I mentioned a few post back that we would be having an appointment with a masto specialist. It is rapidly approaching (this coming Monday-the 10th). I thought I would try to fill you in a little bit on thoughts on it and some ways you can be praying.
Mastocytosis is an extremely rare disorder. Less than 200,000 in the United States have it. So there isn't tons of information available. Thus far, for Abigail, we know that she has it dermatologically, and that she has had a mastocytoma tumor from it. We suspect that her GERD (gastro reflux) is from it, as well as some other belly issues she has, but have never had this 100% nailed down.
So the doctor we will be seeing is a pediatric oncologist and hematologist. I don't know what all to expect from the appointment. I am suspecting that we may end up with a referral to a gastro doctor. I had wanted to avoid this because it will likely mean being put under again to be scoped. However, I also know if Abigail is have mast cell issues in her belly we probably need to know and react accordingly.
My second thing that I am a little uneasy about, is that sometimes they do bone marrow biopsies on masto patients. I am not going to allow myself to be bogged down with all the reasons they do this, and I'm not certain that they will or will not do this for Abigail. But none the less, the thought of a bone marrow biopsy in and of itself is a little overwhelming.
My third 'fear' is dieting restrictions. Abigail has a nut allergy (peanuts and tree nuts) but we have been able to manage this. Some people with mast cell disorders have issues triggered by foods with high histamine levels. (seriously if you didn't go look at this list of high histamine foods, you should.) I think pretty much every one of Abigail's favorite foods is on there. Although we definitely indulge sometimes, we eat, overall, really healthy. We eat very little meat, and do lots of whole foods as well as organic stuff. The idea of having to limit lots of things from a little girl who loves brussel sprouts, eats tomatoes straight out of the garden, and thinks fruit is dessert is disheartening to me. I would absolutely be willing to do it to keep her healthy. It's just a hard thing to think about.
Overall I am just ready to do this appointment and figure stuff out. But like with so many other medical things, it's hard to suppress some of those 'what if's' that like to swirl around in my brain. I have taken it to God over and over again, not allowing the fears to swallow my joy. It's a battle though. Mastocytosis has so many unknowns and is completely unpredictable (not much unlike NF really). So in reality I have no idea what to think or expect. With NF I can say, Abigail will likely get tumors. Where and when isn't known, but we know what we are up against. Masto ranges from the dermal kind that can be outgrown, some that causes anaphylaxis over and over with no triggers (I can't say that I haven't lied in bed before wondering what would happen if she went into anaphylaxis in the middle of the night and we didn't know) all the way to mast cell leukemia. I am truly hoping to hear that hers is still only dermal and there is some possibility that she could outgrow it. However, I want to be prepared to hear what I need to hear to take care of my daughter.
So if you all would once again join us in prayer as we get ready to learn more about our daughter's masto I would be extremely grateful. I will update sometime after the appointment. It is out of state, and Jason will be making the trip with me. We have also found a really fun (free) park nearby that we are looking forward to checking out with Abigail. Mostly though I want my days before the appointment to be filled with joy and not fear, and I want to call on Christ when I start to feel scared or overwhelmed.
'The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship. And by him we cry, “Abba, Father.”'
Crying out to my Abba, Father,