Regine's Book

by Regine Stokke

  We're good at making the most of the time when I feel more or less okay. We've gotten so close!

  …

  Thursday, November 26, 2009

  I thought I'd post a quick update: The chemo knocked me out completely and I've been in bed ever since. I've never felt so terrible before. I was sure I would die. The worst part is that it didn't even help: It just killed my healthy cells—the ones I need so badly right now. I took a small break from the chemo, and I've managed to spend some quality time with my family in the evenings—some, but not enough (to put it mildly).

  On November 24, we celebrated Christmas at home, since I probably won't be alive at Christmas. As we usually do, we invited Grandma and Grandpa. I was in good shape and we had a nice evening, luckily. We had a delicious Christmas dinner, and dressed up and decorated the house for the occasion. I'm so glad I was in good shape for everything. The only thing missing was presents, but that's not really what Christmas is about anyway.

  There was a candlelit vigil for me today. I don't know how many people were standing in front of my house holding candles, but it was a lot. My whole family stood on the verandah taking it all in. It was really touching, and we all really appreciated it. It's so nice to see how many people care. There were people I knew and people I didn't all mixed together in the crowd.

  I started chemo again yesterday. I'm totally miserable, and I'm so tired of it. It will probably be my last chemo because my body can't tolerate it anymore. My stomach is shot since my spleen and liver are both so swollen. I'm still struggling with stomach pain, so I need big doses of painkillers. I don't think anyone can understand how exhausted I am, and how much pain I'm in.

  Regine is in continual contact with Eli Ann. The best friends exchanged these text messages on November 28:

  I just have to say that it's been such a powerful experience seeing you go through all of this. You've never let the cancer define who you are. The whole time you've been the same Regine as ever—the same Regine that everyone loves so much. I have so much admiration for you. I hope we get to see each other soon!

  —Eli

  Celebrating Christmas early on November 24, 2009. From left: Regine's mother Julianne, grandmother and grandfather, sister Elise, father Lasse, and Regine.

  Things are just getting worse and worse. I can barely move. It hurts so much to even breathe. I have to start taking the sleeping pills that I mentioned before. But they won't knock me out for sure. They'll probably mess with my head, but…I really want to see you before it's too late. Maybe we can find a way, even though I'm usually out cold in bed. Just want to say that you have to take good care of yourself after I'm gone. Believe in yourself and follow your dreams. Look forward to graduating from high school. Then you can do what you want. And you'll definitely make new friends. Promise me that you'll have a good life. That's the best gift that you can give to me.

  —Regine

  My condition is getting worse

  Tuesday, December 1, 2009

  Things are going really badly these days. Today I probably sat up for a total of two hours. Otherwise I've just been lying in bed. The pain in my spleen is excruciating. If feels like it did last fall when I had a spleen infarct. But I don't really know what it is—we haven't done any tests since there's nothing we could do about the results anyway. I couldn't complete the chemo cycle. My body just couldn't tolerate it, and absolutely no chemo medications were attacking the cancer cells. The white blood cells (the leukocytes) have risen to 200, so it's a miracle I'm still alive. I could die at any minute now, and I can feel it in my body, too. I've never been so sick before, and it's an absurdly terrifying feeling. But at least right now I'm not as afraid of dying as I was before. Maybe because I'm so worn out and exhausted and in such pain. I'm still scared, but not as much as before. I'm more worried about the people around me, the ones who have to stay behind and grieve. I'm so grateful for all the support I've gotten during this time—from family, from friends, and from my blog readers. You have no idea how much you mean to me.

  By the way, a few days ago I received the poster you readers put together for me. It turned out so well—and it's so giant! Special thanks to all who spent their free time putting it together. Also want to announce that we earned 106,000 crowns from the clothes sold on Beltespenner. Altogether we've collected about 300,000 crowns—all of which will be donated to fighting cancer. Thank you so much to everyone who contributed.

