Saturday, November 21, 2015

Day 100


Well ... we've made it to a milestone.

Day 100 is today.
It's been 100 days since my baby girl received her beautiful bag of stem cells from a generous stranger, who I hope we get to meet and thank in person one day.

We still have a long road ahead.
As Beau said to me, "We're still closer to the beginning than we are to the end."
In the grand scheme of this journey, that is true for our sweet La Petite Belle. Her journey will continue for the rest of her life.

At this point, our main issue is those pesky T-cells. Her percentage of donor T-cells needs to be 100% or close to that. Unfortunately as of last week, the results show she was only 14% donor T-cells, meaning the other 86% are La Petite Belle's. This test was after her initial T-cell infusion (DLI - Donor Lymphocyte Infusion ... that's the actual medical term for it) of 500,000 cells. We are set to return to Houston the Monday after Thanksgiving for another dose; this time the dose will be doubled to a million cells. It'd be great if you could join me in praying for a miracle with those T-cells and that the results come in from this week's test with a much greater percentage. God is able. And, He's always in the business of defying numbers and percentages.

La Petite Belle feels fine, other than getting tired pretty quickly when she attempts to do any type of physical activity. She rode her bike up and down our street with a friend last week. After 15 minutes, she was exhausted. Baby steps, baby steps.

She has had no sign of the main concern after stem cell transplant ... GVHD (Graft vs. Host Disease). She's also had no infections, only minor viruses that we dealt with following transplant.

Her personality has come back and she's starting to be her old jovial self. Only problem is that she's limited on where she can go and who she can be with, which means that bubbly personality is wasted on only us. I'm sure she'd love to be able to share it with anyone else besides us. And, we could have someone else respond to her daily, "I have a question." Actually, we get that about three to four times daily and some of the questions, there are no answers to. I'm sure she's figured out by now that Mom and Dad don't actually know everything.

 She's still to avoid crowds until six months post transplant, which takes us to February. She can go places, but there are all kinds of factors that have to be taken into consideration when and if she goes. We're taking one day at a time, one event at a time. I just wish I could hang a sign around her neck that says, "Please don't touch or breathe on me. And, could you wash your hands, please, even if you don't touch me? It's just good hygiene so that you don't spread your deadly germs to me or anyone else you come into contact with. Because, believe it or not, everyone has deadly germs on their hands and we could keep each other healthy if we all just washed our hands throughout the day.  I'm not trying to be mean. I do appreciate your concern and would love to hug you if I could, but I just had a stem cell transplant. Thanks for understanding." That's a lot to write on a sign.

So ... I guess I'll just stand guard over her like a Mama Bear and preempt hug attempts. You should see how I spring into action after I hear someone cough!

For now, we remain simply thankful. Thankful for all God has done in La Petite Belle's body, physically and spiritually ... for what He's done in and through Beau, K Belle, and me ... for what He will continue to do ... for proving Himself faithful.
What an amazing Thanksgiving for our family!

We still have a long way to go, and come January 1st, start all over with our high insurance deductible. We know this will be a challenge for us with me not being able to work full-time like before as of right now and the travel expenses and appointments still to come. So, we thank all of you who have given to support us through this. We greatly appreciate it!
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.

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