Please pray for our sweet Ace!

Ace has been diagnosed with Langerhans Cell Histiocystosis (LCH).  What is LCH?  "In Langerhans cell histiocytosis, certain white blood cells, called Langerhans cells, grow out of control.  In a healthy person, these cells help defend against infection. But in histiocytosis, the cells multiply so quickly that they build up and can damage the body instead of protect it.  Except for their rapid growth, the cells are normal. This disease is not cancer. But it is similar. Doctors who treat cancer and blood diseases also treat histiocytosis.  Some people with the disease have excess cells and damage in only one site or organ in their bodies. Others have excess cells in many places throughout their bodies. The bones are the most common sites of damage - mainly the bones in the skull but also in other places, such as the spine, arms and legs. This disease can affect many body systems.  About 80% to 90% of children recover from this disease with treatment. Sometimes it goes away slowly on its own. It can be serious, even fatal in severe cases. It can also come back later in life."    (http://www.seattlechildrens.org/medical-conditions/heart-blood-conditions/langerhans-cell-histiocytosis/)

At this time, the only organ that we know that the LCH is affecting is Ace's skin.  He had a rash that started on his neck around December 30th.  It got progressively worse and spread up into his head and back.  We took him to the pediatrician on January 8th.  Ace saw Crystal, the PA at our pediatrician's office as well as Dr. Boecker.  Crystal and Dr. Boecker were both concerned with Ace's rash as well as a few purplish/red "blood spots" that Ace had in his groin area.  They prescribed a steroid cream and said if the rash got any worse or did not get any better to bring him back in.  The next morning, we woke up and gave Ace his bath.  The rash had definitely spread and seemed to be much more red.  I texted pictures to Crystal for her and Dr. Boecker to review and they asked me to bring him back in.  Dr. Boecker switched him to a different steroid cream and referred us to a dermatologist, Dr. John Anderson.  She also ordered blood work due to the blood spots.

We went to the dermatologist on January 16th and saw Dr. Anderson.  He examined Ace and decided to do a biopsy on one of the lesions.  He also had his dad, who is also a dermatologist examine Ace.  I thought at the time that the rash was related to something Ace was allergic to.  Dr. Boecker had already run bloodwork to test for blood disorders such as leukemia due to the blood spots in Ace's groin area, so I thought we were in the clear.  Dr. Anderson then explained that the rash looked like LCH.  He told me not to go home and google it as it would just scare me.  I made it to the waiting room where I fed Ace and googled it on my phone.  He was correct, I was scared.  Dr. Anderson assured me that he would get the biopsy results as soon as possible and that we would work together to make a "game plan" for Ace if it did turn out to be LCH.  On Monday, the 21st, Dr. Anderson called and told us that Ace's biopsy came back as positive for LCH.  I have to say, Dr. Anderson was really good with delivering really bad news.  He assured me that though this is not a curable disease, it is treatable.  He had already called and talked to Dr. Boecker and they are referring him to TX Children's Cancer Hospital to see Dr. McClain.  You can read about Dr. McClain here. http://txch.org/cancer-center/histiocytosis-program/   He is the main doctor at the largest histiocytosis clinic in the world.  We are extremely saddened by the diagnosis, but so thankful to Crystal, Dr. Boecker and Dr. Anderson for their care.  From what we have read about other cases, Ace was diagnosed very early and we feel that this will definitely help in treating his symptoms.

We feel extremely positive.  At this point, all we know is that the LCH is affecting his skin.  We meet with Dr. McClain in the morning and will find out what tests Ace will need to determine if the LCH is affecting his skin only or if he has multi-system.  Ace seems to be feeling good.  He has had a pesky ear infection and is on his second round of antibiotics for that as the first round was not able to get rid of it.  He was running a low grade fever until 2 days ago, but that is now gone and he seems to be feeling good.  We saw Dr. Anderson again yesterday.  He removed the stitch from the biopsy and Ace did not even cry.  Dr. Anderson is very happy with the way the rash looks.  We are hopeful that the ear infection was just a normal infection and is not related to the LCH.  Ace was all smiles and "talking" to his grandparents and his big sister today before we left for Houston.

Please pray for Ace and our entire family.  We feel so positive.  Ace is a tough little guy, but it is of course terribly hard on all of us to know that this is something Ace will have to go through.  Toby and I could not be more thankful for the love and support that we have received over the past few weeks from our family and friends.  Our parents, grandparents, sisters, their husbands, aunts, uncles, cousins, and friends have all rallied around us over the past few weeks.  Toby and I were discussing how difficult this must be for our parents.  We know that they love Ace and are worried about him, but we also know how much they love us and wish that we were not having to see our little boy go through this.  Please also keep Tinsley in your prayers.  Our top priorities are to make sure that Ace receives the best care possible and that we are able to treat this before he will ever remember it.  Our other top priority is to make sure that this has as little effect as possible on Tinsley.  She has so many people who love her and are caring for her.  She has done great, but did not like Ace's band aid over his stitch where the biopsy was done.  She is such a caring big sister!

I will update on Ace and the rest of our "goings on" as soon as I can.  I am really behind on my blogging as you can see, but will definitely get caught up.  Thanks for checking in on us and for keeping our Ace in your prayers

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