Grateful MOM following Langerhan's Cell Histocytosis diagnosis on my 3 month old son!

                         This is how big the area got from 3 weeks of age just looking like a tiny bruise and this is at 3 months later when we were diagnosed!


Today, like many days that I have to go in to town (30 minutes one way, yes, I live in BFE in the boonies) I have my youngest son, momma's boy & sidekick with me AKA: Brenden! He was #7 in our family and was a surprise when our first daughter together between my husband and I was only 8 months old. From the get go this little boy gave me gray hairs. I was working half a night shift at the hospital when I came home to bright red bleeding when I was 9-10 weeks along with him. Scared to death as I have NEVER had this happen in any of my other pregnancies I called the doctor and was basically informed if i was miscarrying nothing you can do about it at this stage but rest so that weekend I called in to work and laid in bed most the time. I bled off and on for 2 days. I remember my heart dropping to my stomach seeing that blood as even though he was a surprise I was already in love with him (I figured with hubby's track record of 4 girls prior that this one would be a girl too)  I had bought a home gender prediction kit just for fun to see if it would be accurate and since I was bleeding I had it there & just did it when the bleeding subsided in which it said we were having a girl again! Finally, I got a hold of a nurse that I had gotten friendly with during my pregnancy with our daughter the year before and talked her in to making the dr do a sonogram since I had not yet had a dr appt.  So the sonogram was scheduled & I was on pins and needles thinking we had lost our baby. Went in with the fullest bladder imaginable they started the sonogram and there was our little baby heart beating away and everything looking great! Whew, how relieved this MOM was to know our baby was still with us. The remainder of the pregnancy went great with no further bleeding other then the false labor we had a good month prior to his due date. Due to my advanced maternal age..ha ha...I was 36..jeesh..I had to have a genetics counseling with sonogram so we went and had it done. That morning we had finally agreed on our baby girl's name of Ava (yes, we just knew it was another girl due to my poor hubby's track record) and the ultrasound tech asked what we wanted...I said well, he has 4 girls at home so he wants a boy and I just wanted a healthy baby (though boys are easier..lol) and as soon as, I mean literally put the wand on my tummy there it was in all its glory (me having 2 boys before was positive I saw what she was seeing but I didn't say anything) cause she said to my husband "BOY, did you get lucky..It's a BOY!" Complete shock..my hubby never said a word almost all the way home..shell shock, I think so, and then it was back to the drawing board on names! We did a few days later do another sonogram to get it on DVD and it was confirmed we were having a little boy. He was due August 17th and we went in a couple times with contractions but no real dilation so we had our dr appt on August 17th (DUE DATE) just for him to get eviction orders for the following day! August 18, 2009 we welcomed our son together and hubby's first biological son in to the world weighing 8# 8 oz..my little porker out of them all.  Our family was now complete, yes, I had my 4 kids as I wanted that were biological but I also have three step daughters that are not considered step..they are MY daughters. The great thing was all four of my bio babies were born in the same hospital I was and ALL four born in the exact same labor room. How neat is that and with 3 of them I had the same nurse! I love small town hospitals!

We had a cancer scare when he was 3 months old. He had a bruise like area on the side of his neck at 2 weeks of age and I thought the car seat strap had pinched him but it kept getting bigger, raised, red and crusty. Took to our local dr to be told it was a healing heamangioma for weeks and it wasn't getting better so I demanded a dermatology appt. Thank God, I had the instincts to know as a MOM and a nurse that something wasn't right. Of course, at the beginning they told us it was something else, can't remember what that was but we went back in 2 weeks and it was still the same so the dr biopsied it. Then two days before Thanksgiving as we plan to celebrate with family the doctor himself called me early evening time frame to inform me that Brenden had Langerhan's cell histocytosis..whew a mouth full, didn't think anything about it, had never heard of that in all my nursing years and he says "You have to get Brenden up here to Children's mercy first thing in the morning for full blood work and body scan! This diagnosis can easily be cancerous and it normally spreads to organs and bones" my stomach hit the floor, what? Cancer in my newborn that doesn't happen to us! The doctor said to me" What ever you do, do NOT go researching it on the internet. All the stories are bad so DO NOT do it!" I was stunned and I didn't research it because what you don't know with prognosis is better at this time.  I was sick...dry heaving in the trash can and called my husband who was grocery shopping to get home NOW the dr just called! We had to call my family as we were celebrating the next Thanksgiving early and my mom cancelled as no one would feel like being joyful until we got the news on Brenden's results. My world was crashing down around us. We got up early the next day loaded our baby in the car and took the 1 1/2 hour trip to the Children's hospital. The bloodwork Brenden didn't even cry even though mommy was he was such a champ. Then on to the full body xray scan...we got to stay in the room and I remember the techs trying to get him to lay down and not move but by then he was screaming at the top of his lungs thrashing around and again mom is crying and we got to stand behind the xray "tv" screen and as a nurse I was checking every picture on that and I didn't see anything that looked bad but I'm no radiologist so then we were given our baby and told they would get the results to our doctor. Thanksgiving day our doctor (who was on vacation visiting family) personally called us to give us the results that he was clear no cancer but we needed to start high doses steroid treatment and see an oncologist regardless so we did and now it is just a big scar of his shoulder. They say it can come back but if the spot clears up 99% of the time it does not reoccur. I thank God for our dermatologist and was so mad at myself that I screwed around with our home town doctor who kept telling me he knew what it was and this MOM was overreacting. So needless to say, Dr Newell is our angel on Earth. He knew about this diagnosis but had never seen it so since he has had Brenden he has two other children have the same thing and he knew to look for it sooner now! Last year, Brenden was officially discharged from seeing him every 6 months! We are in the clear Thank you God but I still have to make sure dr's check his lymph nodes and internal organs on each dr visit to make sure no enlargements and feel his spot once a week.

Now he is a healthy, comical, fun, crazy, silly little 4 1/2 year old boy who enjoys Spongebob, playing with cars and loves military airplanes, helicopters, dancing, preschool, tormenting his sister who he says is his "buddy" and all that boy stuff! He is truly a joy to his MOM and dad and is a big momma's boy! I am so thankful to God for watching over our son and that he is healthy to this day and to my husband who then allowed me to be a stay at home mom to him and our other 6! That was the day I learned very well that things do happen to people like us and not other people and that you should always tell those you love each day how much they mean to you and show them love cause you never know what tomorrow will bring! Writing this stir a lot of emotion for this MOM and to know that we were lucky to have our little boy even if he has added a few gray hairs to MOM's head that is fine that is what my hair stylist is for!