Everyone urged me to do this...

I want to dedicate this blog to my kids... Sophie and Aiden. Many of you have asked me to start keeping a blog and I really think it will help too. I am pouring my heart out here.... so here it goes.

Last week my heart dropped into the bottom of my stomach when we heard those horrifying words.... Your daughter likely has Histiocytosis - X. She's eight. We haven't met with the doctors to confirm everything or verify to what extent the disease has spread in her body, but this was not exactly what we (or anyone for that matter) wants to hear.

Sophie - Christmas 2004

Our journey as a single parent family began when, in 2004 when Sophie's father and I separated after almost five years of marriage. She was 2 1/2 when we divorced in May of 2005. Though she had struggled with asthma since she was born, she was doing very well with her new course of medication and with breathing treatments. She was a thriving and very normal, happy kid. She loves most of the things that eight year-old girls are into... Horses, Dogs, Fashion Design and playing with her itouch. She enjoys playing with her friends and even her little brother, Aiden who is now almost two after overcoming some amazing obstacles of his own since birth. That's a story for another post. This one is about her.



Sophie on the first day of second grade with her baby brother.

She was even on a cheer leading squad until November of 2010 when we first noticed it. "It" she would soon nickname "Ouchie the bump". One evening, she didn't want to do cheer because her bump hurt so bad, so I knew something was very wrong.

Sophie loves Cheer 4 U and got over some of her shyness.

Sophie cried and said Ouchie hurt, so I took her to the dermatologist, where due to some scaly rash on her scalp, prescribed a dandruff medication that did not ease the bump or the dandruff. So, a few weeks later, we went back. Ouchie had then grown to about half an inch. Ouchie hurt more. So, the Dermatologist lanced Ouchie and, though he didn't get much, sent it off to be cultured anyway and prescribed antibiotics. At this point I had a VERY bad feeling. You know the kind of gut feeling you get when you know things just aren't right? Well, the antibiotics didn't work and the culture didn't show anything, but by then Ouchie was much larger and much more painful so we went back to the dermatologist who then did a biopsy of Ouchie. I watched as the Dermatologist took a scoop of tissue out of Sophie's head. She cringed, and I almost fainted, but I thought surely it wouldn't show anything. And, when it came back as a "Lipoma" (just a benign fatty tumor) we were relieved, VERY relieved... Then, we went to the head and neck surgeon the very next week. I still had a bad feeling, but was hopeful at this point that my butterflies were just me being overprotective and worrying too much (I'm a mom, it comes with the territory).

So, we walked into the Specialist's office and I thought, "this is gonna be a piece of cake! she did my son's tubes, I know her, she's got an impeccable reputation and this is gonna be EASY PEASY!".... I was VERY WRONG! After the Head and Neck Surgeon/ENT looked at the tumor on Sophie's head she said, "I'm not convinced it's a Lipoma". "Huh, What?, Did I hear you right?" She said it looked like an area of suspicious inflammation but likely not a tumor.... Okay.... Well, then I asked her, "Do you think it's cancer?", to which she said, "Well, skin cancer usually doesn't hurt"... So, I'm making the rounds in my head... Well it's probably just a bad cyst or an inflamed hair follicle... But then she said, "It really has to come out and get biopsied".

So, we scheduled the surgery for last Friday, the 28th. At 6:45 am, we left my house, with multiple stuffed animals in tow, to head to the surgery center for the procedure. She was such a trooper.


Sophie waiting to go into surgery 1/28/2011

 They walked Sophie into surgery and my ex and I walked out into the waiting room. The time really dragged by slowly. Until it had reached one hour that she had been in there. I got a terrible feeling in the pit of my stomach because she said it would be a very straight forward procedure and she might be in the OR a total of 20 minutes max for this procedure. So, when the doctor came out of surgery MUCH later than she was expected (at about an hour and 12 minutes, but who's counting), my suspicions that something was wrong were confirmed. She came out, looked at my mom and I, crossed her arms and began to describe going in to the lesion area and realizing that the original biopsy hadn't even scratched the surface of the existing tumor. We called my ex over and then the surgeon then explained that she removed the existing tumor/lesion and sent it off for biopsy and then as she went in further, there was a very abnormal inflammatory area beneath the lesion that was in the lining of the skull. She said that she also sent that area off for biopsy and that we would either know that day (Friday) or possibly Monday.

