Henley Romine

Henley1210x670








Henley Romine

Design Flourish

Henley Romine

toparrow




Henley…I will never forget the day that you picked what BEEcame our new favorite book… “Wherever You Are My Love Will Find You” by Nancy Tillman.

Scroll to bottom to hear it read by Lynsey

The story starts a few days BEEfore…

This day is so fresh in my memory. You woke up whining…unlike you lately. See, life had been better than great. Henley…you had been feeling the best you had since you were diagnosed at just 18 months. As the morning passed your walk had me worried. You had this limp and it kept getting worse through the morning until you just wanted to bee held. I remember just crying out to God…this can’t bee disease. Henley has been so active lately even trying to ride on her bicycle that has sat in our garage for over a year. She must have just hit her leg. Yes, that had to bee it. God please let that bee it! We called Daddy and he reassured me that you must have hurt your leg somehow but agreed I should take her to the doctor just to get her looked at. Feeling sick to my stomach I called Nana for support. Like always Nana dropped everything to bee right by our side. Shortly we were at Riley in the comfort of our home away from home with our loving doctors and nurses. We had spent so much time with them that I could tell by their faces as they examined Henley that they didn’t like what they were finding. The doctor wasn’t going to speculate at this point but ordered an X-ray to make sure that you hadn’t broken a bone. Taking many deep breaths as I remember anxiety creeping up Nana, you and me got onto the elevator to travel down to the first floor where you would wait for an X-ray to rule out a fracture. My anxiety only intensified as the elevator came to an abrupt stop and didn’t open…for a very short minute we were stuck on that elevator. Nana and I couldn’t help but laugh. I knew if I didn’t laugh I would bee crying. I remember waiting to bee called back and you perked up a bit. You wanted to play with the little house they had in the radiology waiting room. I had to hold your hand because you weren’t stable on your feet due to pain but like always you were determined. You played with a smile on your face.


Henley_b1


June 19, 2013 Pray, Pray, Pray!!!

We don’t know how to begin, really to put today in words or have the energy to try tonight. Right now we are feeling defeated, scared, frustrated, mad, sad, and very overwhelmed. After spending the day at Riley with her amazing team they believe Henley has progression of disease. Henley has been feeling amazing but the last couple of days her walking has become different. Today she woke up crying in pain. Her leg is really bothering her…enough to where she doesn’t want to really walk on it. We spent much of the day in communication with Henley’s team in Michigan and with Henley’s team at Riley. It has been decided to not take Henley to Michigan tomorrow for her weekly treatment. We will do a full workup…MIBG scan, MRI, Bone Marrows and Urines as early as we can in Michigan. Unfortunately the earliest they can do the scans are next Thursday. So now we wait for an entire week scared out of our minds. What does this mean for our precious daughter? What does this mean for our lives? So many unknowns! We are sick to our stomachs!

Mommy and Daddy were supposed to leave for their 10 year anniversary trip to Playa del Carmen, Mexico early Friday morning. It looks like we will not be going to celebrate. We are sad and know we need this time together but will use this time that Daddy has off work to enjoy being together as a family. We may just have to take a little family getaway!

This is going to be a hard week for our entire family as we wait. Please pray that whatever is causing Henley so much pain is NOT disease!!! We do the best to live each day and we will do the best to continue that!

The last weeks have felt like we are living a dream. It has been the best dream ever. We feel like we have our family back. We have been enjoying the “normal” life. We haven’t taken one minute for granted! Please God don’t wake us from our perfect dream!!!!!!

Thanks Nana for being there for us today!!! We love you!

We also ask for prayers for Lynsey’s Grandma. She has been in the hospital. We pray for answers and that she feels better soon! We love you so much Grandma!!!

