Tuesday, May 19, 2015

Plan B could be God's Plan A.

The medical field is not the only place where we like to have back-up plans. We have back-up plans in every aspect of our lives. Plan Bs and even Plan Cs, if needed. 

These plans make sense. Back-up plans are a good thing to have. Plans are good things to have.

But, I've come to realize, now more than ever, that our plans are really just that ... "OUR" plans.

We can plan as much as we want. Sometimes our plans work; sometimes they don't.

Plan A for La Petite Belle was that her sister would be a stem cell donor for her ... a perfect match.

Unfortunately, we found out yesterday, that K Belle was not a match for her sister. Yes, we were disappointed. It was a slim shot to begin with, but not slim enough for our God to work it out for us. I thought this could be what we prayed and hoped for ... that God would work this perfect Plan A situation out for us. That God would make it happen even if the odds were against us. But, it didn't happen.

We are taught to expect a miracle. To expect God to move. To expect good things for our lives. So, I did. And, I still do.

God could heal La Petite Belle in an instant. God could've made K Belle a perfect donor match for her. God could cause La Petite Belle's blood counts to miraculously go up. I expect that miracle to happen every time her counts get checked. Every. Time. It hasn't happened yet, but I still expect God to move. I still expect healing ... complete healing.

I don't know how God plans on healing La Petite Belle. All I know now is it's not through our Plan A, which was the best way according to the medical professionals. But, that's ok. While I'm somewhat disappointed, I'm encouraged in the fact that God will get us through this journey. "One day at a time, Mama" ... that's all I keep telling myself ... "one day at a time."

So, we move on to the "Plan B" which God can totally make our Plan A. He can use Plan A, B, C, D, E ... whatever we want to label it. He can use it to our advantage and to His glory no matter what we call it.

So, let's just call it "the plan for now" because it could change at any time ... here's how it will be unfolding in the next few weeks and months:
We will be starting immunosuppressive therapy June 1st. I don't want to get too technical with you guys and bore you to tears, especially since my knowledge has become so vast in all this {just call me Dr. Belle}, I could start to sound like a doctor myself and your eyes will skim over all the medical terminology and just scroll down to the bottom of the page. You can google "immunosuppressive therapy" if you're interested.

In a nutshell, the therapy includes three different types of drugs, which she will receive in the hospital over the course of 10 days. The drugs given help to accomplish one thing: killing the cells that are attacking the stem cells, thus causing the bone marrow to rebuild its supply of stem cells.We will be staying in ICU so that she can be closely monitored for any reactions to these drugs, not to mention the fact that her immune system will be compromised through this so there's always risks when that happens as far as infections go.

Until then, the pharmacy is ordering the drugs ... hello, not just any ordinary drug ... $50,000 drugs ... for one drug, mind you ... one drug! Yeah, crazy. Not a typical drug that pharmacies just have on hand.

We will also need to see a cardiologist to get a check on her blood pressure as precautionary measures before this treatment.

And, lastly the doctor will determine if her PICC line will be the best method or if we have to get a similar, more sturdy line in her chest. This was her main fear. She will be put to sleep and it would be surgically placed in her chest. However, surgeons will not operate or do something like this unless her platelets are 100,000 or more, which would require many transfusions beforehand. So, we're waiting to see what's the best way to approach that. The doctor does not want to have to deal with a PICC line that doesn't work halfway through treatment. Neither do we.

We have two weeks to get all these things taken care of before she's admitted.

We all have run the gamut of emotions through this. Please don't misunderstand me ... it's not that we don't trust God. We do. We always have and our trust only grows stronger the longer we serve and know God.

One minute you could be up ... the next hour, you're down. It goes for all of us. Mostly, Mom and Dad. This is definitely the most difficult thing a parent can go through. No parent wants to watch their child hurt ... physically or emotionally for that matter.

La Petite Belle struggles mostly with getting depressed about not seeing friends, not going to the pool, not hanging out in general. She's limited on what she can do. The nurse said she was in "bubble" mode yesterday morning after they read her counts, meaning her ANC (what fights germs and infections) was extremely low. But, La Petite Belle, feels totally normal. So, it's difficult for her to understand the severity of it.

I've been trying to let her do as much as possible ... having friends come over, allowing her to go a few places here and there, and to church if she wears that darn mask. She doesn't mind it at all. One girl said, "Why are you wearing that mask? It's not like we have Ebola or something." Mama almost lost it ... well, in my heart I did lose it ... but, then I kindly and sweetly explained what was going on to this girl. Duh, kid.

I hover a little. Just a little. Kinda my job.

So, that's the plan ... for now. God knows what He's doing. We may not know, but He always does. And, FYI ... the doctor said every test came back negative for every single possible cause for this. Every. Test. Negative.
So, there are no answers of what could've caused this. None.

But, it was not a surprise to God. He knew it was coming. He knew we would have to walk this out. He knows what's on the other side of it. We just have to trust.