We were waiting with baited breath but then Sophie started feeling really bad on Saturday afternoon. I called the doctor on call because she had a very flushed look, a rash and a low grade temperature. The on call doctor said to take her off the Antibiotic, the pain med and give her Benadryl and Motrin instead. I did and she rested, and looked like she felt a tad better on Sunday. And then she got much worse. Her temp came back and the rash was red again and she just felt VERY tired. She never naps during the day and she actually laid down for over two hours. I called the on call doc when she woke up complaining again and said she really still felt sick. So, we went to the ER on his advice, and were given IV antibiotic, fluids and steroid. At discharge around 10, I thought I had a new child. Seriously. She was feeling so much better. Tired, but better... So, we went home and tried to get some sleep.

Monday morning, I called the ENT to see if we could get an appointment that day because she was still feeling rotten when she woke up. They then called us back and said, you guys need to come in and get the results of the biopsy because they are back and she can talk to you then. So, I took Sophie to the doctor and we got the terrible news I described earlier. Histiocytosis X. I can't even describe how it felt. When the doctor says, "Don't google it, It'll scare you to death", it's only natural to get worried. She explained that this disorder was serious, but that the cure rate was good now. She told us that she had already called the pediatrician and that she had also called the Oncologist at TCH with a referral for us. She said that it's treated in the Cancer Center at TCH even though it's not cancer.

What? Not cancer, but treated like cancer? That means Chemo and Radiation, and that my kiddo was sick people! I was NOT happy! Two sick kids? REALLY???

After crying a LOT Monday night, and talking to my mom in the hallway at Methodist about what was going on Monday after the appointment, we went home and tried to act like business as usual.... Easier said than done!

Tuesday morning, my dad had just had surgery and the babysitter was at my house. Sophie was complaining of being short of breath, and her rash was worse and she again had a temp. We then went to the ER. I was thinking, as we drove across town that I needed to be calm and remember what God did for Aiden over the last few years. He was surely going to protect her too! We called the Cancer Center at TCH to let them know we were on the way because we weren't sure that the ER was where she needed to be. They said definitely go through the ER!




Sophie drew a picture for everyone that helped her that day, I think.

  So, once we got there, got through triage, we sat and waited most of the day for them to give us answers. They examined her thoroughly and finally had a "skeletal survey" done and went home. Being there didn't yield much, but we did get moved to the front lines of the schedule at TCH. They said that normally people have to wait a long time to see this doctor, but that we could have Monday morning, the 7th at 8am. Sign us up! I said.... I am so ready for her to stop hurting, stop itching and stop having suspicious symptoms.

The silver lining in all this is that Sophie's still in pretty good spirits, even though there have been a few tears. I got the report from the skeletal survey and it says the lesion is still there. I called yesterday (Friday the 4th) and got the final biopsy report and it's not good. The words "diffusely and strongly positive" were used. I wept. I just wept and wept as those two forms opened up off the email. I had to look at the top of the paper and make sure they had the right patient.

After reading some more information last night, and reviewing the biopsy reports I did some research. I know she said "don't google it" but WHATEVER. I know I'm not a doctor, but I looked through papers authored by the doctor that will assist us and watched videos by him. I think that's likely to be relevant information. And, in looking at the information, the diagnosis of Langerhans Cell Histiocytosis is EXTREMELY RARE. Only 5:1M kids get it every year and even fewer adults. It tends to afflict children <10 y/o most often, and in the youngest children it can be fatal. There is no known cause and no known cure. Government funding is nonexistent because it's too small of a population that suffer from this disease.

http://www.histio.org/ is the link to the Histiocytosis Foundation.

I have spent the last few days sick... just sick to my stomach and confused beyond belief and numb. I have cried on the phone with my boyfriend, shared with a few of my friends who have been through their own share of medical stuff... but no one that has been through this exact thing because it's so rare. It's called an "orphan disease".

I am sad and scared and prayerful. I know God is good because he is still here loving me, even though I am not the best person. He loves me like I'm one of his kids, and he will never leave me. I have tried to give back this year by helping with CHLB and giving money when I can to the church, but we will lean on him again, just like I did when my son was so sick. I am uniquely equipped to handle this, and maybe that's why I feel so strongly that we're gonna be alright. I don't know how we'll get through, but we will. We just have to!