Disappointment. It happens to everyone. Having Neurofibromatosis, I have learned to prepare myself for disappointment. It's a horrible way to live, and I do try as much as possible to believe that good things are bound to happen, but the roller coaster life of having this disorder continues to break my heart, over and over.
The last time my daughter received chemotherapy was on July 6th. Her doctors reduced the dose from 6 ml, to 4 ml and we were sure that Bailey would do well.
She left for camp the next day and things were good.
Until I got the call 2 days later. Bailey spiraled. Her blood count was hovering just above 1, and her fever was high....VERY high.
She spent 4 long days in the hospital and her blood count rose, but she has never completely recovered. I never thought 4 mL of anything could be so damaging.
We were to get back on track last Wednesday....An MRI and this time 2 mL of chemo...But after Bailey's blood draw, everything was cancelled. One step forward, two steps back, is the dance we are doing when it comes to Bailey.
No answers, just disappointment.
My mind is whirling...Wouldn't the MRI be necessary, EVEN more now, since she has been OFF chemo for a month? Bailey's doctor assures me, that if SHE felt it was necessary, we would be doing chemo and MRI's.....NECESSARY? I think a tumor that DOUBLES in size while ON chemo, qualifies as "necessary".
Leaving your child's fate in the hands of someone else is hard. Trusting that THEY know what is best and going with that is not something I am good at.
We left the hospital last week feeling uneasy. Part of me wanted to run back in there and demand an MRI...demand some answers! The other part of me wanted to leave the hospital and never return., because the pain of doing nothing, felt worse than the pain that therapy brings.
We have to continue to trust. Trust in the Lord, and trust the hands of the doctors who really are giving Bailey the best. We have to focus of Thriving....Because that's the only way Bailey is going to come out of this.
Thrive On!
No words I can type here seem enough somehow. I know your fear so well. Sometimes I wish I had a MRI in my house just so I could personally monitor if my Timmy's bilateral optic gliomas are growing as he is in the midst of puberty and I'm seeing new fibromas develop in different places all over his body what seems like daily and I question and fear what is going on in his brain.
ReplyDeleteSending hope and prayers and positive thoughts your way.
Bailey WILL thrive. NF will NOT control us! NF will NOT win!