This is your older self writing. You don’t know this yet, but your life is about to change in a way you can’t even imagine. The reason your chest hurts will be figured out, but it’s going to get a whole lot worse before it gets better.
I can imagine the day you are reading this, January 12th, 2014. Your little body is so weak right now. Your chest is in constant pain and you feel like trash. It hurts to lay down so you sleep off and on while sitting in a chair or in your bed with so many pillows it’s practically a chair too. Mom has brought you to the doctors more than once in the last four or so days. As of right now they are saying it’s pneumonia. This is the first time in your whole life you’ve been this sick. Let me just warn you, this is not the end. They say things have to get worse before they get better that is so true right now.
Tomorrow you will go back to the doctor. He will listen to your chest again and again and eventually he will have someone else come to listen. Both of them will be confused. After a long wait, he will say to you and Mom, “I am not sure what is going on. You need to go to Boston Children’s Hospital. Go to the emergency room. They will know you are coming.” Never before have you confused a doctor with your symptoms. You will drive to Boston completely unaware of the journey you are starting. Tonight as you sleep, this will be your last night in your own bed for a while.
When you get to the hospital you will finally realize that something is going on that is bigger than you were imagining. When a surgeon walks in, your mind will race and think, “Surgery!? To me?!” You will drift off to sleep out of exhaustion and as you sleep, your journey begins.
The next time you wake up, you’ll be in the ICU with tubes and wires all over your little frail body. You’ll be itchy and angry. Confused and sad. You’ll be wanting answers but unsure what your questions are. Amy, you have now entered the new volume of the story of your life. Some would wonder why it’s not just a chapter. It’s a volume because it’s too long to be just a chapter. I am so sorry, but even when you celebrate your last chemo with your cousins (you will get there!) it unfortunately does not end there. You are going to deal with side effects and things for the rest of your life. I hate having to tell you this. The rest of your life will be affected by these next days. Some of the effects will be good and others not so much.
Days will pass and finally a plan will be set. A doctor will sit on the edge of your bed with Mom on the other and will tell you the story of a party crasher. You won’t know it then, but she is telling you that you have cancer. You, the seven year old girl who never had more than a cold and a stomach bug each year is being told you have cancer. You, the seven year old girl who ate vegetables and healthy foods is being told you have cancer. You, the seven year old girl who was active like a bunny and who was always dancing and skipping, is being told you have cancer.
Your world has changed completely. Your thick blonde curly hair is a matted mess and is thinning noticeably. Your arms are bruised from IVs and you now have one placed on the top of your arm that will stay there for the next three months. Your once strong body is becoming weak and thin. Chemo is being dripped into you and you take so many medications each day that you need both hands to count them.
Your chest ache was more than growing pains or a pulled muscle. It was a 9 centimeter mass lurking within your chest. It was hanging out in your left lung and completely collapsed it. It was pressing up on your heart in a way that made it impossible to remove without significantly shrinking it first.
I know you are probably overwhelmed at this point, but there is more. I am sorry that you are going to go through this. I never wanted you to have to lose your childhood or your innocence. I never wanted you to lose your confidence or your hair. I never wanted you to know the names of scans and chemos. I never wanted you to have brain surgeries and have to worry about losing your ability to run or even walk. I never wanted you to go through this.
The next year and a half is going to be tough. Chemo multiple days every week. Many surgeries that are going to be terrifying. CT scans and MRIs will become all too familiar. Radiation therapy will make you leave school early for an entire month. ER visits in the middle of the night because you spiked a fever. You are going to meet some amazing new people. Some of the smartest people you’ll ever meet. They are going to do so much for you and will work their hardest to help you get better.
Worst of all, you’re going to find out that this was genetic and that your little baby brother Hunter also has one lurking in his lung. But because of you it will be caught early. So early in fact that he only has surgery for treatment. It is not your fault. Nothing you did caused him to get it too. He thrives because of you. You saved his life.
This next year and a half is going to be long. It’s going to be scary. It’s going to push you to show everyone just how strong, fierce, and determined you are. You are going to make memories that are both good and bad. You’re going to come out of this stronger than before and you’re going to find out so much about yourself. This is going to change your life in many ways. Your family is going to become even closer than before and you will be able to get through anything that is thrown at you in the future.
Little Amy, tomorrow a new volume of your life will start. Your carefree volume of life will have to end and I am sorry about that. Tomorrow you will take the first step into a world you never thought you would have to step into. Tomorrow your story will take a turn from the typical seven year old’s life story.
Little Amy, You are strong. You are brave. You are determined. No one wanted you to go through this, but you will get through and you will be better than ever on the other side.
I love you and know you can do it.
Love, Future Amy from 2021; who is now almost 15 years old, seven years from Pleuropulmonary Blastoma type 3 diagnosis and almost six years from end of treatment