April Showers Bring May Flowers

April was simply a horrible month for me. I went into April feeling like I was barely hanging onto my rope, and April just knocked me off and I hit what I feel like is rock bottom. Broden has been working tons of mandatory overtime so he is rarely home which leaves me to do the housework and yard work. I love doing yard work, but when that is all I'm doing on only a few hours of sleep then I get really burned out. Why am I only getting so little sleep? One word: Ian.

Which leads me into saying why April was such a horrible month. At Ian's 9 month wellness appointment, I asked about Ian's mole like spots. I kept having a feeling that I needed to talk with the doctor about it, and so I did. And that is when I got the news that no mom wants to hear: "Your baby has a rare disease." My heart has hurt for two weeks as I have tried to process the news that Ian has Mastocytosis and the possibility that he could get leukemia or sarcoma. It all makes sense now. It makes sense why Ian has been fussy, uncomfortable, clingy, sleeps very little (gets up every 1-2 hours during the night), and has poor digestive.

What is mastocytosis? Well, let me explain. Mastocytosis is when mast cells start to accumulate in the body's tissues. There are two types: 1) Cutaneous where the mast cells accumulate in the skin, and 2) Systemic where the mast cells accumulate in various tissues of the body. Cutaneous mastocytosis is the better one to have because systemic mastocytosis has more problems and can lead into cancer. Mast cells are part of the immune system and have histamine to regulate allergic reactions.

Ian has mast cells accumulating in his skin so he has lots of "spots" or lesions. When these spots get irritated, rubbed/scratched, the skin becomes red and the spots become like hives. If too many spots get irritated, then Ian can go into anaphylactic shock because all the mast cells mimic an allergic reaction even when no allergen is present. So we now carry an epi pen with us because we don't know when he could have trouble breathing. We don't know if the mast cells are accumulating in other tissues.

Symptoms vary with this disease but here are some: fatigue, nausea, abdominal discomfort/cramping, musculoskeletal pain, flushing, tachycardia, syncope, anaphylaxis, etc. I could go on for a while about this condition, but I feel that this sums it up without getting too technical.

Ian's blood work to check his liver, blood count, and serum tryptase levels came back normal. This is a good sign since it means that it is most likely cutaneous mastocytosis. However, we will still have to do more blood work and skin biopsy once we see an immunology specialist at Primary Children's hospital. We are currently on the cancellation list because it sounds like it might not be until sometime between July and September before we can get into to see the specialist.

So April has brought many showers into my life to the point that I can barely take one day at a time. I was barely doing each day before this news so I have to be honest and say how much I am struggling. I can barely make it through each day.

 I only am writing this post to let everyone know what is going on and so I don't hear "look at those spots" or "what is wrong with his skin". It cuts my heart every time I hear those words because it is a reminder of what my son has to go through. It is a reminder that he is getting more spots each day. It is a reminder that my time with Ian might not be as long as I want it to be. And this is a reminder for everyone to think before you speak and to be considerate.

And so the only thing I have left to do is pray. I pray for Ian that he will be okay. I pray that I can accept whatever happens to him. And the only thing keeping me a float right now is knowing that families are together forever and that no matter what happens I will see Ian again. I am grateful for that knowledge.



I sure love my little boy and I will do everything in my power to give him the best life I can!

Broden and I only ask for your prayers for our little Ian. We are praying that these April showers will bring our family May flowers. We sure could use some flowers in our lives right now.