Since You’Ve Been Gone: A Year of Firsts

By Honey Ford

On April 7, 2014, Honey Ford and her husband, Nathan, heard devastating news that would change their lives forever. Their seventeen-year-old daughter, Chelsea, had a brain tumor.
In a candid story of love, inner-strength, and courage, Honey chronicles their heartbreaking journey from the moment they learned of the diagnosis through Chelsea’s continual challenges as she battled the disease through surgery and subsequent treatments. As Honey fought to keep her only child alive, she details how she became a passionate advocate for Chelsea, relayed news to family and friends, coordinated visitors, and organized a much-needed getaway to Fiji for the family. As the worst possible outcome became a reality, Honey reveals how she managed to get through the darkest of days and a year of firsts—one step at a time—while providing inspiration to others enduring similar challenges.
Since You’ve Been Gone shares the true story of the tragic reality a small family endured after their only child was diagnosed with brain cancer.

• Language: English
• Publisher: Balboa Press AU
• Release date: Nov 28, 2017
• ISBN: 9781504311656

Honey Ford

Honey Ford and her husband, Nathan, reside in Brisbane, Australia. Their daughter, Chelsea, was just eighteen years old when she passed away in 2014 from brain cancer after a brave six-month battle. Honey believes that everything happens for a reason and that this is hers—to tell the world about her darling daughter.

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Copyright © 2017 Honey Ford.

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The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

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ISBN: 978-1-5043-1166-3 (sc)

ISBN: 978-1-5043-1165-6 (e)

Balboa Press rev. date: 11/27/2017

Contents

Introduction

PART 1:   The Battle is Over

PART 2:   How the Struggle Began

PART 3:   A Year of Firsts

PART 4:   Life Goes On

THANK YOU!

I would like to thank a few people who helped me through the last few years:

My beloved Husband Nathan for whom I could not be without. Words cannot express the emotions I have for this man. If I had to go through this hell, I’m glad Nathan was by my side!

My friends Donna, Kyle, Linda, Jim, Janine and James (the Bubbles and Bobblers) and Chrissie and Steve who have kept me smiling though the dark times and supported me through everything from arranging Chelsea’s wake to writing this book.

Our Parents for helping out whenever they could and just being there for us.

Thanks to our work colleges and Chelsea’s teacher for all the support and fund raising for which we are forever grateful.

A big thank you to Chelsea’s friends Jess, Cate, Ally, Angus and many more who are now our friends. You keep us young and help keep the connection with Chelsea.

And finally a special thank you to Alex for helping me edit my book. I used to skip English class when I was in grade 12 as I hated it and it showed in my punctuation and past and present tenses. Alex had a big job on his hands!

Introduction

A Year of Firsts since You’ve been gone

M onday, September 30, 2014 was the worst day of our lives - our only daughter Chelsea passed away from Brain Cancer - a Glioblastoma Multiforme. Chelsea was just 18 years’ young and was an amazing young woman! Her story needs to be shared to raise awareness of this insidious disease and the desperate need for a cure.

Chelsea did not win her fight against brain cancer but her strength and commitment to fighting it was inspiring. Unfortunately, Chelsea is not alone. Too many Australians suffer with Glioblastoma Multiforme and currently only five percent of people, adults and children alike, survive it.

I knew Chelsea wouldn’t survive this and for the six months we battled to help her, I knew it was going to be the last birthday, the last chat, and the last hug. My book is about Chelsea’s brave battle but also about our firsts. Our first birthdays without her, our first Christmas, our first meal out, all without our daughter beside us.

I am not a writer and it was hard to write this book and even harder revising it. I will forever remember the day she died like it was yesterday. Writing this book was therapeutic though. I felt relief to get this chatter out of my head and onto paper. I love talking about my daughter so in that respect it was easy to write. I knew she was special and I knew people would get to know her, I just didn’t realise it would be this way. Growing up, I explained Chelsea’s personality as an extroverted introvert. She loved to be the centre of attention but as soon as she realised she was, she would shut down. She was always like this so I’m glad everyone now gets to know her name and her story and I’m glad she won’t get too embarrassed.

I could not have gone through this alone. My Husband and Chelsea’s father, Nathan, is my rock, my world. If I had to go through this journey, I am glad it was with him. Nathan was always there when I needed him as I was when he needed me. Together we have cried, hugged, got angry at the world and talked. We talk about our feelings, we talk about our love for each other and for Chelsea. Our friends and family are just as important. We have developed new and closer friendships with people who were both social friends and those we worked with. Our closest and best friends became even closer as we shared our deepest emotions with them. We are lucky to have such caring people around us.

I hope you appreciate my book and reading about my amazing daughter Chelsea.

