We have a diagnosis.......

We want to thank you all for your prayers. To say we covet your prayers right now is an understatement. It has been a huge comfort to know so many are praying. We also have seen some answers to prayers. For one, we are home from Springfield with a diagnosis of Opsoclonus Myoclonus Syndrome (OMS). This is a rare autoimmune disease (1:10,000,000) which will require a very aggressive protocol. While we were extremely sad to hear this conformation, we were also glad to be talking to a doctor who has seen and treated OMS. No one else we have seen has treated it. The prognosis is uncertain. The goal is to "reboot" the immune system and stop the attack on her brain before permanent damage is done (we hope there hasn't been any yet). The doctor told us that he believes that OMS is always a result of a neuroblatoma. Despite our negative tests for neuroblastoma, he believes that the immune system can fight them off before they are detected. The tumor cells mimic the the cells in the protein on the brain and the immune system seeks to eradicate them both; hence, her balance and eye movements are affected. They think the ear infection she had at the onset of the symptoms some how was the "spike" that started the immune system's reaction.

So tomorrow morning we head to the hospital to start the first of three drugs -ACTH. This is a hormone that causes the body to produce the steroid Cortisol. Please pray for Annabelle as this can have many side effects - weight gain, irritability, sleeplessness, and lower immunity are just a few. She will start on a high dose and gradually taper over the next year. Yes - year. This is another matter of prayer. We will have to use extreme caution to keep her from getting sick. That means that we will have to greatly limit our exposure to people. This seems like a mountain to me... actually much of what we face seems like a mountain to me. So with the love of our heavenly father, we will start climbing one step at a time. We are also probably facing a central line being placed in Annabelle's chest this week while we are in the hospital. This will be "more humane" the doctor told us than sicking her tiny veins over and over. Please pray that it will go smoothly as well. She will be under anestheisa again, which her body doesn't like. Also, it can get infected as her immune system is lowered. I will share the next steps as I can. There will be more next week.
Please pray for:
- Our girls (and Grandma and Grandpa Keller) that they will enjoy their home away from home.
- The uncertainty of Annabelle's reaction to this powerful drug.
- Wisdom for us in managing her care ( it feels like such a responsibility)
- Insurance approval of the ACTH protocol.
- God to be glorified through this trial.

This passage has been an encouragement to us:
Psalm 57:1,2
"Be merciful to me, O God, be merciful to me!
For my soul trusts in You;
And in the shadow of Your wings I will make my refuge,
Until these calamities have passed by.
I will cry out to God Most High,
To God who performs all things for me."