I replayed that day many times. I really just couldn’t understand. It was just days before that you were perfect, better than ever. Life was good, no great! I remember going to clinic just to have labs checked. We saw your doctor as you were running down the hallway. You said a quick hello and frolicked down the long hallway. Your doctor was in awe and commented on how amazing you looked and acted. I remember looking him in the eye and saying, “I feel like we are living a dream and I pray that we don’t get woken up!” Of course not only did the doctor and passing nurses comment on how great you looked but just like always they admired your stylish outfit. How in just days was everything crashing down around us? How Henley? What sticks out most about that day is when we were driving home. I knew…my mommy instinct knew. As we were driving home we heard sirens and had to pull over. It wasn’t for a fire truck or an ambulance or a police car zooming by but for a funeral procession. That is when I knew that God was calling you home…not today but this was the beginning of the end of your fight. This was God’s way of telling me. I can’t explain it. I looked at my mom with tears in my eyes and said I really think this might bee it…we are going to lose Henley. Of course I didn’t want to BEElieve it. I tried my best to push the feeling away but my heart knew. As we sat quietly and watched as the procession pass I remember playing back Henley’s journey from beginning to that day. I could barely swallow from the lump in my throat. As I write this tears are streaming down my face just like they were that day. I knew there was nothing I could do but pray out to God to save my/our daughter!


June 20,2013 Inspired By You!

Short and sweet because that is all we can do. Emotionally we are drained. Henley’s pain has increased significantly today. So much so that we honestly don’t feel like we have a handle on it. Many times today she has cried out in pain. It is heartbreaking and the most helpless feeling! She is also not moving much and you have to hold her just right to not hurt her. How did this get so out of control so fast???? We just feel like screaming!!! We HATE you cancer!

We did receive some news today that gives us a bit of relief. We are headed up to Michigan as we write this. Henley will be having a PET/CT scan of her whole body tomorrow morning. This is not the diagnostic scan we normally use but it is something to help us get a better understanding of what is going on! After the scan we will go up to clinic and meet with a doctor that is filling in for Dr. Sholler while she is away. We are anxious to hear the news but are blessed to know our girl hopefully doesn’t have to be in agonizing pain while we wait until next Thursday to start figuring things out.

Please pray for definitive answers and a plan to get Henley’s pain under control.

One day at a time! We BEElieve!!!

We can’t thank you enough for all your kind messages, calls, support and prayers!!! Many say that we inspire them but we want you to know that you inspire us!! You keep us going, fighting, standing strong while always reminding us God is with us every step of the way! Thank you from the bottom of our hearts for sticking with us through the ups and the downs! You inspire us!

Henley_b2

Henley, you were in so much pain traveling up to Michigan.  I didn’t even know if we would get there.  You hurt so badly that it was so uncomfortable to sit in your car seat.  You would moan out in pain.  We were thankful when you could sleep.  We prayed for sleep so that hopefully the pain was lessened for you.  I can’t remember very many times you were in this much pain.  Other than moans and whimpers you didn’t complain.  Oh Henley, how I wish I could have taken your pain, taken your battle.  

June 21, 2013 God’s Plan

It looks like God’s plan is for Henley to watch over us. Scan looks bad and not much we can do beside keep her out of pain!

That day in the small room surrounded by Nana, Uncle Mic, Daddy, You, a caring doctor that was not yours because Dr. Sholler was out of the country, a social worker and your loving nurse and friend Julie, our lives, our world shattered.  As I held you in my arms I was told that you were slipping away from them.  Cancer had taken over your small frame and God needed you.  I won’t write more about that moment because I can’t bear to write it or even put the emotions down on paper.  In that moment I never wanted to stop holding you for the rest of your days.  I still long for that Henley.  I miss you so very much!!!

Shortly after leaving clinic we returned to our room.  Honestly not knowing what to do with ourselves.  Not knowing how to process the information that was just revealed to us.  We took a short time to snuggle and grieve.  I remember just feeling sick.  Sick to have to explain to your brother that he will soon lose his best friend, his playmate, his sister.

Henley_b3

I knew God was right their with us.  Without His presence we could not have stood on our own two feet and got up to enjoy the time we had left…you were still here with us…you weren’t yet gone.  We followed your lead, your smile and went out and about.  I remember just becoming numb.  We went out for ice cream and then found ourselves aimlessly wondering through Meijer.  We laughed, we cried, we were happy, we were sad, we were numb, we were confused but mostly we were thankful that at that very moment you were comfortable from the pain.

