I'm angry. I absolutely HATE Neurofibromatosis. Today the only good thing that came our way, was all the love and support we got while we were waiting and after we got the results from today's MRI.
THANK YOU!!
Neurofibromatosis...How DARE YOU! While you have made me stronger...Your constant beatings are exhausting. NF...You are nothing but a thief!
Seeing the doctor every 3 months is weird for us....It sorta makes me feel like we are less of a priority now, but in fact Bailey's tumors are HIGH risk for causing major issues. The fact that she hasn't had any of those major issues, doesn't make me worry any less.
Today was our 'every 3 month' MRI...To check on Bailey's brain tumors. We also had a fasting blood draw, to check on what the new chemo is doing to Bailey's body.
The days that led up to today had my mind whirling. The "what ifs" have driven me (and I'm sure Bailey) crazy...But we tried to stay as positive as we could.....
BELIEVE--TRUST--THRIVE
I was in the waiting room...The possible outcomes of the MRI running through my head. I sent up many MANY prayers, knowing that our family is just plain tired of all this chemo stuff.
"We are so ready for some GOOD news Lord!" was my silent prayer.
But the news wasn't good.
Dr. Rush showed us the MRI scan from December....And compared it to the one from today. The word NO TUMOR patient wants to hear.....GROWTH.
My heart dropped to the floor.
The light in the room flickered...and I had to have Dr. Rush repeat what she just told us.
GROWTH.
UGH
She told us that we would continue with the same course of treatment...But if this tumor shows growth in the next 3 month scan, we will HAVE to take action......Dr. Rush puts her hand on my shoulder and looks me straight in the eye...."We aren't there yet...Ok?"
But this didn't make me feel any better.
I looked over at Bailey, who had her head down and was playing with her ipod....I am SURE she didn't quite understand what was just told to us. The full meaning of today didn't come until we were in the car leaving the hospital.
"My tumor grew?" Bailey asked me.
"Yes, honey." I replied.
"The one that can kill me?" Bailey continued inquiring
"The 'important' one, yes." I told her.
Silence filled the car and was almost deafening.
I throw my hands up. Not in a 'giving up' sense though. I throw my hands up to the Lord. I ask HIM to take this from us and DO something with it. Change it. Make it disappear. Have it help someone else....SOMETHING!
I realize the only control we have in this, is how much FAITH we have...And how we use that FAITH to make a difference.
We will continue to BELIEVE--TRUST--and THRIVE
because that's just how we roll!
THRIVE ON!
Praying for Bailey. Troy said he tried to call you when I read to him what you put on fb and on here. It's heartbreaking for sure.
ReplyDeleteSorry to hear about the bad results. I hate MRIs. I get claustrophobic when it comes to MRI. It's annoying having to lay there for 45-60 minutes (that's how long my scans are). I can't imagine having to do this every 3 months. What a pain in the...
ReplyDeleteThere is a quote from Michael J. Fox that I love: "People always ask me if I say to myself 'Why Me?' and I tell them, 'Why not me?"'
I believe the world is random and unfair. Its just how it is. You just gotta make the best of what you were given. I try to cheer myself a little by knowing that there are people out there that don't have anything at all. No running clean water, no food, no shelter.
I also believe in the power of the subconscious. Maybe Bailey should try talking to her subconscious. Check out the book "The power of your sub-conscious mind" by Joseph Murphy.
Hope you get better news on your next appointment.
Cheers,
Ilan
So sorry to hear the results. Sending hugs and prayers your way.
ReplyDelete~Kelly
Keep strong hun, but dont hold strong if you cant. Always here for you. sorry the results wernt as expected... Bailey is strong, she learns it from you, she will fight , you all will fight.. and will win.. in one way shape or form.. will win.
ReplyDeleteHugs tight
xoxoxo
-sissy steffy
Well that is sad. But we with NF should count our blessings.I Went to the tuberous sclerosis walk in Long Beach yesterday and people with that very similar disease were gravely disabled by it only a few were well enough to engage me in conversion. Same tumors on the body the have but they get seizures mental retardation and breathing problems. Seeing what I saw the made me feel blessed my plexiform is barely growing in my brain. I hope the best for your daughter and every body with our disease. My father lived with several tumor from nf and was did in by lung cancer at age 65, may we all have a long life. By the way if you want to know more about tuberous sclerosis go to tsalliance.org their diseases foundations website.
ReplyDeleteI can relate to the feelings you get when someone you love is told these words. I could not imagine it being my child. My mother has been fighting cancer the last 4 years. Currently we are also playing the waiting game. Her cancer has returned, however "where" it has planted itself we dont know. we are waiting until June to do a PET scan. This is to limit her exposure to the radiation. So we wait and wait to find out where the "bugs" are at this time. We pray that it isnt in any vital organs. Chemo will start shortly thereafter. We just all hate waiting knowing such a terminal disease is lingering in her body. I admire Bailey and your entire family for all the strength, courage and faith! Do throw your hands up to the Lord!! He listens and Bailey will be blessed.
ReplyDelete