Someday… someday you will read this letter. Someday you may ask me why. Someday you may ask me how. Someday, I may gloss over something that would have been important to you. To avoid that, I’m writing this letter to you today, and putting it in your baby book for safe keeping.
Dear Amy,
Today you are only three (and a half!) years old. I’ve done all I can to prepare you, but you still don’t really understand what’s about to happen. I have read books to you. I’ve taken you to the hospital and let you ride around in one of their wagons. You met all the wonderful people there. We’ve played doctor on me, on your father and brother too. You’ve taken your sick stuffed animals, and made them well. You’ve casted their legs, and healed them. You’ve spent countless amounts of time on Stanford’s website, playing their hospital games. I’ve told you that we’re going to the hospital to have your doctor put a new bone in your leg to fix it, and you are so excited. You have gleefully demanded that I take you to the doctor tens of times over the course of the last week. I’ve done all I can to make this an adventure for you. I even have one more surprise- I can’t wait to give it to you. You’re very first suitcase. It has wheels so you can pull it along, and is all decorated with Pokemon characters. I’ll give it to you day after tomorrow, and then we’ll pack it together with all kinds of fun stuff. And when it’s all packed, we’ll have lunch, and leave on your first grand hospital adventure.
Sometimes I wonder what you will remember. I wonder if you will remember any of this preparation…
What you definitely won’t remember, is what I haven’t told you. I’ll start at the top: I’m absolutely terrified. I know in my mind this is right. I know in my gut this is right. My heart… my heart breaks at the thought that I’m willingly handing you over to a man who will cut into, and scar, your precious little body. That he will cut into your flesh, into your muscle and bones, and cause you great pain. He will do everything he can to make you well again, but it may not succeed. Whether or not he succeeds, there will be pain. More pain than you have ever felt in your very short life — and I am trying to steel myself to be the strength that you will need. I am going to do everything I can to be your advocate to make you as comfortable as I can, and to get you everything you need to be as comfortable as possible as your heal. I know I won’t be enough — but I will give you all I can, and the pain will fade, as surely as the memory of what you are about to endure will.
But what scares me, what keeps me up in the middle of the night (like tonight) is the lack of a crystal ball to see what the future will hold for you, and for your special leg. So, I have this. This letter, a little window into the past for you. Here I will be completely honest, and hold nothing back.
Here, I will tell you something that I have admitted to very few. I don’t know if saving your leg is the right thing to do. There. I said it.
As you sit there reading this, I wonder how old you are. Ten years? Fifteen? Twenty? What color is your hair now? Is it straight or curly? A dark blonde? Or a deep, dark brown? I wonder how many legs you have, and how many feet. If you have both, then I wonder, are you in pain? If not, is it because you are having a good day, or is it because you rarely (if ever) have pain?
My greatest fear for you is that you will live your life in daily pain. That you will have limits others don’t. That being in and out of a hospital is something that you will always have to do. I don’t want that for you. I want you to be a child. I want you to run around and have fun with your friends. I want the memories of your youth to be about running around with those friends, riding bikes, playing at the park, camping with your friends and family, singing and laughing around the campfire, and going from house to house selling Girl Scout cookies, proudly showing off your badges that I know you will relish in earning. I don’t want your special leg to define you, though I know that whatever the outcome, it will be a part of your story. How I long that it will have been just a footnote — a reason that you wore a brace as a kid, but not really of any concern to you as an adult. Maybe it is something that you hardly remember at all. That outcome would truly be a triumph… through isn’t very likely. But hey, a mom can dream, right?
But let’s talk about what is going to happen in a few days, or rather from your perspective, what happened back in February of 2018. Firstly, I want to tell you that right now, I can’t even tell you what surgery you will be having. That’s up to your doctor. We have consented to two. Your doctor, Dr. Hoffinger from Stanford, will choose one after he sees your bone with his own eyes, and then have a nurse call me so I will know how long you will be in surgery.
If your bone is in one piece, he will perform a “Left McFarland Tibiofibular Synostosis”. This is what I am praying for, and what I am hoping will happen. In simple terms, a cadaver fibula- a dead person’s thinner lower leg bone- will be grafted onto your tibia. He will cut into the healthy top part of your bone, and the healthy bottom of it, attaching this new bone, securing it with special strong stitches made to hold bone together. The hope is that this bone will grow along with you, slowly straightening your tibia, and eventually having the two bones become one strong bone. This should make your leg stronger; maybe even as strong as your regular leg, and help your leg (and foot!) grow normally, with no metal left inside you. At least, that is the hope. It is possible that this could be it, that you could be healed (eventually) and that you would never need another operation again on your special leg, and that when you are finished growing, you will no longer need a brace. The chance of all this is very small… but I am clinging to it like a life preserver in the middle of the ocean, during a hurricane. But I’m clinging nevertheless.
The scary part, is that your doctor had never heard of this procedure when I first met him. When I first mentioned it, he kind of blew me off. The second time I mentioned it, he said it would be “inappropriate” for you, because your bone was still in one piece. The third time I mentioned it, I brought pictures of another little boy’s x-rays, and a study for him to read. The next time we talked, he admitted that he only looked into it to humor me, to get me off his back, and to prove to me that it was totally inappropriate for you. Boy was he surprised when he reached out to his friend and colleague, the author of that same study I brought him. He said you were an excellent candidate, and now, 4 months later, here we are!
