Langerhans' cell histiocytosis (LCH) - AuthenticForum
 
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Old 06-02-2010, 03:23 AM
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Langerhans' cell histiocytosis (LCH)

As most of you know, when Fletcher was born they rushed him away from me to another hospital's NICU. He was there for 1 week as they performed a series of tests on him to see what the red lesions he was born with, were caused by. MRI, CT Scan, Skin Swab, XRay, and a Biopsy. The biopsy results were last to come back to us. All but the biopsy, had no significant findings, no lesions on his organs or brain. It seem/ed that the lesions were just on his skin and they healed pretty quick and he has not had any since.

We just got the biopsy results back about 2 weeks ago. I was at his final eye appointment and I asked the translator about the results. At the time, she showed me the results and the thing that stuck out to me was LCH but she had no idea what LCH stood for or what it was. Nor did I receive any calls about it. So, of course, I went home and googled it all. Beside myself with what I read, I decided that if he REALLY had that, for sure, a doctor would have called me by that time. Anyway, on 5/24 Fletch had his 2 month well baby and I mentioned it to the American doctor but he said he had not seen the report but would look into it. Reassured me that Fletch was much too healthy (gaining nearly 5 lbs and growing 4 inches in 2 months!!) and that kids who have LCH are usually very ill. So I thought we were out of the clear.

The very next day, he called me back to tell me he got his hand on the report and sure enough, Fletcher's biopsy had come back positive for LCH. It is a very rare disorder/disease (I don't even know what to call it). I have emailed back and forth with Shi (her wealth of information is just overwhelming and comforting) and I feel that I should let you all know because now that I know my baby has it, I think it is something we all need to be more aware of.

At this time, there is no government funding for research because they claim it is such a rare disorder. I don't remember the stats exactly. There is a lot to read about and if you are interested the website all about LCH is:
Histiocytosis Association of America - Histiocytosis Association of America

Today the Dr called me, after getting in contact with a Oncologist back in the States and told me for now, because Fletcher showed only the skin lesions, he will have to have blood test and Xray every 6 months...starting at his 4 month checkup. He said that we'll have to do this for several years until he is old enough to tell us if something hurts or is bothering him. He told me it isn't something he can grow out of because basically it is a gene that has been switched on. His only symptom might be the lesions he was born with OR it could move into the bones or on other organs which would then require chemo to get rid of.

I feel consumed by this all. I feel psychotic when I look at him....every little bump on his skin, or diaper rash, or cry...I think it signifies something more. But the Dr told me that unless it is a very significant rash that wont go away after a few days, to bring him in and have it looked at.

I you-tubed LCH and saw some very informative videos, Doctors talking about it.

I feel numb, scared, over protective and sometimes in a state of denial. We all want our children to be born 100% healthy and when their health is put into question, it is just devastating as a mother. But, you pick yourself up for your kids and continue trecking along day by day. I feel guilty for wanting him to be born and wanting my pregnancy to be over so I could meet him. I question all the things I did while pregnant in case i caused it (they don't know the cause of LCH though)

If you took the time to read this, thank you from the bottom of my heart. I will keep you all posted as he starts his testing. Until then, I pray that his only problem with LCH were the lesions at birth but only time will tell.

If any of you have any experience with LCH or know anyone who has, please share. It helps us not feel so alone and overwhelmed.

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Old 06-02-2010, 04:26 AM
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Thank you so much for the information, Alex. I will keep Fletcher in my thoughts and pray he lives a long, healthy life and that the skin lesions are his only problem.
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Old 06-02-2010, 04:57 AM
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How scary Alex! I'm going to have a look at that website now, thinking of you all
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Old 06-02-2010, 05:16 AM
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My neice was diagnosed with LCH almost exactly 1 year ago. Her lesions were at the base of her skull, they were safely removed with surgery. Her case was mild enough so that she didn't have to undergo chemo. Luckily, as an older child, she had only a fraction of the complications most children with LCH face. She now seems fine, and doesn't seem to have any more lesions forming.
My sister has been amazing throughout the whole process, she even researched and consulted with the doctors who are leading research on LCH to confirm the diagnosis. I went to her FB page and pulled a couple groups that I know she is active in:
Histio Heroes Research Fund
Team Histio

Histiocytosis Association of America

I think these people were very helpful throughout the process for her. I'll keep Fletcher in my thoughts and prayers
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Old 06-02-2010, 06:06 AM
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Alex

i'm so happy you decided to post about Fletcher.

your strength throughout this is beyond amazing, and i admire you so much. i hope more research is done on LCH; once they isolate the gene that causes it, hopefully a cure will follow.

my thoughts and prayers are with you all.

i'm always here.
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Old 06-02-2010, 06:49 AM
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Wow, I'm surprised by how rare the disease is. I know how you feel, when my daughter was first diagnosed with Spinal Muscular Atrophy I was numb and horribly sad too

Fletcher will be in my prayers and I'll pray for strength for you too
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Old 06-02-2010, 07:15 AM
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Thank you for sharing Alex. I had wondered from time to time if anything ever came of all of that from his first few days. As scary as it all is; I'm glad that someone finally put a label on it so that you can be well informed. I will keep you, Fletcher and your family in my thoughts and prayers. Trust me, I know its easier said than done, but try to stay strong and think positive.

