Tuesday, April 22, 2008

The begining...

Today, 4 years ago, we found Hadley's tumor. We have been fighting this beast for 4 whole years. Long enough that none of our kids remember a time when it wasn't a part of Hadley's and our lives. Please pray for our girl...her brain, her tired body...and my mommy heart. I feel like I've been repeating myself for 4 years. Please pray for Hadley's brain and my heart. Maybe we should head for Oz...seek out new parts. (that's my sick sense of humor--I'm trying hard to laugh)

4 years ago today Hadley was 3 1/2, Keegan was 2 and Liam was 5 months old. We thought Hadley was autistic. We had noticed she'd quit using the left side of her body. We tried to trick her into using it. No luck. In the year and a half prior we had been denied MRI's by several doctors. They didn't want to use anesthesia if they didn't have to. They said she was fine. It's common for autistic kids to have sleep disturbance, seizures and developmental delay. They ignored the failed mini neurological exams. They failed her. Today, 4 years ago...Hadley would finally get that MRI doctors in two states, several offices and even one of the best peds hospitals in the country had denied her. Today, 4 years ago our world would be turned inside out and upside down.
Our morning started at our pediatrician's office. We had called the evening before and they had squeezed us in for an 'urgent' appointment. Our beloved ped took one look at Hadley and knew. She had done an internship at Luccile Packard Hem/Onc (Stanford's Children's Hosp.). She performed an exam though...Hadley failed a Babinsky reflex test...could hardly walk now...and her face was noticeably drooping. Our ped sent Hadley and I home with strict instructions to not let her eat or drink anything. She called the children's hospital in Oakland to see if they could get her in for imaging. She had told us there was "something neurological going on". Duh, she's autistic. We had barely walked in the door when our ped called and told me to go straight to the ER. Brandon met me there. We didn't even know to be terrified. We passed time by taking pictures of Hadley picking her nose and showing them to her. =) We finally got the CT scan done. Brandon and I had to wait in the hall. The techs got to work. I stood and stared at Disney movie posters. A young tech that had previously reminded me of a High School boy came out looking like he'd just lost a beloved family pet. I panicked...but didn't know why. He returned with a doctor. They were in a hurry and didn't say a word to us. When they came out to tell us we could take her back to the ER there was no joking, no smiles, nothing. It was silent. I was really uncomfortable and scared. We waited and waited and waited back in the ER. Our appts had started at 9 am...it was now around 6pm and we still knew nothing. Finally the ER attending and the resident who had been treating Hadley came in and closed the door. My heart skipped a beat...then the attending said "As you know we did the CT scan to rule out a brain tumor." We let them know that we had not been told that. They just kept on talking...almost over the top of us...like they had rehearsed this and couldn't get off track. The following sentence changed our lives forever. "Unfortunately, we weren't able to do that. Your daughter has a massive brain tumor." What? What? What? I didn't dare ask them to repeat this...I couldn't hear it twice. They kept talking Brandon freaked out. Hadley was still asleep from the anesthesia. They talked about complications and said they were ready for her in ICU. Brandon had calmed down. I took this as my cue to lose it. I screamed. I swore. I told them it wasn't possible. I yelled at them that she had autism not a brain tumor. I dropped the F bomb several times. I cried and cried and yelled. They told us they'd give us a few minutes and would bring a phone for us...that we should call and have our families come right away. We explained that they were out of state...and they told us they needed to get on planes and get here. ICU, traveling family, brain tumor...I cried some more. I was totally panicked. We made the calls...and got carted off to the ICU.

The first night was hard...I stayed at the hospital and Brandon went home to stay with the boys. I hadn't breastfed Liam since that morning and was in a lot of pain. Gina came, she had been 'here'...literally...in THIS ICU room...waiting on the same neurosurgeon, with the same IV steroids pumping into her daughter's body to reduce swelling. She brought snacks and hugs and a worried face. I had shut down my emotions. I couldn't survive if I let myself feel any of this. Hadley pulled an IV in the middle of the night. It was awful...but, nothing compared to what was to come. The following days are a blur. I have no idea when my mom and John or Brandon's mom got there. I have no idea what any of the doctors said. The first thing I remember after that is sitting in our Neurosurgeon's office while he explained the surgery and his expectations of it.

This is the beginning of the end of our 'old' world, our 'old' normal, our 'old' hopes and dreams and our 'old' sweet girl...


Amber said...

Oh, God, Angela. You guys have been in my prayers for the last 3 and a half years, when I first heard of Hadley. I never heard the whole story - not like this.

I don't have words, as usual, to express what I'd like to say. Just big, big hugs.

...and, as always,
Peace & Results

Sue said...

Your struggles and your heartache is in my heart and prayers. I am glad that you can write about them because in so many respects it is a way of expressing and letting go. You and Brandon have a special little girl and God has intrusted her to you because he knew you would be the perfect parents for her. Hang in there.

Kathy said...

I am sitting here reading your posts from this week and my heart is breaking for Hadley and all of you.
We must keep fighting, hoping an praying for a cure.