The Agonizing Wait Begins

Danjela went into surgery around 1:30am.  And the agonizing wait began.

I had been posting updates on FB as we went through the night, but already messages of support were starting to come in.  Most of them were shocked responses.  What??  Not Danjela!  Not this healthy, beautiful, 11 year old artist, singer and ballerina.

We were given a few options on where we could wait.  We could wait in her actual PICU room, but we said no right away.  I didn't think I could handle being in there when (or if) they wheeled her back in and I wasn't prepared for what I was seeing....or even if the news was bad.  We could wait in the waiting area outside the PICU on the same floor or we could wait in the waiting room on the surgical floor.  One nurse suggested we wait there in case they needed to find us, so down we went with our Chaplain, who's name was Olive.

At first, I was numb.  Still trying to process what the hell was happening to our family.  We did normal things....plugged in our cell phones, posted an update, got some water, tried to get comfortable.  We knew we were in for a long wait.

I remember having moments of ups and downs.  During the ups, I would be calm....able to have a conversation, just maintaining general conversation.  Olive was very good and skilled at asking questions that would get us talking....keeping our minds off the agony of waiting.

But the downs.....the downs felt like I was descending into the pit of hell.  My mind would go everywhere.  I remember telling Olive about Danjela's upcoming 5th Grade Continuation and how just last week we bought her a beautiful new dress to wear.  I remember falling apart, crying, and saying how terrified I was that we would be burying her in that dress.  My mind went there......this was our reality at the moment.

At one point, I went off into a corner by myself, got on my knees and started praying the rosary.  I had been clutching them in my hands since we were told she had a brain tumor back in the ER.  I just kept saying the Hail Mary and Our Father over and over and over......whispered prayers, begging, fervently repeated over and over.  The act of feeling those beads in between my fingers was calming, hypnotic almost.  It was something tangible that I could control.  I clutched them clutching them so hard that at one point during the night they broke.

I only made it about halfway through before I lost it again......a mother's wailing, tears that just won't stop coming, begging God on my knees not to take Danjela away from me.  I remember feeling Marc's hands on my back and shoulders all through this.  He was suffering too....in his own way.

By this point, at least an hour and a half had gone by and Olive felt that we should have gotten some word.  So she went up to the PICU on our behalf.  While I waited for her to come back, I went into the restroom and caught my reflection in the mirror.  My face was swollen, my eyes puffy and almost closed shut from crying so much.  I can't ever remember crying so hard.

By the time I came out, Olive was coming up to us.  I could see her walking somewhat fast, like she had a purpose, and I could feel my heart fluttering, my stomach dropping and my blood running cold.  She smiled and said that she had news......Danjela was stable!  This was HUGE and such a good sign.  Olive was a little upset for us that we had to wait on that 2nd floor, so she insisted that we go back up to the PICU where we could go in and talk to the nurse directly. 

Stable......she was stable......which meant she was alive.  A small weight was starting to lift from my stomach and I had a glimmer of hope that she would come through this.

When we got up to the PICU, Olive introduced us to Alex, the nurse who was there when they brought Danjela in and she was the nurse that would be receiving updates from the ER.  She would also be our night nurse during our stay in the PICU.  She told us that Danjela was, indeed, stable.  They were able to go in and relieve the pressure with no complications and that they felt that since she was doing so well, they were going to go in and remove the tumor.

Thank You God!  Thank You Jesus!  Thank You Blessed Virgin Mary and all the Saints!  She wasn't out of the woods completely, but there was Hope.

About two hours later, I went in for another update.  The surgery had gone well.  They got most of the tumor and were finishing up the surgery.  After that, they were going to take her for another CT Scan, clean her up, bring her to the PICU and then we could see her.  Alex said it would probably be about another hour and a half.

Four hours......her surgery took four long, agonizing hours.  At the beginning, we didn't know what the outcome would be.  I was fully prepared to have to post a message that Danjela had gone Home to Jesus.  But instead, I was posting that God took care of our baby.  He touched her and used the hands of the surgeons to see her through.  My faith soared.  My Hope was in Him that He would continue to walk with Danjela and us through this journey.  At this point, Danjela was alive.  It didn't matter, at that moment, what the side effects or neurological repercussions would be. 

She....was.....alive.

It Couldn't Get Any Worse

You always hear the phrase, "The darkest hour is just before the dawn".  Truer words never spoken that night.  Danjela's condition was getting worse and we were running out of options.

AirLife.....switching from ground transport to air because time was of the essence.  She was bleeding into her brain, was unresponsive and her left pupil was blown.

They moved her immediately into another room where they prepared her for sedation so they could put in a breathing tube.  She was still breathing on her own, but since her situation was so dire, they wanted to make sure they were ready "just in case" and they didn't have to waste precious time they just didn't have.

The Chaplain sat with us again and explained what was going on while we waited....again... seconds just ticking away. 

Finally, they were ready and we got to go back and see her.  She was sedated and so still and pale.  She had the breathing tube in.  To see your child like that is unimaginable.  To say it's a nightmare doesn't even scratch the surface.