Henley_b4

It was going to bee a long week ahead with you having to undergo radiation treatment to help alleviate some of your pain.  Along with riding the pony at Meijer Cooper and you were able to pick out some books to help pass the time while at the hospital.  I still remember exactly what Cooper picked…a Star Wars book.  You, while I held you, routed through the books.  You went for the one that was hidden, in the back of the shelf, covered by other books.  You picked it up like you had known what you were looking for.  You put “Wherever You Are My Love Will Find You” by Nancy Tillman in the cart and were ready to go.   I can’t help but BEElieve that this book found us.

From that day on you asked that this book BEE read to you.  You loved to talk about the pictures.  You favorite color was blue…there just happened to BEE a whole page that was blue.  On your favorite page you would always put your hand on the page stopping the reading and point to the dolphins and say…”look, Jacob and Flipper!”  You loved dolphins.  Anytime you saw dolphins, whether in a book or on the BEEach, you named them Jacob and Flipper.  It seemed you would snuggle closer, listen more intently and just take it all the words when we read you this book.  This book BEEcame special to you and to me and to our family.  

July 19, 2013 when we woke to witness God taking you to Heaven I knew exactly what to do.  I held you in my arms and read our favorite book, over and over and over.  At that point I truly BEElieve you were no longer in your body.  Your body was just still holding on.  God had already healed you.  As your body fought to continue life on Earth it was in pain.  As I held you and read our special book you were comforted, you would sigh…a good sigh.  During our reading you also gave me a sign, a sign that I knew that you were ok, a sign that I knew that you were safe and in the arms of Jesus.  As I read to you you patted my arm.  Henley I will forever take that with me.  

As you turn 7 today I know exactly what I want to do.  As I read you Wherever You Are My Love Will Find You I will imagine you sitting on my lap patting my arm.  I can feel you now!

Share Henley's Story & Inspire Others


Dear Henley,

Happy 7th birthday to my beeautiful girl. Oh how I wish I could bee there with you in heaven celebrating your special day. Not a day goes by that I don’t think about you. I think about your beeautiful smile, your silly sense of humor, your infectious giggle, your bravery and so much more. I long to hold you and kiss you. On days like today, your birthday, I long to hold you in my arms even more.

From the day you were born I knew you were special. I’ll never forget that day. It was an incredibly cold January day when we went to the hospital to have you. Your mommy worked so hard all day to have you. We were so close to beeing able to meet you when you decided to give us a scare. Daddy knew that you were coming soon so I ran out to the car to grab our overnight bags. When I came back in from the parking lot the room was filled with nurses and the doctor threw me a pair of blue scrubs and told me to get ready we were going to deliver you right now! Your heart rate had dropped and they needed to do an emergency c-section to get you out quickly. I dropped the bags, threw on the scrubs and grabbed your mommy’s hand as they rushed us into the operating room. All of the chaos stopped quickly the second we saw your beeautiful face. Somehow the umbilical cord had gotten wrapped around your neck and that’s why your heart rate dropped so suddenly. You gave us quite a scare but we quickly forgot about it all after we were able to kiss your sweet face. I remember the first time I was able to hold you in my arms. My heart was filled with so much love and joy and the world around me seemed to stop. I knew I was holding an angel in my arms that day. You were a gift from God and I knew He had blessed our family with a special little girl.

Over the next four years we were able to celebrate your birthdays with you. I remember each one and was so grateful to be able to watch you grow and blossom over those years dispute cancer. We had some really fun celebrations. Like on your second birthday when you dressed up in your princess tutu and celebrated with all your family and friends. After the party you were so exhausted you fell fast asleep on your great grandpas shoulder. And on your third birthday I remember how silly you were at Gymboree. You were throwing balls at all of us. You and your brother had a such a fun time blowing the party favor blowouts in each other’s faces. On your fourth birthday we had so much fun together. Our whole family traveled to Great Wolf Lodge to splash and play in the water with you. You were such a jokester and kept pretending to fall into the water. We had your favorite, pepperoni pizza after a long fun day at the water park. I bet that this year you might want to have another big party with all of your friends in heaven. I can only imagine how amazing your party will be. We will be celebrating your birthday here on earth with your big brother Cooper and your new sister Crosbee. Cooper misses you so very much and we know that he wishes he could be with you today. You would be so proud of your little sister Crosbee. She is a lot like you in many ways and I know she will always look up to her brave and courageous older sister.

