It's Not A Tumor...And Thank Goodness For That!
Tuesday, January 10, 2012 at 8:10PMWhen you are holding your baby at the doctor's office, the last thing you want to hear is the word "cancer." I heard this recently and nearly lost my intestines right out from under me.
Baby Mo has been diagnosed with a skin condition called Juvenile xanthogranuloma (JXG). It is fairly common amongst baby boys and manifests in the first year of life. Dermatologists rarely see this but pediatric dermatologists see it often. After our appointment with a pediatric dermatologist today, we learned that Baby Mo's condition is extremely minor and is already clearing itself up on its own. The doctor was confident that it will go away within a matter of months.
The two small markings of JXG, shown clearly while Baby Mo eats his first Christmas cookie. GRATITUDE!!!
In extremely rare cases, JXG can be associated with a type of leukemia. That is why the adult dermatologist mentioned the word "cancer" two weeks ago when referring us to the pediatric dermatologist. When I heard that, I nearly passed out. I don't even know how I got Baby Mo in the car and drove home after that conversation because I was so distraught. My mother and mother-in-law were the unlucky recipients of some pretty hysterical phone calls.
The pediatric dermatologist we saw today was loving and reassuring and instructed me to stop Google'ing this condition.
"Google is not your friend in this case," she said. "But the scary things that can be associated with this are so very rare and this case is so minor and already clearing up."
I can't begin to convey the relief I feel. It was two weeks between appointments with the adult and pediatric dermatologists. That is two weeks of worry - or actively trying NOT to worry. I didn't speak of it to my fellow MommyBetas because I didn't want to give it too much credence but I was petrified! I went to all kinds of crazy places in my mind - places I should know better than to go.
And I thought about the Mommy Blogs that I've read by mothers who were not so lucky - mothers who had terrifying diagnoses about their little babies. Why were they so unlucky? How would I handle this kind of challenge in my life? These are questions I am hardly comfortable typing, much less pondering. I can't really wrap my head around the idea of fairness when it comes to parenting so I won't elaborate. I should stop this thought here.
I am so very grateful that my baby boy is healthy and I can (and should!) stop thinking about the more scary possibilities. This morning I was in the shower, trying not to panic about this impending appointment, and I had a thought that helped me get through this day. It went something like this:
Parenthood is going to continue to be scary, no matter what happens today. The world is scary. And I can either teach Miles that the world is a scary place or I can teach him that there are some things that will be scary but there is more beauty if you look for it. I want to teach him to go through life in search of beauty - not in avoidance of evil. So I have to do that myself. Which means no more dwelling on what is scary. Be in constant pursuit of the beauty that makes it all worth it. This has to be a daily pursuit.
Hug your babies tonight. They are part of what is beautiful about the world.
Reader Comments (10)
Hey Cuz, I Love u and that Baby Boy of your's, Just remember thoughts are things ,Think of the good one ,pass on the good one .Have you ever heard the saying . ( Act as if you are ,and you shall become)It is more truer then you think...Always here for you......Maria J Garcia if you ever want to talk call 510-278-6623
Natali you totally rock. I'm so sorry you had to go through that :( I absolutely understand that place where your mind goes. I can't even think about it. I ADORE the choice that you made. Seeing the beauty is perhaps the most challenging and powerful gift we can give out kids, and the only way we can truly have that gift be received is if we live it. That is the hardest part ;) Many blessings to you lovely Mama! So happy Baby Moe is gonna be just fine :)
Natali, my eyes got teary reading this because I can't even imagine the places your mind took you. Alas, you are one of the strongest mommies I know. You continue to inspire me. I love your perspective on this as well as on mommying in general. So glad to hear baby Mo is fine! And seriously, stop Googling :) I'm laughing because one of my favorite pastimes is Googleing...but whose isn't?
"Hug your babies tonight. They are part of what is beautiful about the world."
Natali, a hug goes out to you. You are part of what is beautiful about the world. :))
My gosh Nat. You are amazing for that moment of clarity you had this morning. The mixture of taking what the universe has to offer you and finding the beauty in it is inspiring.
I read several of the blogs you mentioned--the ones where moms and dads got that news you fortunately didn't get today. I can't imagine their pain, but I'm thankful they share their stories. Just like I'm thankful you shared yours.
Hugs and kisses to Baby Mo, mommy and daddy.
Wow, I am so glad Baby Mo is OK!! How scary! As for how you would've handled a different diagnosis, I'm sure you would've handled it beautifully, for the sake of your baby boy.
None of us want to think of how we would handle such a diagnosis. For us, it was the words "lung defect" that turned our world upside down 10 months ago. Your stomach churns and your heart drops, but you continue to put one foot in front of the other and stay calm because that's the only way you can make wise decisions for your baby. The EMTs who flew my nearly 6 week old son and I to Dallas, TX for emergency lung surgery to save his life said that often, mothers panic, and then the situation becomes all about mom and not the baby. The EMTs aren't able to focus on the baby because they have to focus on mom instead. I'm so glad God gave me the strength to be what I needed to be for my son. I fell apart after all of it was over, but made it through the tough parts just fine. We're just fortunate that emergency surgery saved his life and completely corrected the problem, because many times, it's so much worse. We kept saying, like you do now, "at least it's not cancer." He had a lobectomy, so he had the upper half of one of his lungs removed, but now, as we approach his first birthday, he is completely perfect.
Wow. Oh my goodness the agony, pain, torture and stress you must have been going through this past week, Nat. I am so thankful that Miles is healthy and doing well. My heart hurts for you. It is a parents worst nightmare - one I try not to torture myself with but I'm a worry wart and a cyberchondriac. I can't imagine how hard this post was to write because I'm struggling with how to respond in a measly comment. Lots of love to you, Miles and Clayton and am so thankful that your little man is healthy. Thank you for sharing your positive outlook - I'll remember it when I am freaking out. xoxo
In university, I developed granuloma annulare as a series of lumps between some of the knuckles on one of my hands. It also went away on its own after a number of weeks or months... It's so long ago now, but I remember being concerned enough to go to the university clinic and have it diagnosed. I was certainly weirded out at the time. When I saw the word granuloma in your post, it came back to me.
Congratulations on the good news about Miles' minor condition. When you have a child, they aren't the only ones who grow up! Being a parent is a "work in progress" that never stops because your kids keep developing even after they leave the nest. You are an awesome mom, and dad's right up there too. Best of luck in your "surviving Miles' childhood" reality show!
Hi there. I came across your blog when doing some volunteer work for the Histiocytosis Association. Please know that the HA is here to answer any questions you may have about your little one's JXG. Also, if you have a facebook account the following groups may interest you. They are full of parents just like you that have a little one fighting a histiocytic disorder.
http://www.facebook.com/groups/107738122581732/ ((JXG specific))
http://www.facebook.com/groups/171313569566535/ ((Includes all five histios))