Tuesday, December 29, 2015

No Guarantees

Those words keep ringing in my head after yesterday's clinic visit.

We were expecting to hear a plan ... a plan that would give us more of a guarantee, a plan that would help us have less anxiety, less worry, a plan that would help us have more of a guarantee that La Petite Belle could finally be rid of this and be on her way back to a normal life. Of course, that's what we wanted to hear.

But, that's not what we got.

The doctor told us, "There are no guarantees."

So true.

There really are no guarantees in our lives on this earth. None.
There is only one guarantee ... God, His promises, His Word.
It's the ONLY thing we can cling to or hold on to.

Doctors can really only do so much.
They do their best to help, to heal, 
but God is the ONLY ONE who can guarantee us healing and life.

It's definitely burdensome to think about each day as not guaranteed for any of us, especially if it involves our children ... to think each morning when you wake up that this day with the ones you love might be the last ... or how can you make the most of of each day, each moment. That's heavy stuff. But, it's definitely what I think about each day. Thanking God for "this day" like we so often do in our daily prayers has taken on brand new meaning for me. I cherish each day that I have with my family, another day to share with them. I continue to pray for a long life for my children and stand on God's promises of healing for my sweet La Petite Belle.

Today is Day 138.

Here's where I get all "medical terms" on you guys.
La Petite Belle continues to be what they call "mixed chimera" in her blood and marrow, meaning she has started producing some of her old DNA in her blood. Overall ... in her marrow she is 93% donor, which they'd like to see at 100% of course, which where she was around Day 60 or so. And, she is even lower in her T-cells, 31% donor in her marrow, 13% in her blood. It's all a numbers game and so very complicated. The nurse practitioner said yesterday that La Petite Belle's case is very unique, the disease itself at her age and what we face now with these T-cells.

The doctor shed some brand new light on the details of the DLIs (Donor Lymphocyte Infusions - T-cell infusions) that La Petite Belle has received.  She had received the 500,000 cells and then the one million cells with not a whole lot of change in numbers. The doctor explained, in a very intriguing way how this is expected to work, which I could never explain here because it involved genetics and cell terms I don't even remember. But, the gist of it is this ... Of the thousands or millions of T-cells that they are infusing into La Petite Belle from the donor, it really only takes one cell to be compatible with her remaining cells and DNA to knock them out. One out of thousands, one out of a million ... one cell, or a group of cells. That's what they are looking for to do the job.

The only issue with continuing to infuse is that the more you do it, and the more cells you use, the higher the risk for Graft-Versus-Host Disease. So, it's a balance of not wanting to do too much to make matters worse, since GVHD can be very serious, and not wanting to do anything and wait too long to intervene. With that being said, we are scheduled for do another DLI with five million cells on January 8th. Kinda scary with that amount there, but La Petite Belle has done great and had no reactions to the other infusions. That's a good thing.

My husband asked the doctor about how long we would continue doing this and the discussion came to the guarantees. Good thing is her blood counts are good. She no longer has Aplastic Anemia. The doctor said, "She could live to 100 with these counts. Problem is the risk is greater that the disease would come back because she is making her old cells. But, there's no guarantee that the disease wouldn't come back if she were 100%." So, there's that.

There are no guarantees. Of course, we want her to be 100%. And, the doctors will continue to monitor it and make adjustments accordingly. They will continue to check the percentages and determine if we will do more DLIs or what.

The other good news is that there are no markers for disease in her cells. So, although she has some of her cells, there is no sign of disease. They will continue to check that and I'm assuming another biopsy will be in her near future, possible in another few months, depending on her blood work.

We are continuing to pray that these donor cells would multiply and that the one cell needed to knock out her cells would show up and do its work. We are praying for good blood work results (good counts and  a higher donor percentage) and believing in God's guarantee, which is complete healing. Thank you for coming beside us on this journey. We appreciate you lifting up our girl and our family during this time. 

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.