Monday, July 6, 2015

Has June Come and Gone Already?!

    Well, well, well... Seems like this summer is ending just as fast as it started. We had a great May with school ending in all A's for both girls and both girls making Allstars for their local softball league. Team JoMi has had great success with fundraising to assist with our neutro related medical bills and the coming conference in Seattle. The first Team JoMi softball tourney was a success and we are so blessed to be a part of a community who loves their players and prays for their players. The month of June brought with it a war...a sepsis war. 

  For many of you, you might ask what a "sepsis war" might be. For others, the 6 letter word sends ice through your veins because you know the fight it demands. Most of you know by now that as well as Joeli and Mileigh, I am congenital cyclic too. My counts dropped as usual but this time is wasn't the normal fatigue and general ill feeling till my marrow responded. I knew something was off. I went to my hemoc and confirmed that my anc was indeed zero. My hemoc is one of the most compassionate physicians I've ever known or been treated by. I was instructed to come back if fever developed and hit neutro protocol. The next night fever came and I knew something wasn't right so my best friend took me in. I alerted my hemoc and he called ahead to prepare the ER for me. They were phenomenal with their care and interest in what I had. They'd never heard of it before and were all about learning. They treated my pain, ran labs, cultures and took all necessary precautions to keep me safe from outside sources of infection. I was ultimately admitted and given empirical IV antibiotics to fight potential gram negative and gram positive bacterias in my blood. The antibiotics ran while we waited for culture growth. Come to find out there was a gram positive bacteria there.
 
    My best friends were at my side and many were praying and helping with the girls. Our church family went above and beyond anything I've ever experienced and we are so blessed by them. This admission included several really painful nights, countless blown veins, blood draws, and neutro explanations to those who'd never seen anyone like me. I'm thankful for friends who take such interest in what affects my daily life and what took my Joeli's life. It's a very surreal feeling to lay in a hospital bed and watch medication run into my veins that she was denied.  Medication that would have saved my Joeli was now being given to me. That entire scenario leaves me speechless. 

   One of my friends took pictures of this admission. Many say that neutro doesn't have a face or a look. I disagree. Maybe you will too after I post a few of those. As a grown woman, wife, and mother I can honestly say I don't know how my sweet girl endured that pain for the amount of time that she did with nothing to relieve it and nothing to heal the rapidly spreading bacteria. Folks, sepsis is no joke. It will take your life. It DID take hers. I don't know what God's plan for me is but I know it isn't done yet because I'm still here. Eventually my marrow did respond with the help of those antibiotics and my neutrophils returned. It took a while to feel normal again but I think I'm getting there. Whatever "normal" is right? ha!

   Thankfully I had a full week to recover before taking the girls to GA camp. I went with another friend from church and we took 6 girls. They had a blast and so did we. I think those girls taught us way more than we taught them.

   Now...I am 10 days away from my flight to Seattle to attend the National Neutropenia Network's Family Conference where the experts attend and any new information is given. This is also an opportunity for fellow neutro mamas to meet or reconnect. A safe zone, if you will. Where neutro is common place and everyone's fridge is filled with neupogen. Where people get that tylenol doesn't touch our pain and neutro does have a look. I look forward to meeting more of these precious mamas and reconnecting with those who are now my neutro family. Last year I took the girls so they could attend the kids camp but this year it's just too far so I'm going with a friend and we plan to make the best of our time across the U.S. from home. We have a mutual friend there and plan to visit with her too. I'll be bringing back any and all information for my hemoc and hope he is able to attend next year.

  If you have a minute, I'd greatly appreciate you sharing the blog and/or our gofundme page www.gofundme.com/teamjomi Moreso than the sharing, please pray for us...pray for me as I travel in the next 10 days, pray that infection stays away and pray that our marrow response is quick. Pray for Brelan (our non neutro)...for understanding and for time with mama when she needs me. Pray for Chad and I, that we balance our relationship with each other and our girls and teach them what they need to know and how to love big and to SING LOUD!

  Thank y'all so much for reading, for commenting, for encouraging, for sharing, for praying...there's no way I could take this approach and perspective without that.  Be Blessed and SING LOUD! I look forward to hearing from y'all and to meeting some of you in Seattle!