I asked if I could touch her and they said I could.  I held her hand and stroked her forehead....moving little pieces of hair out of her face.  I whispered in her ear that mommy and daddy were right there with her and she had to be strong.  I then whispered to her that she was finally getting that helicopter ride she always wanted to take.....and she moved, every so slightly, but she moved.  Marc went over to talk to her too and then we waited outside in the halls.

Marc, as a Blackhawk crewchief, has worked with Med-Evac in the past and knew some of the AirLife crew.  He would talk me through what was going on, what they were doing....which was very calming, I think, for both of us.  When they rolled her past us, she was all wrapped up tight, like a blue burrito.  She even had the blue surgical cap on as well.  One of the crew came up to me and handed me an AirLife pin, hugged me and said they'd take good care of her.  We'd be following in our car....about 5-10 minutes behind her.

I remember watching her being rolled out and looking around the ER.  It was completely silent and so dark.  Everything stopped and she was the main focus at that point.  I looked on the faces of the staff and saw sympathy and sadness.  They knew that this may not turn out good.  The odds were not in our favor.

As we gathered up our things, I remember just shoving stuff into my purse....still having the sense to make sure we, at least, had our phone chargers....and then we headed out to the car.  As we pulled out, we slowed down just a brief moment to watch them load her in helicopter.  As a mother, I would feel helpless a lot during the next week.....but this was just the beginning.  She was going alone.....I could not be there with her.

As we drove off, I looked up and noticed that there was lightening.....a lot of lightening.  That pit started to form in my stomach again.  Marc kept telling me to keep watching out the window and I'd see them flying.  But as the weather worsened, all I saw was lightening......cloud to ground lightening bolts all around.  While normally this would be such a beautiful sight, this was a bad thing for helicopters.  And then the rain started.....hard, driving, pouring rain and lightening bolts all around.  While Marc kept trying to ease my worries, I've been around aviation enough to know that there was no way in hell they'd be able to fly through this.  I could hear it in his voice.  I kept my hands over my eyes the whole drive.  I just didn't want to see the lightening.

As we got closer to the hospital, I heard Marc say, "They made it" and showed me where to look for the strobe lights on the top of the hospital.  It was a miracle.....God's Hands wrapped around that helicopter, protecting it from the weather and guided it safely there.  I could breathe just for a moment.

Once we got to the hospital, the security guard directed us where to go immediately.  I was so impressed how they already knew we were coming....had wrist bands already for us.  When we got to our floor, there was a chaplain and a nurse waiting for us as well and they took us back to the PICU.

At first, we had to wait as they evaluated her.  I hated sitting there...waiting....not knowing what was going on.  I had no control over the situation.  No way to make them give us answers any faster.  Finally, they called us back and we didn't get to see her right away.  I remember the hallways being dark & dim except for her room which was filled with bright white light.  There were people all around her, moving, doing something....so much activity.

And then a man came over....grabbed our arms and pulled us over to the side.  I remember that he was very short and had dark hair and a beard.  He introduced himself, but to this day, I still can't remember his name.  He handed us a piece of paper and said, "We're out of options.  Your daughter needs emergency surgery and she needs it now.  If we do not relieve the pressure on her brain, she will die."

I remember saying, No, no, no, no over and over again.  My legs collapsed around me and I felt arms hold me up as my worst nightmare, my worst fears were coming true.  Marc had to be the strong one and sign the papers as I don't think I could have even remembered how to hold a pen.

Finally, they took us back to see her and again, I asked if I could touch her.  I looked at my sweet girl.  She looked like she was asleep.  She still had the breathing tube in and she had IVs everywhere.  There were two little sharpie marks -- one in the middle of her forehead and one by her left ear.  I leaned over her....held her hand....kissed her on her cheek and cried as I begged God to please save her, to please be with her.  I prayed for everyone I knew who had passed to be with her.  I prayed for her Guardian Angel to comfort her and help her to not be scared.  I prayed for the surgeons and the team who'd be operating on her.  My last gesture was to make the sign of the cross on her forehead.....and I watched as they rolled her away.

All I could think of was, "Dear God, please don't let that be the last time I see her alive."

And the wait began........

The Next Few Hours

We knew this situation was bad.  There was so much going on that I just didn't have a chance to really process.  I had one very sick daughter on one hand and on the other, I had a very scared daughter who just didn't know what was going on.  While I wanted to collapse in a heap in the corner and just scream and cry....I had to hold it together for her......for both of them.

My dear sweet friend, V, came to the hospital and picked her up.  The plan was to take Nadija back to our house so she could get some sleep.  In the midst of all this, my heart was breaking for my sweet girl because she had a field trip the next morning and I was supposed to chaperone.  I hadn't been able to make any of her field trips during the school year and she was looking forward to me going with her.  V said she'd stay and get her off to school the next morning, if needed.  We kissed and hugged Nadija and told her that Auntie V would be taking care of her for a bit and that I'd be there as soon as I could.

By the time they left, the Chaplain had arrived.  CH Ron was a key part in keeping us as calm as expected.  By that point, I had allowed all the emotions and fear I was holding in to protect Nadija to come out.  I couldn't stop shaking.  I felt cold and hot at the same time.  My mind was trying to process everything that was going on.  I clutched my rosary beads while we were escorted to another room while they prepped Danjela for transport.