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Old 06-02-2010, 07:53 AM
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Alex!! I am sick right now thinking of what you are going through....I know how bad you wanted Fletcher, and to have this happen is so difficult. Just know that you did not do anything wrong!!! You are doing the best for him just by trying to find answers. I am praying for you and your family!!!
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Old 06-02-2010, 08:04 AM
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I am so sorry to hear this Alex. I will pray for you and Fletcher. Hopefully he will not have any complications from it. That is crazy that they didn't tell you about it. If you didn't ask the translator about the results, would you even know about it?
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Old 06-02-2010, 11:13 AM
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Old 06-02-2010, 03:36 PM
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Thank you, ladies, for your support and prayers.

Jenny, I "liked" those links on my facebook account. There seems to be a great support system on there.

Jody, I would have found out because i kept on the translators for results. What bothered me more is that they didn't see it necessary to consult with Fletcher's Dr. on base

Jennifer, my Mom says the same thing. I see all the positives and I try to keep those in perspective. He's a healthy, growing little boy. So, I'll keep trying to just focus on that.

Danielle, thank you for the kind words.

On a positive note, he let out a squeal giggle this a.m. We are going on a trip tomorrow. Our first airplane ride, to meet hubs in Okinawa. We'll see how i can handle traveling with 3 kids. I'm excited to meet Lisa (lili0623) and her family and explore the island. It'll help get our minds off things
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Old 06-02-2010, 04:59 PM
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My thoughts and prayers are with you Alex!

I also hope you have a fun, and chaos-free trip to meet Lisa!
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Old 06-02-2010, 07:27 PM
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Lisa, give Alex a big hug from us.

Alex, give Lisa a big hug from us.

you both!
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Old 06-02-2010, 08:56 PM
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Oh Alex, I had no idea. You are a such a great, caring mom.

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Old 06-02-2010, 09:43 PM
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Very sorry to hear about your son's diagnosis, Alex. I feel so sad thinking about what you're going through.

When i worked in pediatric oncology a couple of the kids I worked with had LCH. I'm not a doctor or anything though, I'm sure you know more about the illness than I do.

Similar to what you already said about concentrating on the fact that he's a healthy, happy, growing boy: a lot of parents say what got them through illnesses/treatment is their kid. You see them being able to enjoy their life even though there's difficult stuff going on and you share their experiences.

Children shouldn't have to deal with illness/treatment. It's just not right.

I'm glad Fletcher has such a loving, dedicated Mommy


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Old 06-02-2010, 09:59 PM
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Alex, although I have no experience with LCH, my brother was born with a very rare genetic disease, Glycogen Storage Disease (GSD). I remember what my mother had to go through. Back then they didn't know much about a lot of these rarer diseases, and he was misdiagnosed. The doctors told my mom that he would never walk. He is now a healthy adult living a normal life. Luckily he has a very mild case. Diseases often have a spectrum of severity, so I hope Fletcher has a mild case! Awareness is key. The more us parents talk and make others aware, the better chance there is to spur more research. It's amazing how much advance has taken place since my brother was born in 1980 in research of his disease. Back then children who had type I or II died very young, but now there are treatments that make that a thing of the past!

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Old 06-02-2010, 10:07 PM
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Alex, thank you so much for sharing. You are such a strong momma. I hope you have a great trip and HAVE FUN.
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Old 06-02-2010, 11:30 PM
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Thank you Bethany and Jasmin

Stacie You are so right, the more that discussions are had about some of these rare diseases, the more awareness there is out there. A very hopeful story about your brother! I too, hope that Fletcher is on the mild case of the disease, time will tell like it has with your brother. Like I wrote lastnight, I have been emailing back and forth with Shi, she is so helpful. But lastnight I thought that maybe writing about it to everyone, would make me feel better and maybe give me a different perspective. Today, I feel hopeful. I realize that I need to focus on the now, Fletcher is happy and healthy today and that should make me happy instead of constantly worrying about what the future might hold.

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Old 06-03-2010, 06:13 AM
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Alex - big hugs to you momma. I'm glad that an answer finally came and hope that the only issues he has with this is the lesions at birth. Hope that your trip goes well. Elijah and I just travelled to see family and it was pure chaos. I'm hoping that your trip goes much smoother than mine did. (the to and fro wasn't the rough part so much as the chaos that ensued once we got to our destination...put that's a whole other post.)
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Old 06-03-2010, 07:40 AM
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Alex, you have every reason to be hopeful.

You have a great, positive attitude, and I firmly believe that has tremendous power.

I hope you have a fantastic trip.
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Old 06-03-2010, 09:51 AM
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Quote:
Originally Posted by Dojoqueen View Post
Lisa, give Alex a big hug from us.

Alex, give Lisa a big hug from us.

you both!
Alex ^^^^^ yes please hug Lisa and have Lisa hug you for me!!! And I want hugs and smooches given to Vera, Mia, Fletcher, Joseph and Caitlin too!!! Sorry if I spelled Caitlin wrong....
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Old 06-03-2010, 10:11 AM
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Quote:
Originally Posted by hammerwoman View Post
Alex ^^^^^ yes please hug Lisa and have Lisa hug you for me!!! And I want hugs and smooches given to Vera, Mia, Fletcher, Joseph and Caitlin too!!! Sorry if I spelled Caitlin wrong....
oh yes...hugs and kisses to all offspringz.
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Old 06-03-2010, 01:08 PM
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I have been trying to log in and finally downloaded firefox... Alex I am so sorry about Fletcher's diagnosis.

Last edited by lizm75; 06-03-2010 at 05:46 PM.
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Old 06-03-2010, 01:18 PM
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Keeping your family in my prayers, Alex.

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Old 06-03-2010, 01:35 PM
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Alex, I'm so sorry to hear about Fletcher. How are you holding up?
We are thinking of you. Please stay strong. Sending love your way for you and your family........
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