Happy birthday sweet girl. If I was there with you in heaven on your birthday I would twirl you around as we laughed and danced to your favorite songs. I would make sure to kiss you a thousand times and would gaze into your beeautiful twinkling blue eyes for as long as I could. I would hold on to you tightly and not let you go. I love you with all my heart and soul. You are my darling, my angel, my star and my love will find you wherever you are. Happy birthday Henley Hazel Romine.

Love,
Dad

Share & Inspire Others

dear Henley,

I hope you have a great birthday in Heaven!Remember when we ate rice crispy treats on a stick?Well,I do!The stars now remind me of you!I would do any thing you wanted to do on your 7th birthday!I got the best birthday present from you!Thank you so much for Crosbee!Even though she is a handful,she is fun!I can’t wait to see you again!I miss you so much!Life on earth is great!I’m back at soccer again!I hope you still see me play soccer!Have you made any friends up there?IF not,i’m always your brother!Are you taking care of Chloe?I bet you are!I hope you have fun celebrating your birthday!

Share & Inspire Others







Honor Henley

Honor Henley

Design FlourishMiddle Arrow




About this organization

Through Henley’s journey, we learned first hand how important it is to create everlasting memories. However, for families battling cancer, it is difficult to find the time and money to plan these trips. With this program, we hope to alleviate these barriers and provide them with an unforgettable experience!

The mission of The Henley Romine BEElieve Foundation is to give local children in Indy and their families an unforgettable experience by sending them on a day trip somewhere around Indiana. It will BEE called “Buzzing around Indy”.

Our goal is to have the child come up with their perfect Indy getaway. Whether  they want to go to a Colts game, see a concert, go to a Pacer game, go to the Zoo, or go on a shopping spree, we want to be able to provide for whatever their little heart desires.

We will give them a camera to take lots of pictures. After they come back from their day trip we will take the camera and make a photo book of their day out on the town.

We are setting up this foundation in loving honor of our BEEautiful daughter Henley Hazel Romine who was born January 15, 2009 and earned her angel wings in Heaven July 19, 2013. She was diagnosed with a rare form of childhood cancer, Neuroblastoma, at just 18 months old. She fought bravely for 3 years. Henley loved life and all it had to offer. She was full of personality.

Henley loved to travel, discover new places and just explore. As a family we were able to create so many memories and had so many experiences by taking little day trips. We made most of every day we had together.

We hope this experience will create lasting memories for many children and their families. The picture book will be a reminder of their special time together.

We will need your help to make this possible. If you are able to donate museum passes, sporting event tickets, movie tickets, hotel rooms, car services, music venue tickets or anything else that would BEE fun to do around Indy please email us at beebrave15@yahoo.com. If you would like to make a cash donation please visit: http://beelievefoundation.org

Thank you for helping us to honor our BEEautiful daughter Henley Hazel Romine. We do not yet have a tax ID number. That means that any donations as of right now are not tax deductible.

Henley Romine Beelieve Foundation

Did you know…

  • Every day, 43 children are diagnosed with cancer.
  • 12% of children diagnosed with cancer do not survive.
  • Children’s cancer affects all ethnic, gender and socio-economic groups.
  • The average age of children diagnosed is six.
  • More than 40,000 children undergo treatment for cancer each year.

How you can help

The Henley Romine BEElieve Foundation will provide a child battling cancer and their family with an all inclusive day, “Buzzing Around Indy” that will allow them to make everlasting memories and renew their spirit!

Example: Lunch at the Hard Rock café, Bike tour at White River State Park, Pacer Game and Fun Desert at Chocolate Café.

GIVE

Check it out at beelievefoundation.org

Share This Story & Inspire Others


whoilove.com
Be inspired – Be kind.

Carmel, Indiana
317.818.4595
info@whoilove.com