All I remember was shock.....pain.....agony.....disbelief.....and guilt.  Oh, how the guilt weighed heavy on me.  How could I have missed this?  Dani almost never gets sick.  Never gets headaches, but over the span of the last 2-3 months, they popped up....not painful and not frequent, but they were there.  Then I felt guilty because I had yelled at her that morning on our way to church.....over something stupid, like the broken handle of a gift bag.  And then I hit the ultimate guilt......I'm being punished.  God gave me this child and I'm a bad mom because I'm hard on her, I yell at her, I expect perfection out of her.  God is going to punish me for that by taking her away from me.  Yes....I went there.

I poured this all out to the Chaplain while twisting my rosary and tattered Kleenex in my hands.  A little pile of shredded tissue was starting to form on the floor at my feet.  CH Ron spoke words to us that I really don't remember much of now.....but one thing that stuck with me....and still makes me smile.  He looked me right in the eye and he said, "I know this is so hard and unimaginable for you and you don't know now why this happening....but it's really ok to look up and say, "Fuck you God!"   He can take it."

At this time, they came back and told us that the ambulance was there and they were getting ready.  I remember saying that I wanted to go to the rest room before getting in the ambulance, so Marc and the Chaplain went ahead into Dani's room.

Five minutes......that's all it took for our world to take yet another drastic downturn.

When I walked towards Dani's room, there was so much activity.  Too much activity for an ambulance transport.  I heard Marc almost yelling at Danjela, "Danjela, this is your father.  I am speaking to you and you need to listen to me right now."  I looked at her and she just looked like she was asleep.  The doctor pulled me and told me what Marc already knew.  The pressure in her brain was increasing....fast.  She was unresponsive, her left pupil was blown, and they feared that she was bleeding in her brain.  Transport by ambulance would take too long.  Time was not on our side.

Our only option at this point was flying her by helicopter.....and they called in Life Flight.

The nightmare continues............

The Nightmare Begins

On Sunday, May 22, 2016, my beautiful, sweet 11-year old daughter, Danjela, was diagnosed with a 7cm brain tumor.

That morning started off normally.  We got up, got ready for church.  Danjela was moving a little slower than normal, but I thought nothing of it.  I asked her to help me wrap a gift for her Youth Pastor & his wife, who are expecting their first baby. 

On our way to church, Danjela said she had a headache.  She had complained of headaches before....every once in awhile and nothing severe.  We'd tell her to drink more water, give her some aspirin and tell her to rest.  Looking back now......all the signs were there.

We got to church and went our separate ways.....Danjela to her Youth class, Nadija to her class, and me to church.  After church, I go to pick her up and passed one of the little girls in the hall.  She asked if I was Dani's mom and told me that she was in the bathroom throwing up.  Her teachers caught up with me and told me the same thing.  I gathered up Dani from the bathroom and asked her how she was feeling.  She said her head still hurt and her tummy was queasy.  She mentioned a little blurry vision.  Marc and I both have migraines, so my mind started to go there.

We got her home and into bed.  I gave her some aspirin and she fell right asleep after vomiting one last time.  She got up around 2pm and said she was hungry and feeling much better.  She ate a donut and played with her sister for a bit.  Around dinner time, she started to look sick again, so we told her to go ahead up to bed.

20 minutes later, the screaming started.

She kept holding the left side of her head saying the pain was so bad.  It would ease for a few minutes and then start up all over again.  A small part of me was still hoping for a migraine, but my momma's heart told me something else was going on.  We bundled her up and went straight to the ER.

When we got there, they immediately took her back.  Her vitals were good, no fever, but she looked so pale and lethargic.  The ER doctor immediately went to meningitis and wanted to do a spinal tap.  While we were open to all methods of treatment, we really wanted to try some pain management first before going that route.

They took blood, which came back normal except for a low potassium count.  They gave her some meds to increase that along with some Tylenol.  Marc and I decided that I would take Nadija home to try to get some sleep.  (This was about 9pm now).  About an hour later, Marc called me to tell me that while the Tylenol worked at first, once it started to wear off, the pain came back.  We were looking at something other than a migraine and he gave his consent for the spinal tap.

At this point, I bundle Nadija back up in the car and head back to the ER, which is only about 15 minutes away.  By the time I got there, Marc told me that the doctor had ordered a CT scan before doing the tap.  About 20 minutes later, the doctor and a nurse walk in and close the door.

I knew something was wrong.....terribly wrong.

They told us that the CT scan revealed a 7 cm mass on her brain.....and it had been there for a long time.  She had immediately called over the Children's Hospital's neurology department and they wanted her immediately.  My legs collapsed from underneath me and I remember them asking if I wanted a chair.  I kept insisting that I was fine and sat down on the couch next to Nadija who looked absolutely terrified.  They called a chaplain for us and began making arrangements to transport my baby by ambulance ASAP.  I called my dear Army Sister to come pick up Nadija to take her home.  The world is spinning and we're making phone calls to family and close friends letting them know the situation.

Our nightmare was just beginning............