Wednesday, August 13, 2014

Zayne MRI story form-Jessica Warren

I found myself heavy that morning.  Jake had already left with Ayden for his own doctor’s appointment and I was getting ready to take Zayne to his MRI.  I was already texting Gina trying to gain some strength for what felt like was gonna be a heck of a day. 
Why am I worrying about this?  I have done so many MRI’s
And I feel like I’m doing horrible with this one. Need a little
Extra help today…Mama needs prayer L
Gina texted back:
Gotcha covered!!  Breathe and think positive thoughts!!
Love you!!!
After that Gina sent me a picture that said “Let your Faith be bigger than your Fear.”  She was right.  I was allowing my fear to steal the fact that my baby was doing great!  I had the opportunity to make today AWESOME!!  I tried shaking myself.  I put on my make-up and dressed for a good day. 
After heading upstairs and getting his port accessed by his favorite nurse Annie we headed downstairs to sedation.  I made the trek with Zayne in my arms back to the imaging room.  “Mom I want you to take a nap with me.  I want you to stay in the room with me while they take pictures.”  “Ok baby.”  We entered the room and saw the beautiful big tree painted on the machine.  The doctors were laughing and trying to make Zayne feel comfortable.  I sat down on the bed and felt my little boy panic.  I moved my arm to brush my hair back and Zayne grabbed it and put it back around his belly.  He did not want me going anywhere.  I pulled him closer.  “It’s ok bud…I’m staying right here.”  I gently kissed his forehead as the doctor came over and put the medicine into his tube.  Zayne started to relax.  He lifted his head suddenly and looked at me.  “MOM.”  He said scared and his eyes wide.  “MOM.”  I held him close and whispered “I’ve got you baby. It’s ok…Mommy’s got you.”  He went limp and I pulled him closer whispering “Mommy loves you sweetie” in his ear before standing up. 
The saying is Waiting is the hardest part, and it’s true.  Until your baby is back in your arms and you feel him breathing again it’s a constant mind game.  I had to call my sister because my mind had begun to run away and there was no retrieving it without help. 