Chelsea%20-%20300.jpg

Chelsea took this photo herself in approx. 2012 and I think she looks very serene

PART ONE

The Battle is Over

I had never seen anyone have a seizure before Chelsea. It scared me! We were staying at the Palazzo Versace on the Gold Coast to celebrate her 18 th birthday, which she had had just four days before. It was approximately 4 AM on September 30, 2014, and Chelsea was in the shower to try to get some relief from a very bad headache, when we heard a thump. I didn’t think much of it at first as she usually sat down in the shower; I just assumed she had slipped a bit.

Nathan called out, Are you OK, sweetie?

No response. He asked me to go have a look.

Not wanting to invade her privacy, I slowly walked up to the shower door and called out to her, Are you OK, Chelsea?

Still no response. I slowly opened the door so I could just see her face. Her eyes were open and fixed in one spot, and she was shaking. She was sitting down in the shower and the thud we heard came from her legs straightening out when her seizure started.

I called out to Nathan that she was having a seizure, and he immediately leaped out of bed and came over. I turned the water off and tried to get her out. I couldn’t move her legs. They were fixed straight! Nathan came into the shower cubical with me and grabbed her under the arms, and I got an arm under her knees and hit upwards so her legs would bend. We carried her out of the shower and laid her on her side on a towel.

As Nathan was trying to gain a response from her, I called the front desk to call for an ambulance. I went back to my daughter and husband. Seeing her like that was just heart-breaking, as I knew things were changing for the three of us—again.

Nathan was so calm. His training in first aid response from being a flight attendant kicked in, and he did an amazing job with her. As we were waiting for the arrival of the ambulance, the seizure stopped and Chelsea woke up. Yay!

By this stage, I had placed two more towels on top of Chelsea so she wouldn’t get cold. She said, Where am I? What happened?

Nathan calmed her down and said, It’s OK. You’re on the bathroom floor.

My head hurts. I want to get back into the shower.

I was kneeling down behind her and told her, You’ve had a seizure. You need to stay still and relax. The ambulance is coming.

I’ve had a seizure? Chelsea repeated. Dad, I can’t see. Why can’t I see?

Nathan was very calm and said that it was OK. Think of your brain like a computer. It has had a problem and needs to reset itself. You will be able to see soon. Your brain is just resetting.

All this time, Nathan was holding Chelsea’s head up, so I rolled up a smaller towel to use as a pillow for her. We were both reassuring her that it was going to be OK and that we loved her. Chelsea then said, Dad, I’m scared. Then she closed her eyes and relaxed.

These words were the last she spoke and will haunt us forever!

Nathan, as calm as could be, just stayed with Chelsea and kept saying to her, It’s going to be OK.

There was a knock at the door. I jumped up and opened the door. It was hotel security with the Ambulance personnel. I quickly explained to them that Chelsea had a brain tumour called a GBM (glioblastoma multiform) on her brainstem. I told them the medications she was taking, including the blood thinners, as well as the blood clot that was in her carotid artery. I was so nervous. I was pacing up and down while getting dressed, heart racing and brain going into overdrive!

Chelsea had just started her second seizure. The paramedics gave her some medications but couldn’t get the seizure under control, so they decided to take her as is. As they were loading her up on the trolley, Nathan got dressed. I grabbed my bag, and we followed them out.

There was an emergency response ambulance out front of the hotel. The lady driving it told us she was from the intensive care unit and we would travel with Chelsea in the back of the ambulance. Nathan was in front, and I went in the emergency response unit with the fourth officer. Nathan told me later that the ambulance driver said that he was very calm. Nathan responded, It’s not about me. I need to be calm for Chelsea.

My head talk while all this was going on was…

Two of the paramedics are young and cute, and Chelsea is going to be so embarrassed to know she was naked in front of them. Oh, the poor thing. I won’t tell her for a while, I think. All this time, the hospital kept asking if she had had a seizure, and she never did. Chelsea will be pissed when she wakes up again! Hurry up, driver! I can drive faster than this … I have to be there when they take her out of the ambulance.

I entered the emergency department of the Gold Coast University Hospital, the Nurses at the reception desk asked me to come over to give my daughter’s details. I wanted to go straight to my daughter’s side. I wanted to see my husband, but I took a deep breath and told myself she was in good hands and it was OK.

When I was handing over my Medicare card, I looked down the corridor and saw Nathan standing outside a room. My daughter, Chelsea, was lying on a bed with Doctors and Nurses trying to stop the seizures. After I approached, Nathan and I spent a few minutes with Chelsea. We held her hand and told her how much we loved her, giving her kisses on her forehead. She was very hot when we first walked in, red in the face and sweaty, but the Nurse had said her temperature was OK. I asked if she could take it again as we could see Chelsea get hotter. The Nurse did, but then as quickly as her temperature increased, it decreased again, her face was no longer red, and the sweating stopped. This was the least of her worries! The Doctors couldn’t keep her seizures under control and asked us to leave the room while they put her in an induced coma. This was the only way to help her brain relax and stop the seizures.

