Treatment Day 1

Today we start Bella's treatment at Primary Childrens.

It will consist of ATG/Cyclosporine.

ATG is a medicine from a horse serum that contains antibodies that help suppress the immune system.

It will be given for 4 days (runs over 6 hrs. each day).

She can have some serious side effects to this medicine, and thats why she is admitted-to be watched closely.

So we will be here at least 4 days, but could be here up to 2 weeks (fingers crossed).

She will be given steroids for 2 weeks to help with the side effects (chubby baby coming right up) 

Cyclosporine is a long term medicine that she will start today as well, 

and take orally for most likely 6 months to 18 months.

They will check her CBC each week, and it should start making a difference at about 6 weeks.

If she is NOT responding at all by 6 weeks, they will take her off of it and have to do a bone marrow transplant.

If her levels are increasing at 6 weeks, they will continue it and check her at 3 months...

this time frame is a pretty good indication if it will work or not.

If they are still increasing, she will be on the medication for about 18months.

This medication has some pretty gnarly side effects taking it long term-

which have been hard for me to accept.

One of the side effects is hair growth on the face!

Seriously?

My little girl is gonna be hairy with a unibrow?

How am I suppose to take that all in?

I guess we are gonna need to invest in some wax and razors...haha

She can also have thickening and growth of the gums, which sounds so painful.

I know all these are temporary, and in the long run she won't have them-but it is still hard.

I know it is all worth it if it makes her feel better.

I have been so nervous the last couple days, wondering how she is gonna react to all this medicine.

My mind wanders, it keeps me up at night, and fear definitely creeps in.

I constantly am reminding myself to NOT fear.

I need to have faith and know that she is being watched over and Heavenly Father knows what she needs.

I am grateful in these times of fear that we even have a treatment plan for her!

I'm SO glad that Matt and I can both be here with her, and that she can have that comfort today.

My prayers have never been more sincere, and my heart has never been so hurt for someone.

We are fasting today for her, hoping that she responds well to the side effects short term,

and that this will cure her long term.

Oh how how we love this little girl.