Tuesday, September 15, 2015

A Third of the Way There

That's where we are today - Day +33.

Lots going on here. Some may think we are able to just lie around all day and do nothing. But, actually most of our days are filled with activity.

At this point, we go to the hospital three days a week to visit the BMT clinic. Every Monday, Wednesday, and Friday, that's where we are. The visits are LONG. And, not like your typical "It's ridiculous that I have to wait an hour to see the doctor" long. I'm talking three hours, maybe four. And, that's if we have no other appointments at the hospital. Last Friday, we were there until 5:00 pm due to extra cardiology testing.

Needless to say the visits are exhausting for La Petite Belle. We have to wake up pretty early for them and my girl still hasn't been getting the good sleep like she used to get months ago. She crashed on the couch when we got home yesterday.

Along with her clinic visits, she is enrolled in Houston public schools online and is in the process of having a homebound teacher come to the apartment twice a week to help her. However, she does have to log in and do assignments every day. Try that while you're on Marinol. Should be interesting.

We have a home health nurse who comes once a week to change her dressing and check on her.
And, she is currently in the process of getting ready for in-home physical therapy.

As far as how her health is now post-transplant, she's doing well. Her blood counts are all rising or holding steady. Her blood shows that she is 100% donor cells right now. In fact, her blood type is even changing over. Crazy, right? Her DNA is 100% of someone else. Mind blown.

Tomorrow she is scheduled for her first bone marrow biopsy since transplant. They'll be getting a closer look at her marrow.

She's on a ton of medications. She's not loving having to take so many pills each day. We're also constantly changing medications to make sure levels are right.

The one issue we're dealing with right now is how her body is going to handle and fight something called CMV. CMV(Cytomegalovirus) is a very common virus which most of us have in our bodies. We don't even realize we have it because it causes no symptoms and just lies dormant. However, for someone with a weakened immune system, it could cause concern. La Petite Belle was positive for CMV before her transplant, so her body still has some of the virus. Her donor was CMV negative. So, basically her donor cells don't recognize the virus or know how to fight it. Her levels of the virus are rising. Her medications have been changed in hopes of her levels dropping and not continuing to rise. 

If you're looking to pray for something specific, that would be it ... that her body would be able to fight CMV and the levels of the virus would go down. Actually, our prayers each night include that God would keep her free from any infection, germ, bacteria, virus, etc.

My heart aches with gratitude. I don't know if you have ever felt that, but it literally aches. But, it's a good ache. I thank God every day for where He's brought us, what He's doing, and what is yet to come. Overwhelmed with gratefulness. Humbled before my awesome and mighty God.

Also, humbled by all of you who join with me in prayer each day for my baby girl's healing. Humbled by your generosity. Humbled by your compassion. Humbled by your love.

Only 66 more days to go until our +100. Although we may not be able to go home on that exact day, we are hopeful that it will be very close to that.
Continuing to believe for God's best for La Petite Belle.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses. Thank you for your prayers and support!

1 Comment:

Julia D said...

Thanks so much for your honesty in sharing. After going through some really tough things in my own life recently, I can easily identify with so much of what you write and it helps me to manage my expectations of myself and others.