’s feet. I will continue to trust and BEElieve that tomorrow will bring better days. It’s a journey and I will hold on to God’s promises BEEcause that is where I find my hope. 

I am not sharing this with you for sympathy but rather to provide hope. I think so many of us, especially in today's times, are struggling to make sense of our emotions and our feelings. They are uncomfortable and embarrassing, they make us feel guilty or even unworthy. Instead of feeling them, we find ways to bury them, hide them from the world and even ourselves. I have tried this but it has never gotten me very far. In fact, doing this has only lead me to a deeper darker hole. My hope is that if I share my story, my journey, that I can help you too find hope, peace, and God’s unwavering love even in the middle of the storm. If you followed our story when Henley was sick or even shortly after it wasn’t always pretty, in fact, devastating at times but with that said we never lost hope and we continued to strive to find peace, comfort, and fun with the time we were given. 

I would love to share a revelation I had today. It is one that has empowered me. I have had a great day…thanks to where I am in my cycle. My mind was clear and able to process big things. I’m so thankful for today’s discoveries. I pray that maybee they provide you with hope and comfort. We are in this together. 

Journal entry from Monday, January 25, 2021, Day 7 in my cycle:

I slept pretty well last night. I had some anxiety but last night was the first time in a while that I didn’t have to get up, turn on lights and implement strategies to calm myself. Yeah for a big win! Thank you, God!

I had counseling just a bit ago. Stephanie has me realizing how high of standards I hold myself to, how hard I am on myself, and how I really need to give myself grace and accept that I can’t do anything to change the way I am when PMDD takes hold. She has made me think about it like having cancer or diabetes. We can manage the symptoms, try to heal but we can’t change that we have it no matter what we do. Accepting that will help the healing journey. When she puts it like that I agree, but then I so don’t want to accept this…no part of it. But neither did we want to accept the fact that our daughter had a very aggressive cancer covering her whole body or the fact that we would lose her at the age of 4 1/2. No one that has cancer or diabetes or heart disease or the list goes on and on…wants it to BEE their reality, yet just BEEcause we don’t want to accept it doesn’t mean it isn’t there. I would change it if I could but I can’t, I’ve tried! So even though I want nothing to do with it I can accept that I have this and give myself grace when times are bad. I can't beat myself up or feel selfish, or have a burden of guilt for those hard times BEEcause just like any other illness, there are some unbearable times. I will work really hard to accept BEEcause this will help me not feel so guilty and allow myself some grace. This can only help the symptoms. Writing it out seems so much easier than finding acceptance. God, I ask that you speak this truth to me so that it helps me heal. I like the way this sounds. It sounds wonderful and freeing to not BEE so hard on myself. To not feel guilty when I’m feeling bad. Freeing to BEE me…the good, the bad, the ugly. ME! Me finding love for myself, Me finding confidence, Me trusting God with EVERYTHING, ALL THINGS! Me Not holding myself to unachievable standards. Me not feeling guilty for needing something from myself or from someone else. Me trusting myself enough to know that my thoughts and feelings are just that. They don’t define me. They aren’t me. They will come and go and so will the good feelings, the truth. This, This feels free! Free from the prison I have BEEn living in. Know how to truthfully BEElieve and put each of these into practice. God, that’s where I need You to keep guiding me and speaking Your peace and truth into me. I’m so hopeful God! I love and praise You, Amen.

We also talked about managing vs. controlling. It is ok to try and seek solutions and manage the things that we can but I can’t control the hormones, the symptoms that cause my thoughts and feelings. I can try and manage the hormone ups and downs but I can’t control that they do that and when they do that or how my body responds when they do that. 

When in a massive panic attack I can’t control how my body reacts. I can try and support my body but can’t control it… the same with my feelings and thoughts. I can’t control when they come or what they are telling me but I can do my best to speak the truth to them, ignore them, acknowledge them and that may or may not help/change them but I can’t control or make it stop. That’s always been so hard for me. God, please help me acknowledge this, BEElieve this, feel this especially in the midst of the worst. I ask this in Your name, Amen. 

This rollercoaster that I’m on has brought a lot of the same feelings I had with Henley. Just like with Henley, we were on a rollercoaster that we didn’t choose to board, and one of the worst parts…we couldn’t get off. No matter what we did. No doctor, No medicine, No love, No faith, No kind act, No good time, No bad time…nothing in our power could BEE done to get us all off the rollercoaster. We were prisoners, trapped, no going back. We were captive. This has resurfaced for me now. All those feelings, fears, unknowns, questions are there. I’m on the rollercoaster that no matter what I do I can’t get off. I’m captive and a prisoner once again on a rollercoaster that I never chose to board. And just like with Henley, the support is there, the unwavering love is there, the search for a cure is there but in the end, we are still stuck on this damn rollercoaster. That’s powerful and not in a comforting way. Those feelings bring much pain, fear, anxiety, panic. Knowing this connection makes sense and brings about light. Maybee this enlightenment is part of the healing. Maybee it will help me give myself some grace. Maybee it’s God’s plan for me to know it, share it, BEE it. It’s in times like these we discover ourselves. 

