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............