  Regine's last four entries resulted in 6,698 reader comments. Here's a small selection:

  Dear Regine! It's so painful for me to read about your declining health. No one deserves to go through what you've gone through. I've never been as adamant in my belief in an afterlife as I am right now. I know in my heart that there must be something good out there waiting you. You've been so strong—no one could have been stronger—and you've shown such an amazing will to live the life that's suddenly being taken away from you. I wish you all the best, Regine, and I hope that there's something better out there that can give you the happiness you deserve. You've given so much of yourself in your too-brief life. You've lived life to the fullest, and that's as much as we can ask from anyone. You've inspired everyone you've come into contact with, and your soul will shine like a star, forever. (But in the meantime, in my heart, I still hope that a miracle will give you back your life.)

  My thoughts are with you, dear Regine!

  —Anonymous

  I'm crying for you, Regine. My thoughts go out to you and your family.

  —Karina

  Dear beautiful you. It's a miracle that you can even pull yourself together enough to write to us out here. I bow to you, stunning, wise, brilliant Regine. Do you know what? This Christmas will be special for me. Your blog taught me something. I've learned to value being healthy, having a good life, and I've learned to appreciate how important it is to enjoy every day. Every single day. Everything else is just secondary.

  At the same time, it's so hard for me to see you suffering—if we blog readers could just take SOME of your pain. It's unfair. You're the most valiant, courageous girl out there.

  I'll light some candles for you.

  I wish you all the best—no matter what happens.

  —Marte

  Dear Regine!

  This is so hard to read. I can't believe you're suffering like this.

  I hope more than anything that your suffering will end, and that you'll get better.

  I hope that this terror will release its grip on you. You said that you're not as scared as you were before. It makes sense to be scared. But if some of the terror can go away, that would be good.

  Your loved ones will carry the sorrow. It will be a lot to bear. But if things go badly, they'll be proud to carry it, because they're mourning you, Regine. (That is, if this really is the end.) Remember that if the worst really happens, they'll support each other in their sorrow. Your family's very strong.

  Another thing, Regine. If the worst happens, we'll all be following after you. Me, your parents, the rest of your family, your friends, and all of your blog readers. We'll all arrive at the final chapter of life one day, and we're all going to join you in the end. We and your loved ones will follow you.

  Keep hoping for a miracle. I'm still hoping for that. And I'm not the only one. Not by a long shot!

  We're all still hoping for a miracle. You deserve a better fate.

  But there's no doubt that you're incredibly sick right now, so if hope doesn't change anything, try not to be scared. Try as hard as you can.

  I don't think there's anything to be scared of, in the end. I really don't.

  I'm not religious either, but I'm praying in my own way to my own strange powers, gods, or whatever you want to call them: I'm asking for a miracle. I'm hoping that things will change. That you get well. I'm praying and hoping for that.

  If that doesn't happen, then I hope you can feel all the love and admiration that's coming your way. Take in all of the incredible positive energy. The support c
oming your way is enormous, because you've given so insanely much of yourself.

  …Thank you for all the texts, thoughts, and photos you've given us. It means a lot!

  With wishes for a pain-free, peaceful night,

  —A 37-year-old dad

  You know me, Regine. I've always had too much to say. But I've been struggling to find the words to say to you now, and I just can't seem to find them. There's nothing I can say. I'm just not taking this very well. It shouldn't be this way.

  This can't happen! I'm dumbstruck by all of this. I just don't understand it. I love you. I love you a lot.

  —Sofsen

  Hi! I am a thirteen-year-old girl who almost had cancer too, but the doctors removed the tumor before I was diagnosed. Your blog makes me realize more and more how lucky I was, and still am. I sympathize with you, and hope with all my heart that a miracle can still happen. I know that you give hope to a lot of people out there. It's incredible that you can blog, despite your situation. When I was at the hospital after my operation, I couldn't do anything. Things are probably worse for you than they were for me, and still you post regular updates. I'm thinking of you.

