Luca is upstairs asleep and Ja took Vinnie to the store for a much needed rice krispie treat ingredient run. So I'm sitting here in a quiet house with a moment to update...
We have the results of some of the preliminary tests and blood work and the Immunologist I saw today confirmed that I do indeed have Systemic Mastocytosis. My mast cell levels came back 46 times the amount of a normal patient. Also, he said he believes we can rule the immediately deadly forms of the disease involving leukemia.
We loved the doctor and he seemed to have a great amount of knowledge on the disease. Going forward he is going to be the gate keeper, as he put it, for my treatment. Ja and I just bubbled and babbled on and on during the appointment about how relieved we are to finally have a diagnosis and how excited we are to move forward.
After the initial glow of hearing the news that's it's most likely not leukemia wore off I started to hear the other things the doctor said. When Jason came home from work this evening I found his mood had changed as well as he also started "hearing" the words of the doctor as well.
For now, the game plan is to treat the symptoms and to keep attacks like what happened last Monday from happening. He started me on a barrage of medications and I am excited that maybe I can start feeling more like myself again.
And so now we start the process of pinpointing exactly what category and stage of the disease we are facing. Over the next four weeks I need to get a bone scan, see an oncologist to have a bone marrow biopsy done, and see a GI doctor to have the stomach, spleen, and esophagus biopsied. Then after all that jazz is done I meet back with the immunologist to get a more detailed game plan together.
So that's that for now. I leave it there and promise to move on to happier blogging until we have more news.
4 comments:
Oh my goodness lady. I can't imagine what you are going through right now but we are all praying for you in new jersey and thats for sure!!!! This news is heart breaking but I am glad to hear you have a great plan and team of doctor's. It's a lot of work ahead especially with all the testing and docotor visits but it is all for the best. Keep those spirits high and keep blogging no matter how down you may be. You have a wonderful family to get you through. I love you so much peaches-n-cream and I hope you start to feel like yourself soon. As a mother that can get so lost at times but I know you can get through all things with the Lord! You are bearing many crosses everyday and you will be truly blessed. Please get some rest and do those crafty things that make you happy. The mind can make you go crazy with stress, anxiety, doubt, everything...so distracing it with keeping busy really helps. you once told me many years ago that worrying is like a rocking chair, it gives you something to do for awhile but it doesn't get your anywhere. very true! May god give you peace to be able to get some rest with those two busy boys! :) Go Phillies! (well they are not doing so good yet but we shall see)Love you lots. God Bless, Freckle Face xoxox
Dianna I'm so glad to hear that you are on your way to finally finding out what has been going on with you. I pray that they continue to help you on this course of healing along with God's help and direction I know you will be wonderful! Thanks for the update =)
Dearest Di,
Please, please keep sharing the journey and don't apologize for the news not always being "sunny," because you are so very loved by all who check in here. We truly want to share the burden. Even if we're hundreds of miles away, we can (as they did with Moses) hold up your arms as you face the battle. Just so sad to hear all the tests you have ahead - but encouraging to know you're having very competent physicians on the case. And may the Great Physician guide them all the way...
HUGE hugs and all our love,
Ma and Pa Gums
"You are my sunshine, my only sunshine you make happy when skies are grey, you'll never know dear how much I love you, please don't take my sunshine away." Your smile always reminded me of the sunshine, that's why I nicknamed you sunshine. I sing this to Christina all the time and everytime I do I think of you, so keep smiling sweetie, don't take everyone's sunshine away :-) . . . Even when telling us of your news and all that you are going through you still protect us, I can tell, you don't want to burden us, you keep it inside how hard this is for you. Thank you for sharing, I am praying so hard that god's love with lift you up and keep you positive, and help you through these tough times. Much love, Lori
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