Wednesday, June 7, 2017

"Do you have children?"

That's usually how it all starts.

I hesitate to answer sometimes, knowing that this one question could make the questioner sorry he or she ever asked. 

Yes, I have children.

The follow-up questions ensue.

And, after I've mentioned K Belle, Australia, and addressed the shock and awe of the possibility of me having an almost 20-year-old daughter, I mentioned La Petite Belle. More questions ensue ... how we came to Houston, our job situation, etc., etc., etc. 

At this point, I attempt to condense two years of suffering into a few minutes. It's pretty impossible. And, it definitely leaves the questioner in shock. Sometimes they don't know what to say. Actually, most of the time, they don't know what to say. I expect that. By now, I've had a lot of experience with that. I try to assure the questioner that it's okay that they don't know what to say and I don't expect anything out of them.

Just an everyday, getting-to-know-you "question and answer" can lead me to tears. It can lead the questioner to tears also.

This same question was asked by someone yesterday ... a sweet, innocent woman, making conversation. What was meant to be a few minutes of chitchat lead to close to twenty minutes of engaging conversation. Afterward, the woman said, that what I said to her "really ministered" to her and put a lot in perspective for her.

I get that. I'm thankful for that.
But, oh how I wish I wasn't the one who had to put things in perspective for people because my life seems so much harder than theirs. My life seems to cause other people to be thankful for the difficulties in their own lives. 

I'm thankful that God could use our circumstances to minister to other people, but, gosh ... I still wish it was different. Why can't I be the one getting things put into perspective by other people? I'd like that. I'm ready for that. 

This new reality of working an 8:30-5:00 job has been even more difficult than I ever imagined, especially with La Petite Belle being in the hospital again. I think about Beau and her all day long. I wonder what's happening. Not being there is definitely hard on this mama's heart, but this is where we are right now and we're desperately just trying to make this work. I just keep hanging on, waiting for life to change, for us to turn a corner.

I've been waiting to write an update until we had concrete answers as to what is going on with La Petite Belle, and now we do.

La Petite Belle was diagnosed with pneumonia over a month ago when we were inpatient. She was given antibiotics and seemed to get better and we were able to go home. We were home for almost a week when she spiked a fever. We ended up in the ER again and she was admitted yet again. Her pneumonia was still there and there was even chatter about removing her gall bladder. 

The gall bladder issue subsided. Thank God! That was not an option for our girl. But, the pneumonia persisted and showed not much improvement even with multiple antibiotics. After a week or so, and much discussion, the doctors performed a bronchial lavage and a lung biopsy to determine exactly what was causing this pneumonia. There are other types of pneumonia that aren't responsive to antibiotics because they are not brought on by bacteria or other types of infection. 

The biopsy revealed that the pneumonia La Petite Belle has is called Cryptogenic Organizing Pneumonia (COP). This was not the answer that we wanted. No one wanted it. The treatment for this is high-dose steroids. If you've followed La Petite Belle's story long enough, you know that this was treatment for the GVHD she had and lead to many more complications that she's still dealing with today.  The doctors are taking all of that into consideration when determining her dosing. But, this is the only treatment and it needs to get taken care of or it could get worse and even harder to treat.

It will be pulse-dosed, meaning one large dose once a week for at least two weeks. The doctors are hopeful that we will see some improvement after two weeks. Then, they will make a decision of how to wean the doses.

The danger with steroids is how much it suppresses your immune system. This leaves La Petite Belle susceptible again to all the viruses she fought last year (which live in her body) and any other type of infection. 

We are not expecting to get out of the hospital until La Petite Belle's need for oxygen is gone and her lungs are clear, at least anther week or two. When her lungs are better, barring no complications, we can be discharged again.

It's sad to say that hospital stays don't affect us as much as they used to. It's become our norm. La Petite Belle used to say, day-in and day-out, that she just wanted to go home. Now, she doesn't say anything and doesn't seem nearly as bothered by the whole thing.

She does miss Roxy Belle most of all and asks me if I can sneak her into the hospital sometimes. 

Granted, we all DO want to go home. But, we've become accustomed to this lifestyle. 
Is it difficult? Extremely. Is it exhausting? Definitely. But, it's what we have to do.

Please be in prayer for our amazing girl. She's still got more fighting to do. Pray that this pneumonia is gone quickly and the dosing of steroids can be minimal. Pray that La Petite Belle's body will not succumb to any viruses, bacteria, or fungus during this process. Pray for wisdom and guidance for the doctors as they make decisions regarding La Petite Belle's care.  

I ask also that you pray for another fighter ... Anais. Anais has her own story, but both of these amazing girls are fighting this same rare pneumonia, next door to one another on the 8th floor at Texas Children's Hospital. Anais' mom and I find it ironic that both of our teenage girls, who come from the same area of Louisiana, went to the same dance school for a short time, know so many of the same people, are now fighting this same "rare" pneumonia. Anais has also been at TCH for a long time and has recently undergone a second bone marrow transplant. 
As you pray for our sweet girl, please pray for Anais, as well.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and exp