After it was all over I was sitting in the playroom eating a piece of “pizza” Zayne had made for me with Velcro mushrooms.  I was telling him how yummy it was when Brad, our doctor popped his head in and said “I have the scans from the MRI, wanna take a look?”  I put Zayne into the stroller and wheeled him down the hall to an exam room with a computer.  Zayne sat in his chair playing with his stickers he had received from the sedation nurse.  “Ok…let’s see here.”  Brad began.  I saw an image of my sons brain pop up onto the screen.  Then I saw a huge black circle connected to another medium sized circle.  “Whoa…is that the tumor?  That’s huge.”  I stood wide eyed not realizing my hands had come up to my mouth.  “No….no that’s not the tumor.  That’s the cyst.  This is the tumor.”  He pointed out a small white area that was hooked onto the black hole.  And for a second I relaxed thanking God it was much smaller.  Then my over reactive brain kicked in and I started analyzing just how big that cyst was.  “Um…isn’t that a problem??  That is huge.”  My mind reeled as sweat beads formed on my upper lip.  Calm down Jessica, you have no clue if that’s as bad as you are imagining it to be.  Just stop being so dramatic and listen to the doctor.  “No…well…I’m not really worried about it right now.  If it gets bigger we will take it to Neuro-surgery and see what they say.  Now you can see how much the tumor has shrank in size…”  His voice trailed off as he pulled up a scan from when we first started chemo.  I glanced at the tumor size.  It had shrunk…a ton!!  Wow, that was exciting.  However, I looked in the first scan at the cyst then the last scan.  The cyst was almost non-existent in the first and the size of a quarter in the last.  So in the last 9 months this thing had grown into a huge mass. My mind ran to Zayne’s behavior over the past couple of weeks.  I had commented to my sister that he just didn’t seem to be himself.  His sleeping was off.  And so was his eating.  He has been asking for his bink more and wanting mommy to snuggle often.  Before last week I just blamed it on chemo.  But last week he was awake at 5 am for a couple mornings in a row.  And I couldn’t help but flash back to the very beginning of all of this.  Not just the beginning of chemo, the beginning with the insomnia.  The insomnia that started it all.  The insomnia that led to headaches that led to the tumor.  And I felt despair and fear wrap it’s clammy fingers around my throat.  I tried holding my composure while in front of the doctor, however he looked at me and asked if there were any new behavioral changes.  So I told him aside from waking up to early it was just mom gut that told me he was a little off.  Doctors don’t do very well with mom gut.  I got quiet and already started a plan of action in my head.  Call the Neuro-Opthamologist and get his opinon.  Get a copy of the scan and have it read by a different radiologist.  I slowly heard Brads voice becoming audible again.  “So this is overall good news.  This is where we want this tumor to be.  And some people live with tumors for the rest of their lives.  Conversations for future down the road are going to be if we need to address the size of the cyst and if the tumor starts to grow again.  “And if it grows after 3 months?” I asked knowing the answer but somehow hoping it was different.  “Then we start a different kind of chemo…but we don’t have to talk about that now.  Now we finish this chemo and hope that thing gets smaller.  He’s doing great Jessica.”  Brad smiled.  “I guess that cyst just looks kinda big to me…I mean what if it starts putting pressure on things and he starts having headaches…I don’t want it to get…”  Brad cut me off by saying “That’s not what we need to worry about right now.  Now we worry about the next 2 cycles of chemo.  Ok?”  Not worry…I’m looking at a black hole in my kids brain and you’re telling me not to worry?  God help me.  Why do I fear so much?  I don’t wanna do this anymore.  I can’t.  He is a child.  He needs to live a child’s life with a mom that isn’t going insane.  “Ok…great!  Thankyou!” I faked my out the door and tried my hardest to wait until we got in the car to lose it.  We pulled onto the highway and the tears rolled.  I called my husband to relay the information.  After getting off the phone with him I tried getting a hold of my mind.  The process was not going very smooth.  I called Reba.  Watching her kid come out of a coma and go through rehab after getting shot in the head on a freak hunting accident, I think she can relate to my brain.  I told her of my fears.  All of them.  I told her the biggest one of mine was that I was beginning to lose my mom gut to fear.  And I didn’t want to do that.  I know I am a strong person.  I’ve been through a lot in my life to equip me with strength.  We all have.  Everyone has been through some sort of challenge in their life.  I wanted to know that I was still conquering my fear instead of letting it conquer me.  She had a lot of good things to say to me.  I could feel her compassion coming through the phone.  It didn’t matter that I hadn’t talked to her in weeks.  It didn’t matter that I was sobbing all over the phone.  She was there for me.  She had empathy.  And I think that hit me.  She was feeling my situation but not letting it get to her too much.  She has come through her own trauma.  And I started to realize I can be an empathetic mother.  Protect my children from things, love them, hold them, re-late to them.  However, I didn’t have to be a part of the fixing process.  I could just focus on loving my son. 
Fran texted me that morning realizing I was having a hard time and what she said was so inspiring.
God is greater than our minimal faith and lack
Of understanding.  Zayne is so ABOVE this diagnosis!
And he is.  If Zayne has to have surgery or even be put back on chemo in the future I want him to be able to count on me as a mom that offers loving unconditional support.  Not one that loses her mind because she can’t control whats going on in his life.  I want to show him he can TRUST GOD!!  And if God can handle mom’s words, He can handle Zayne’s too J  I know I don’t have this down yet.  But I do know that I have amazing support.  I have an incredible family and friends.  They allow me to go a little nuts and then help me get back up.  Today was a not so fun day but I am thankful.  I am blessed.  And I am using that small little mustard seed of faith knowing God will take that and honor it.

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