The waiting is brutal

I would like to say it gets easier or at least more common place. This every six month jaunt to find out if our daughter’s cirrhosis has increased. If she has tumors that are cancerous and if her blood flow through her liver is getting worse setting her up for hyper portal tension ( that’s where you start throwing up large amounts of blood)

I think she was maybe 5 or 6 and we had been seeing her liver specialist since she was 4 months old. We were seen every 3 months back then. 8 viles of blood work every other time, since she doesn’t have a functioning spleen the blood work is another early detection sign to let us know her liver is failing without MRI’s and Ultrasounds. Anyway our most fabulous Dr said something about tumors and I remember saying in my naivety ” what would the tumors be”. I guess he thought I knew since we had been together for so long and he replied , we would test them for cancer …

I think that is the only time my body has completely frozen … I was so accustomed to the test and the open heart surgery and the follow ups after her septic shock they had all just become another tick on the calendar but to know my child is being tested for cancer every six months for some reason stopped me in my tracks. It’s funny the things that finally send you over the edge.

It’s been a whirlwind of a day. The day before these tests are never easy for me. I get super anxious internally and as much faith and heart knowledge as I have in the one Savior who loves her more than me, resting before during and after this test is not my strong suit.

Today I got a migraine to end all migraines. It came out of no where and scared me so bad because it hurt worse than my normal ones that it sent me into a full blown panic attack. It was like the perfect storm of events today. I resigned from my position at work, I have Zoeys MRI tomorrow and our whole family has just finally come above ground from a week of being sick. I think my poor brain had finally hit its limit.

Probably most of you are tired of hearing about Zoey. It is my every waking thought usually. I guess you would just have to be in our shoes to understand that even if you tire of hearing about her and all her journey this is what I write about. It’s like this little page is my outlet. The good news is you don’t have to follow along 😉. I write for me and my sanity.

So I am praying my mind will ease up a little and that I can sleep soon. We have to be at the hospital at 7:30 am which I am thankful for because she can’t eat or drink until it’s over around 12:30 and that’s a mighty long time.

I pray for good outcomes. I am aware we are not guaranteed that and I am eternally thankful for this journey. It has made me stronger wiser more intentional and more reliant on the only one who knows how all our days will play out.

Goodnight friends

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