  —Andrea

  Dear Regine,

  Life is full of happiness, and life is full of despair. I've been following your blog and I've read about your happiest and most despairing moments. Dear Regine, I'm the mother of a 22-year-old girl. She's my greatest joy and my profoundest happiness—just like you are for your mother. I send warm thoughts your way all day, every day. Thousands of us are praying for you and yours, and sending all of you our love. Take care of each other.

  —Beathe

  Dear, dear Regine: I have no idea how many tears I've shed since I started reading your blog. It's been a true privilege to participate in your life and your pain.

  Dear Regine: I just want to say thank you again from the bottom of my heart.

  Thank you for letting me share in your life.

  Thank you for everything you've meant to so many people.

  Thank you for your spark, and for your courage.

  Thank you for being such a good role model for so many people—however old they may be.

  Thank you for being so honest about life—and about death.

  And most of all: Thank you for being the fantastic person that you are.

  You've earned a place in so many people's hearts.

  I'm hoping and praying that you have a peaceful night, without fear and pain. I think a lot of us would do anything possible to ease your pain if we could.

  —Warm thoughts from Wenche

  I think about you all the time, Regine. You're the strongest person I've ever come across. I cry when I read your story; it makes me realize how unjust life can be. You must be one of God's sweetest angels, since he's calling you back so soon.

  If I have a daughter one day, I'm going to name her after you, and I'll tell her what a strong and amazing person her namesake was—you: Regine Stokke.

  —Linda

  Dear Regine!

  You've made the world a better place. You've contributed a complete and unique life's work just since you got sick! You've done it with your blog, and with your art, and just by being who you are.

  We're able to see things more clearly because of you; we're more grateful—less egotistical, less self-centered—and wiser, more generous.

  Your life has touched so many people—you've made a huge impact. Thank you so much, Regine!

  I'm so glad you're less scared than you were before. Even though we're all wishing you'd had a longer life, it's not hard to see that the end is near. So, realistically, the best I can hope for now is that you can leave this life with peace in your heart.

  Peace be with you! Warm thoughts to you and your family.

  —Ingrid

  Dear, beautiful Regine: I've never written to you before, but I've been following your blog for almost a year now, and hoping and hoping that you'd hear some good news from the doctors. But right now I just have to say that I'm angry. I'm furious, because it's crazy that such a beautiful, smart, positive, and lovely person, who's only eighteen, has to experience such torments! It's absurd. No matter what happens, Regine, I hope that your pain is at an end. Hopefully you'll have some quiet and pain-free days ahead of you, with your fantastic family and friends. I think of you night and day. “How's Regine doing today?” is the first thing I think about when I wake up. I've never met you before, but I've gotten to like you so much!!

  —Hug from a concerned grandmother in Frederikstad

  I'm thinking of you, Regine!

  You've made me more aware of my life. You've changed me. I took life for granted before, and didn't consider how incredibly lucky I am just to be alive. Now I feel like a criminal, sitting here in comfort, knowing that I don't have a life-threatening disease—while you have to live with the knowledge that you might die at any moment.

  But you've changed my life. I'm not as superficial as I was before. I'm not a girl who just thinks about boys, makeup, and clothes. Instead I'm thinking about how I can make a difference with the time I have on this earth.

  This will be an entry without a smiley face, hearts, or a “lol.” And that's because I'm thinking of you, and your incredibly harsh destiny.

  I'm not a Christian, but I know that something good is waiting for you, Regine. I just know it!

  Farewell!

  —Oda, thirteen years old

  You're an amazing person, Regine!

  You've won a gold medal, you've earned the applause: You're an extreme sports athlete.

