Medical Message: Histiocytosis & Spotlight on the kids

Histiocytosis sucks. First let me set your mind at ease. Sophie doesn't have any new symptoms.. But, as I scheduled the next set of scans, I am starting to see what the people in the Histio family are talking about when they talk about how horrible this disease can be even if it isn't multi systemic. Sophie so far, only has it in her skull and we are praying to God it hasn't spread. Monday she will undergo more testing to see whether it has. It's terrible in the sense that every time she has to have a scan it's done with IV contrast. This poor child is TERRIFIED of needles. Terrified!!! So, Monday, it's two tests, both with contrast AND blood work at the doctors visit and whatever else they decide they need. Don't get me wrong, I want to know if it's spreading, but this is awful... And, if the tests are positive, imagine how devastating chemo can be on children. A central line, 18 pills a day, vomiting, fatigue, weight gain, the list goes on and on... It tears your heart out even when it's not your kid. Why them? There just isn't an explanation that's good enough... None. So for now, we are preparing ourselves by resting now, eating right (lots of fruits and veggies) and laughing a TON while we can.

Sophie is also worried about a little lump behind Aiden's ear (as am I). I am taking him to the surgeon on the 12th to have it looked at. It is extremely rare that two children in one family are diagnosed with LCH, but it has happened, and my prayer is that is not the case. He's been through WAY too much already at his young age.

I am overwhelmed with fear and trepidation but I also reminded Sophie tonight when I tucked her in WHOSE we are. I told her that Jesus loves her and that she's never alone and neither are Aiden and I. Tonight when I was tucking her in, she asked if I was okay, and I told her "Yes, but it's important for you to know that Mommy and Aiden have plenty of people loving us and praying for us, too, just like you do." I wanted her to know that I'm not alone, because I know she worries about me and whether I am hurting inside.

I am, but I know that it's all going to be okay no matter what happens. God will use my strength to help other people. He will give me the armor to stand up and face whatever it is that lies ahead for us. I have seen the Lord rally around us when he was all we had left. I have seen him heal, with supernatural healing, a little boy that almost didn't make it. I just know that even if one of my children doesn't see tomorrow, the promise is that no matter what, He is right here. Helping us find peace in knowing that even the ones that go before us don't really die, but live forever with Him. I know it's a morbid thought, but it helps when my heart goes to the dark places to know that He's got us covered.

I wish Histiocytosis was not a word we have to know. I am glad I know what it is, though, and that you do too. Please pass this blog link along to anyone you can think of that doesn't know about the disease. Awareness is HUGELY important. It's key to helping us find a cure for this dreaded disease.

Goodnight friends,

J