Your surgeon is world-class. He is the absolute best, and I went through hell to get you into his practice. We may complain that the drive is sometimes as much as 3 hours one way… but I did it, and I am so glad. He tells me that the procedure is technically simple, and he is not at all concerned about doing it. If I had any doubts about his skill, there is no way in the world I would let him touch you. But to air on the safe side, he found another doctor who has done many of these. He will be coming out of retirement to be there with you, and to do anything that might help your procedure be a success. He’s the former chief of orthopedics at both Shriners Hospital for Children Northern California, and of Oakland Childrens Hospital. How about that? I fought for you to have a top-notch doctor, and now you have two. As you read this, and if things went well, you’ll be a pioneer that helped bring this procedure back to California, but with new protocols. If you don’t need to wear a brace today, and are pain free, this is probably the reason. If another little boy or girl walks in with a crazy bowed tibia like you did, this is likely the method of treatment he will suggest. All because of you and your special leg.
You have no idea how many people have prayed for you, and for this outcome. Pain free, strong, equal length legs. I hope that reading this, that is what you have. I even hope that reading this, that you have taken them a little for granted, because the idea that anything is seriously wrong, is simply something that doesn’t occur to you. The very idea that you could be reading this, laughing a bit or nodding your head, brings tears of joy to my eyes. If that is the case, let’s go right now and buy a lottery ticket, because girl, you are damn lucky — and I couldn’t be happier for you.
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Of course, there is the other possibility. If your bone is fractured, as I suspect it is, then he will perform a “Tibial Rodding” procedure. This carries no chance of being the only surgery you will have. That hurts my heart to say. If this is the route we have had to go, then the hospital will be no stranger to you, having probably now had several surgeries behind you. I hope that they have been not too great in number, and that you have healed well from them. Your doctor is extremely optimistic about your chances. He says with your attitude he thinks that you will go far, and have no problems adapting. In surgery, your bone will be cut where the break is, and straightened right away. The ends of your bone will be cut a little bit, but only so the bone will line up well, but you shouldn’t lose any length to your leg. A stainless steel rod will be slid up through your heel, through the ankle, and up your tibia. There, it will be secured with screws at the top of the tibia. The rod will be long, and will go all the way through the tibia, and through your ankle as well. Sadly, you will lose all function of your ankle (for a time) on this day. However, you will be wearing your brace all the time anyway, which doesn’t allow ankle movement. You haven’t had any ankle motion while wearing it for the last year, except at night when we’ve been giving you a break. On top of that, you haven’t had any ability to move it for the last week in a cast, or for the next couple months either, as you will still be casted. If you had a prosthetic leg, you wouldn’t really have an ankle anyway. So, it is what it is, and it’s not forever. As you grow, you’ll have this rod removed, and other less restrictive ones (not running through your ankle) will replace it.
Where the break in your leg is, human bone chips from the bone bank will be placed into the break site, along with synthetic bone morphogenetic proteins, manufactured under the name “INFUSE”. The combination of these will hopefully enable your tibia to heal like anyone else’s. But as you know — you are not exactly like anyone else. So, I will be holding my breath and waiting to see what your little leg will do.
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All this, your father and I have done for you, in the hopes that you will have two functional, pain-free legs. But we worry that this will not be the case after all. I don’t have a crystal ball. I can’t see into the future, and ask how you feel, what (if any) mistakes we made, or ask what I can do to make it better. I fear is that you will someday come to me in pain, and demand to know why I waited so long. Ask why I didn’t just amputate right away when I found out, and spare you all this pain, and all the surgeries, for the same outcome. Ask why I made you spend all that time in a brace, a cast, or in a wheelchair when you could have just been off playing soccer in a prosthetic…
Why am I doing this?
The answer is, it’s because I love you so much, and because I respect your ability to make your own medical decisions. I want to do everything I can to help you lead a happy, normal, pain free life. Your doctor, your father, and I all feel that the likelihood for you, with your unique presentation of this horrible debilitating disease, will have a good outcome. Having one less foot, or one less leg, will not change how much we love or care about you. It will not change the contributions you can make to this world, or in any way diminish who you are, or who you are meant to be.
But…
But if we were to amputate in a few days, it’s a decision that we could never take back, a surgery we could never undo, and a choice that we would take out of your hands, forever. Given your particular set of circumstances, it would seem almost cruel to throw away your shot out of fear of the unknown. In fact, your doctor wouldn’t even perform it at this juncture; we wouldn’t have to find someone else.
I’m not going to sit here and preach that we will absolutely, positively, put you through anything and everything to keep your leg either permanently or until you reach an age of reason— I wouldn’t do that to you. There is absolutely a line where we will concede that amputation is the far kinder option then the next surgery. We just have no idea where that line is, and I hope to God, that we never find it. Because even getting close to it means that your quality of life has suffered- and that’s not what we want for you.
I suppose that the other thing I want you to get out if this letter, is I want you to feel empowered. You are the author of your own destiny. You get to choose how you will live your life, and will live by the consequences, be they positive or negative. I never want you to look back and think that we worked so hard for you to keep your leg, that you have no choice but to continue the fight. You have a disease, and you will fight to overcome it. You have amazed me already so much with your resilience and adaptability, I have no doubt that you will win. But winning doesn’t mean having two legs or feet. Winning means that you are happy. Winning means you can do the things you want to do. Winning means you can run if you want to run, dance if you want to dance. Winning means that your life is not ruled by pain. Winning is measured by the amount of your spirit, not in feet. If winning means that you amputate, then do it. I will hold your hand as your heal, and come to watch you dance afterwards.
But in three days’ time, as we kiss you goodbye, and you are wheeled giggling from the Versed into the operating room, know that I’m doing this for one reason — I want to see you win, and I think this is your best shot. Today, I saw no other option than to take it. Whether this choice was right or wrong, I promise you, I will do everything in my power to help you win. I sincerely hope that reading this, you can now honestly say you won, and that we at least helped a little on your difficult journey.
I love you more than words can ever express,
Mom
