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

Journal Entery PEACE
March 25, 20201 (Thursday)

It’s been a good, good day. I felt calm and at PEACE all day. I enjoyed a day at home getting things checked off our to-do list. I had a fun morning with Grant while our kids were at school…perks of Grant working only 3 days a week. It was the first time in a long time that I completed a full hour workout. My body is healing just enough that I finally feel ready to move my body…Praise God! I was so worn out and feeling very dizzy but ended the workout with a 20-minute restorative yoga…every workout should end like this! Felt so good to move, lift, stretch and end with healing the mind, body, and soul. This is a huge step in the right direction… a huge win today!

Grant and I then ventured out BEEfore picking up Crosbee from school. When out and about the other day a picture in the far back corner of the story drew me in…I went in looking for something specific but went straight to the picture that was speaking to me. I stood there for a bit reading it and just felt moved. I knew it had a perfect place in the basement but it wasn’t cheap so had to run it by the boss first =). A few days have gone by and this picture just kept coming up…it made a huge impression on me, brought about so much thought. After measuring we knew it was meant for our newly refinished basement. It is so silly that one picture can bring so much emotion in me, move me, make my heart smile, give that comforting feeling of PEACE. I say that but it's just like reading verses in the Bible. At certain times or during certain situations verses speak to me, teach me, comfort me, guide me. The book I am currently reading titled, Good Grief, I’m Healed by Suzanne Grimaud is powerful especially during this season in my life. This book is a comfort, validating my feelings and helping me to make sense of my current struggles. So…I guess it’s not so crazy what this picture does to/for me. 

PEACE sign with quotes/sayings from many influential people has moved me, brought about emotions, healing and PEACE and it now hangs in our basement as a reminder of the times. The sayings speak to me, more some than others but what it stands for right now in this specific time in our lives is what gives me chills. 2020 for all has been a time of many unexpected hardships. For our family, it has been a time of heartbreak, loss, change, misunderstandings, fear, challenges, and more. For months my family has had to find their way while their mom/wife searched for healing and PEACE from an attack mentally from panic and anxiety. Our lives were once again turned upside down. I’m a stay-at-home mom that was unable to do my job. I am still healing and finding my way but through it all, I have clung to God’s hope, his promise! I stayed close to Him to find comfort and PEACE as my war raged on. My prayers were many for PEACE…PEACE for my family, PEACE for myself, PEACE for my friends, PEACE for our community, PEACE for our country, and PEACE for our world. As it seems for many of us and most everything is chaos, falling apart. Riots, murders, rallies, racism, suicides, depression, all at an all-time high! What this world needs most is the PEACE that only God can provide. I truly BEElieve this. This kind of PEACE is not that of the world but can only BEE felt when you are in a relationship with God, have fully and completely surrendered to Him…everything…not some things, sometimes…all things, all the time. I’m still learning (probably will BEE for all my life) and God has to remind me especially during times of anxiety, panic, and self-doubt. In these times I want to control and change my thoughts and feelings. What I have learned through my stronger than ever relationship with God is that when I call out in prayer, spend time in His Word, and lay all my concerns and worries at His feet is when He provides PEACE. He does this through other people (angles on Earth), through His Word, and his silent whispers and nudges. For the first time in my life, I feel God speaking to me. He has even answered questions I’ve asked through prayers. I can honestly say I’m so thankful for the war that raged in my head and body BEEcause it was a time God used to grow closer to me, renew me, teach me and mold me. The war isn’t completely over but I’m standing stronger each day and can finally breathe. I’m back mostly full-time at the best job in the world…BEEing a mom. I am blessed to see all God has done for me. I’m healing and finding PEACE. Now more than ever I want to help others and BEE lead by God to serve His plan and purpose for my life. So…this picture that now hangs in our basement isn’t just any picture…it will forever speak to me. We recently finished our basement during this crazy time of uncertainty that 2020 brought and during my battle/my war. Our family has always wanted the space of a basement. It’s the main reason we moved from “Henley’s” house. This space means so much to each of us…it’s a dream come true (it was always a dream/wish of Grant and mine to BEE able to provide this space for our kids). It’s no coincidence that the basement was completed and gave our family (especially Cooper) a new space to gather. The basement has brought us PEACE during my battle. So many blessings during the storm. God is so good. He always provides. This space will forever remind us of God’s goodness and the PEACE that can BEE found through BEEing in a relationship with Him. Oh, and of course the picture has “hidden” blue butterflies 🦋 that were not discovered until hanging it. Also, there were two perfect spots to add our personal BEE touch to some of the quotes/sayings. One saying reads…BEE sure to wear some flowers in your hair 💙. Something Henley never left the house without…her flower headband. I will forever cherish this piece. It may have more meaning to me than others but I BEElieve it to be a gift. A gift of hope, life, future, light, God’s PEACE, dreams come true, love, and many HapBEEily ever afters! I am blessed! I love and praise You, God!
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