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The Beginning of My Journey With My Son’s Rare McCune-Albright Diagnosis

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Dear Meg,

Wow, you just took four kids to the doctor’s office by yourself. You go girl! That’s no easy task! You have the cutest little 2-week-old ever. You don’t know this yet, but time is about to fly like it has never flown before. I wish I could warn you. A weight check appointment for an infant and a well check appointment for a 3-and-a-half-year-old are usually pretty simple, right? As you will soon find out this seemingly simple day will go down in the books as the bombshell day. The day everything changed. The day your fast-paced life will come to a standstill. The first moment in your life that will fill you up to the brim with fear.

It’s coming soon, but for now you sit in the doctor’s office with the “ducklings” — that’s what you call them. Bailee did fabulous and is gaining weight perfectly. Now its Jack’s turn. Aside from little Jacky walking a little crookedly, he is doing great. Totally healthy! You casually mentioned this to the doctor and he asked if you guys could stay and get a quick X-ray after the appointment. You obliged and pointed the ducklings towards the radiology department. The staff was a little annoyed you had so many kids with you, because this meant that Jack would have to do this alone, something they thought would be a hassle — but you knew your little man. He would be fine. He was confident; he trusted you and could totally handle a solo pelvic X-ray.

The waiting room was big and he was on one end and you were on the other. You explained to him that someone would call his name and he needed to go with them to take a picture of his bones and that they would give him instructions and he needed to listen to them. He said, “OK,” and quickly went back to playing with his brother and sister. The nurse came out and called “Jack Keeling.” You smiled a little and watched your little peanut stand up with confidence. I saw your eyes fill up with tears of pride. He proudly walked passed you with his little half-smile, half-smirk and just before they went through the doors, he turned and said bye to you. Deep breath, Mama! Little do you know this is just the beginning.

Jack sitting on a hospital bed with a beach-themed curtain behind him and a superman towel.
Jack, Megan’s son.

The series of X-rays took only a few minutes and he walked out those same doors with his dimples on full display. He was proud of himself and knew that he made you proud, too. You gathered up the crew and headed to the car. After taking the kids to the doctor alone, what is the only logical thing to do afterward? Well the Chick-fil-A drive thru, of course! You made it home a short time later with your hands full of yummy food and hungry kiddos. You don’t know this, but right about now the doctor you just saw is picking up the phone and dialing your number.

Baby Bailee was still in the car seat all tuckered out from the morning, fast asleep. You hear your phone ringing, answer and quickly recognize the voice on the other end. You step outside as he tells you the radiologist had just called him after seeing Jack’s X-rays. “There is some sort of lesion on Jack’s femur.” You are a little confused, not realizing what that meant. This doctor knows your family. He knows you are about to move to Armenia of all places. The movers were coming in just a couple weeks. He knew that. And then, the “bombshell.”

“Mrs. Keeling, I’m really sorry but the radiologist thinks this might be cancer.”

Everything surrounding you at that moment fell silent. You were leaning against the house with a blank face. It sinks in for a second. The doctor explains that Jack needs an MRI right away and suggests putting everything on hold until then. You kept repeating the word “OK” and then that’s when the inevitable happened. Tears. You aren’t really a crier so this is a big deal for you. The conversations wraps up. The plan is to figure out some insurance logistics and then wait for the call to schedule the MRI, which will probably be in a few days. That was rough, but you got through it!

Here comes the hardest part. You have to go back inside now. The kids are in there. Jack is in there and has no idea this is going on. You look hesitant. You also need to tell your husband but you don’t want to call him. That would end in a hot mess situation. Texting is a little too casual for the “C” word, but it will have to do. And what about your parents?! They are coming in two days. You have to tell them. Your friends — it’s Thanksgiving tomorrow and you are going to “Friendsgiving.” There is no way you can hold it all in. You toss out a couple texts and hold your breath. Is this really happening?!

I wish I could tell you that you are doing well. That although you have a long road ahead of you and so does Jack, everyone will be fine. I wish I could tell you that he doesn’t actually have cancer. It becomes apparent that you can’t even look at Jack because you feel so bad. He is oblivious and completely unaware. So innocent. You want to just scoop him up and leave, I know. You can’t do that though. I know you understand. It’s hard, but you are going to do great.

This is just the beginning. Things will get worse before they get better. You will find out in a couple weeks that he doesn’t have cancer. It will be a relief, but it’s still complicated. What he does have won’t threaten to take him from you, but it will make his life hard and painful. I know you can handle this. In fact, you were born for this. There is no cure. No real treatment, only damage control.

You two will be a team and you will rock this. You will help take part in the research, advocacy and logistics of his care for McCune-Albright syndrome (MAS) and fibrous dysplasia (FD). Part of your research will lead you to a Facebook group and having a #FDfamily, where everyone supports and loves each other. You will also learn, especially with rare diseases, that sometimes doctors aren’t always right the first, second or even third time. But your search will lead you to the National Institutes of Health (NIH) where you will have the top experts looking out for your son. You were given this job for a reason and you can do this! Is your heart going to break? Probably multiple times, but the only thing worse than your heart breaking is his heart breaking.

Jack will do all the physical work and will always be there to give you his famous “true love kisses.” Any fear or stress will disappear. So don’t worry. He will make his soon-to-be “gazillion” doctors fall in love with him and your heart will swell with pride.

Lastly, remember that although you are an active participant in this journey, you will not be the main character. This is Jack’s story. You will be there to help support and guide him through this road of life that just took a sharp and abrupt turn. Keep a smile on your face no matter what. Surround him with love and he can feel secure. Let him know he is not alone in this journey. Remember he is watching you. If you are scared, he will probably be scared. Stay happy, strong and positive for your little man, your peanut, the little boy who you love more than any combination of words could ever accurately describe. He will flourish because of the fearlessness he sees from you. He will tackle his obstacles with that same little smirk over and over. He will make you proud, so proud.


Meg, two years from now

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Originally published: May 6, 2016
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