Tuesday, November 10, 2015

Our lives will look differently.

I've posted before about how life's circumstances, especially like these, change you. They change everyone close to you. It can be a good thing or a bad thing.

Here's the truth ... There are definitely some places in my heart that have been hurt through this. I wake up some mornings and ask God to make things not hurt and, most of all, not allow hurt to turn into bitterness. I ask God to make all of the hard things change me for good, make me a better person, allow me to be a part of the bigger plan in this.

But, there are also some amazing moments that I hold close in my heart, that I go back to and thank God for, that I recall when my heart gets heavy. God's done some awesome things and I know He will continue. 

God's character never changes even though our life does. He is good even when our life is not or our life gets really hard. 
Suffering doesn't negate God's goodness.
He's good no matter what. That's just one of the many things God's shown me in this. When we know who God is and His character, it makes trusting Him a lot easier. He is good. The end. He can't do evil. It's not possible. This makes my love for Him even greater, knowing His plans would never be to harm me or my child or any of His children.

With all that said, I know that our lives will look differently from here on out. It's not like we will get home in a couple of weeks and "BAM", everything is back to normal. It won't be. It will be better for sure and progressively getting better. But, it will be different. This will be a life change for us and especially for La Petite Belle. She will be dealing with check-ups for the rest of her life ... hospital visits at Texas Children's Hospital (yes, throughout adulthood), all kinds of testing, and the anticipation of test results. I hate that for her. But, again, God is faithful.

DAY 89+ 
We are a little under two weeks from being able to return home. We're "planning" on leaving next weekend.

The doctor doesn't love us going home right now because we still don't have all the results from those  T-cell tests. A test was done last week before she got the additional donor cells and then blood was drawn yesterday for another test. It may take a couple of weeks before any sort of change shows up from the T-cell infusion.

However, because La Petite Belle doesn't have any issues ... hasn't run fevers, shows no signs of GVHD, no infections, kidney and liver functions are fine, counts are stable ... there's really nothing here to hold us, especially since her PICC line got pulled out yesterday.

Yep. It's out. Not because we wanted it out but because it was getting clogged every week and La Petite Belle was having to get poked anyway, so why keep it in? We opted to take it out. 

The only reason it was kept in was because of lab draws and possible infusions. If it wouldn't have kept clogging up, we would have kept it in case she would have needed more T-cells. If that does happen, they are able to infuse through an IV. But, we are hoping and praying that the first infusion did the trick.

Now, here's the not-great news for us ... we will have to travel to Texas Children's Hospital once a week for now because of this T-cell test. This particular test is only done here and can't be done through our doctor in Lafayette. So, for now, we're driving once a week. The results of each test will tell us when we can start coming here less and less and begin to use our Lafayette doctor for lab draws.

So, yes ... we will be home before Thanksgiving. Praise God!
But, we will be returning to Houston weekly for now.

Please pray for these donor T-cells to do their job and that any remaining cells from La Petite Belle would be gone. Also, pray that the donor cells would continue to grow and multiply, so that her counts can keep rising. It has been kind of a slow process, but we know the marrow is working. 
We're also praying for La Petite Belle to remain infection-free, bacteria-free, virus-free, germ-free, etc.

Thank you for your continued prayers and support!

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.