After counseling, I did a mediation. Mediation has helped me calm my mind and recenter. Something that was said really spoke to me…You don’t have to BEE strong! It is within softening that you will find freedom. WOW! That is the complete opposite of what I have been trying to do all these years! BEE strong! BEE brave! But it is within softening that you allow yourself to really feel, really give yourself grace, really BEE yourself, really BEE gently and love yourself, really heal. During the meditation, I was asked if just like seeing, hearing, tasting, smelling am I just as thankful for feeling? Think about that?! Sure…some of the time. The times of love, fun, excitement, in all the good…yes! I’m so thankful to feel these heartwarming feelings. Most things I'm thankful I can touch and feel…absolutely! But am I thankful I can feel the negative thoughts, the panic attacks, the anxiety, the stress, the body sensations that all the pain causes, the tiredness, the depression, all the physical, mental, emotional, spiritual pain unwanted feelings cause?…NO would bee my first reaction to the question. Am I thankful for the sense of feeling? When I feel all the negative feelings I first want to run or suppress those feelings. I obsess over how I can get rid of them, not feel them. I use many strategies to try and calm, change my feelings. No, I’m never thankful and actually fear some feelings. I’ve never thought about this question. What if I’ve been doing it all wrong all this time? Just like BEEing thankful for all I can see, smell, taste, hear…what if I was thankful for all that I can feel…including the good and the bad?! If I was thankful maybee then they wouldn’t cause so much fear or take such a hold of me?! Maybee feelings wouldn’t determine my mood?! Maybee I could find more of a balance?! What if I allowed myself some grace to feel those icky feelings?! What if I didn’t fight them so much?! What if I opened up just a little and didn’t put up such a fight to remove them?! This honestly is one of my biggest daily battles within myself. What if I could acknowledge, accept and allow myself to open up enough to feel those feelings then maybee they wouldn’t BEEcome so scary?! And if they weren’t so scary they wouldn’t have such a hold and control over my whole BEEing. Maybee, just maybee this is freedom?! Maybee BEEing thankful doesn’t mean for just some of the feelings but all of them. BEEcause by BEEing thankful for the good and the ugly, it’s there that I grow, I discover and I find freedom. I will BEElieve! God, together I pray for this. And thankful for this discovery. God thank you for not giving up on me, for constantly leading me, and for loving me. I’m so thankful for our relationship. Together we will heal. I BEElieve. 

After each daily journal entry, I do a Bible study. BEEing in the word helps me when the enemy invades. I can fight them with bible verses, the truth of God. God has used bible verses to speak directly to me. Speaking life, love, comfort, and strength into me during times of need. I have so many examples and look forward to sharing many with you. Today was no different. After writing and discovering so much today this verse was part of my bible study…Isaiah 55:6-7. It says…Seek the Lord while He may bee found, call on Him while He is near. Turn to our God for He will forgive generously. Pursue…God, Justice, mercy, humility, compassion, relationships. God’s love is like the ocean, you can see it BEEgin but not its end…His love for me is NEVER ending. Accepting God’s ways means I’m willing to accept His motivations…making His glory known…to know and reflect. This is exactly what I am doing =). Thanks for the reassurance God! Romans 12:1-2 also spoke to me today…Let God transform you into a new person by changing the way you think. Then you will BEEgin to learn God’s will for you, which is good and pleasing and perfect. Philippians 4:8-9…Fix your thoughts on what is true, noble, honorable, right, pure, lovely, admirable, the best, not the worst, the BEEautiful, not the ugly, things to praise, not to curse. God of peace will BEE with you. My hope is that through focusing on God and his word I will BEE able to change my thoughts and BEEcome new. Colossians 3:1-2…If you’re serious about living this new resurrection life with Christ, act like it! Pursue the things over which Christ presides. Don’t shuffle around, eyes on the ground, absorb with the things right in front of you. Look up, and BEE alert to what is going on around Christ - That’s where the action is. See things from His perspective. 2Timonthy 1:5-7…For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline. He wants us not to BEE shy with His gifts, but bold and loving and sensible. I hope that my gift of sharing helps others. James 4:7-10 Humble yourself before God. Resist the devil. Let God work His will in you. Yell, NO to the devil, and watch him scamper. Come close to God and He will come close to you. Humble yourself BEEfore the Lord, and He will lift you up in Honor. 

I want nothing more than to continue to write about my journey if it helps others. I’m hapBEE to BEE an open book if it brings others closer to God or helps in your own healing. This journey would not BEE possible without each other. When one starts talking and sharing many others can relate, offer support, ideas and together we help each other. That is my hope. I don’t know where this will lead and not sure Henley’s Caringbridge or Facebook is the right platform but it’s all I know. It is how we reached the masses when Henley was sick. I’m open to ideas. I know nothing about blogging and have only read a few. So here goes nothing…I will share as long as I’m helping others. This is never about feeling bad for me or wanting sympathy, please know that. We all have a story and battles in our lives. Your battle is significant and worthy. We are all just trying our best in a very broken world. Sharing Henley’s story touched so many and if I can now share some of mine and help just one person I have followed God’s lead. 

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