A Nurse waited outside the room with us explaining what they were doing. Nathan and I joked that Chelsea would be cranky that she would have to take yet another pill—this time for epilepsy! Shortly after, we were allowed to go back in and saw that Chelsea had tubes and wires everywhere! A Nurse checked her vital signs. I watched as she opened Chelsea’s eyelids to see if her eyes were still dilating when a light was shone in them. They were. I saw them—her beautiful blue eyes that were so bright.

The Doctors told us that they would get her round to have a CT scan immediately. They packed up the bed with all the machines and monitors and took her away. As they were rounding the bend, another bed with a patient was coming down the corridor. The Nurses yelled, Move! Move! I remember thinking this was a full-on emergency, just like you see on TV on those ER shows. But it was Chelsea, my Chelsea. That was not right!

When she came back from the scan, they asked us to wait outside again while they set her up in the room. When the Doctor called for us, he took us straight over to the far corner of the room to the computer screen. I looked around and noticed there must have been ten Nurses and Doctors all working around Chelsea. I was amazed to see this many people! Again, this was not a TV show I was watching. This was my daughter!

The Doctor showed us her CT scan. We could see that it wasn’t right. There were too many grey areas.

What he said next I will never forget. She has bleeding on the brain. You can see here that it is all over. He pointed at the screen and to all the areas around her brainstem.

Fuck! We knew this wasn’t good. We knew we had a fight here.

Inside, I was nervous about the future, about Nathan’s reaction, and the thought of her having another drain in her brain. Outside, I was calm, but it also felt like I was watching myself in the third person.

We went to her bedside and held her hand. We cried and kissed her and told her we loved her. I knew this was the end for her. I knew what was coming. I didn’t want to prolong the inevitable on life support with a drain to release the pressure. She had been through enough. I said to her quietly as I kissed her forehead, You can go whenever you’re ready, darling. I love you.

Nathan said to me, Don’t say that! She can still hear you!

I knew that, but at that time, Nathan didn’t know about my Mum and her dad. When my grandfather was in hospital dying, Mum used to visit him every day and night and pray for a recovery. Pray that he made it. One night, Granddad said to Mum, Please let me go, darling. That night Mum didn’t pray for his recovery but for a safe journey. Granddad was at peace by the next morning. That was a brave thing to do and one I will never forget. After I said that to Chelsea, she got all hot again but only briefly. The Nurses checked for vital signs again. This time, when they shone the light in her eyes, they didn’t dilate. I could still see the brilliant blue in her eyes but it was very thin as her pupils were fully dilated. I heard them say pupils fully dilated. I knew what that meant, we both did but I didn’t associate it with Chelsea. I looked up over towards the monitor, there were people all around us but I didn’t see them or hear them. Everything went slow, quiet. I saw my daughter, my Chelsea standing over to the side of the room watching. I saw her in my mind’s eye, smiling.

A little while after that, I’m not sure how long, the Head Doctor and Head Neurosurgeon came and said we should have a talk. I knew what this was going to be about! I said to Nathan No resuscitation. He just looked at me. They took us into a consultation room, with a couple of the Nurses who has been with us the whole time we were there. The Doctors started: We have had a look at Chelsea’s scans and they aren’t good I’m afraid.

Yes we know, I said. She has a GBM and a blood clot in her carotid artery; we knew this was going to happen at some point.

Look, we need to discuss options here. The Doctors were very good and very attentive towards us. They were choosing their words carefully. I have spoken with Dr Jeffries and she has explained the situation to me and that you are very open minded parents, no bull shit.

Nathan interjected, We just want to know if there is any way around this. Is there anything that we can do that will give Chelsea a proper life?

The Neurosurgeon said, We could put a drain in her head to drain the blood.

Will that help her though in the long run?

I’m afraid there has been too much damage to her brain already.

I had become resigned to the fact that this was it. Nathan and I looked at each other, held each other and with a deep breath I said, No resuscitation.

Nathan said, If there is nothing we can do to help her, nothing that will give her a normal life then agreed, no resuscitation.

Chelsea wanted to be an organ donor, can we please look into that. She knows that she may not be able to due to the chemo and radiation but we have to look into it please. The Doctor looked at Nathan and me and said, Of course, we will do everything we can to find out. Look, I just have to say if this was my daughter, this is how I would want her to go. We will do everything we can for her. Treatment will not stop. With tears in our eyes we thanked them.

The Doctors left the room. The Nurses said take a minute and come around when you can. They left us in the room. We looked at each other and just hugged. When we went round to the room they had put Chelsea on life support in order to keep her alive, even if it was in function only, until we found out about organ donation. Nathan and I were taken down the corridor, we just broke down. Nathan was saying this can’t be happening, take me instead he cried. I hugged him so tight; I took his face in my hands and said, You did so much for her. You kept her calm. You did a brilliant job, she was not worried and you were with her. She won’t remember any of this. It’s OK. and with that, I cried too Oh how I cried!

The next time we saw Chelsea, she was upstairs in ICU. We