  Unfortunately, right now, you're probably at the end of the road, with no strength left, and in the middle of all this, the sound of applause just sounds like so much noise. I want you to know that you've made a huge difference: You've gotten people to donate bone marrow; you've made people change their outlook about what's important in life; you've made them stop and think. You've given readers of your blog—young and old—a lot of insights into what it's like to live with terminal cancer.

  You've enlightened us, inspired us, informed us, and increased our understanding. You've made a lasting impression. A huge impression. You won't be forgotten. I hope that this means something to you now. I want to thank you for how much you've given of yourself. I want you to know this, even though of course I want you to stay on this earth for a good while longer. You're an important person. I admire you.

  Most of all, I'm hoping for a miracle. I hope you get relief from all this pain, and can soon find some peace in this overwhelming chaos. I hope that you'll feel surrounded by warmth from all the people who care about you. I think of you and cheer you on. Always.

  —Ashild

  Oh no. Don't leave us. ☹

  —Kaddy

  I'm thinking of an incredibly strong girl: I'm thinking of you, Regine…You've been fighting for so long now, and you've won so many battles, even if the disease seems to have the upper hand right now.

  The pain passes, but the beauty remains. ∼Pierre Auguste Renoir (1841–1919)

  —Heidi

  After Regine

  Dear beautiful sister

  Thursday, December 3, 2009

  Dear beautiful sister,

  After fifteen long months of fighting, you've finally found peace. These were probably the longest and toughest months of your life. They were for us, too. We endured a lot together, but we had a lot of good times, too.

  After a while, I suppose we all realized that things were nearing the end, and that you were suffering. You needed a lot of painkillers, and you were exhausted.

  On Thursday, December 3, 2009, at 2:02 pm, our beloved Regine passed away peacefully with mom, dad, little sister, and kitty cat at her side.

  The photo that's included here was taken in Rome, right before her diagnosis.

  —Hugs, from your little sister Elise

  Almost 9,000 readers sent a last goodbye to Regine. Here's a small selection:

  Two beautiful brown eyes

  A br
illiant smile

  An enormous heart

  And a life that was much too short

  You won the hearts of everyone

  You gave all of yourself

  Even with all the pain

  That awaited you

  Sleep sweetly, little angel

  You will never be forgotten

  You can sleep safely now

  Your soul at rest

  My deepest condolences to Regine's family and friends in this time of sadness.

  —Tutta

  Many kind thoughts to you in this difficult time.

  Regine will never be forgotten.

  She's touched so many people.

  —A fellow human being

  Regine inspired so many people to reflect on their lives. We all grew to love her through her blog—which was beautiful even when it was sad.

  Condolences to the family.

  Sleep well, Regine. And thank you so much for everything you gave to us.

  —Frida Petrine

  Condolences—in the form of visits, phone calls, text messages, Facebook messages, and countless blog posts—kept pouring in from the friends and family that Regine left behind. Regine's childhood friend Marte Steffensen wrote the following on her own blog:

  I can't find the words. I'm just overwhelmed with emotion. I can't breathe, and everything is confused and mixed up. I've checked your name on MSN at least a hundred times today just to see if you're logged on. When I found out that you'd left us, the whole world stood still. I couldn't hear anything, and time seemed to stop.

  We had such a great childhood together! I swear, no one had more fun than we did when we were kids. We did so much. We made tree houses, recorded Smurf music videos, and made the world's best horror movies. (And yes, I also remember the time we found a skull out in the woods. An animal skull—which we promptly placed on top of a stick so that we could pretend it was a horse.) You, me, Malin, and Therese—we did everything together. We even brought the same imaginary friend home from school every winter! (Actually, we alternated who was going to have to take “Ank” home every week.) We were both obsessed with photography, and I remember like it was yesterday the time when we went to the Nordic Lights photography festival together, and met those famous artists. The high point was probably meeting Matt Mahurin. We both loved Metallica, and Matt had recorded a video with the guys, and knew Metallica personally. We stood there talking to him for a while, now that I think about it. Oh my God, we were so happy then.