Wednesday, November 30, 2011

Day 1 (As told by Ryan)

Today started like any other day. Alarm clock, shower, and coffee. Except today we had to bring our 2-month old daughter to get an ultrasound performed.

I need to back up to yesterday. Ashley took Mallory to the pediatrician for her regularly scheduled two-month checkup. Mallory's pediatrician is an excellent doctor. Dr J. has some of the best bed-side manners amongst any doctor I've seen. He speaks to you exactly as you need to be spoken to. When he describes a procedure, or a test, he uses all the right words to give you all the information you need, without inundating you with all the what-ifs. Being the inquisitive one that I am, I like to ask my doctors more detailed questions. Dr J. has always been willing to bring the conversation to whatever level you ask him to, and I appreciate that about him.

Back to the appointment, Ashley took Mallory in for her normal two-month checkup. Dr J. checked her over, examined everything he needed to examine, felt around on her stomach to feel the internal organs, and everything else he has to do to perform his 107-point safety inspection. During this exam, Dr J. discovered something significant. I appreciate how he delivered the news to Ashley, which was to the effect of "She looks good! I'm going to put in a request for the ultrasound technicians to contact you and look at her abdomen. I just want to get a little better look at her internals, just to make sure she is alright."

We should have suspected something immediately. Truth be told, Ashley was more concerned about the doc's comment more than I was. I wasn't even at the appointment, but Ashley's description of the event didn't raise any alarm bells in my head. We should have suspected something when he told us to go to the hospital for the ultrasound. Why is this odd? Because Dr J's office has an ultrasound machine and a good tech running it. Uh oh.

Back to today, we bundle up Mallory into her car seat, and drive downtown. We didn't have to fuss with Jillian, since she was spending the night at Ashley's parents house.

We arrived at the hospital, and got immediately sat down in the ultrasound exam room. The technician was very polite and cordial, and began her scanning. Not three minutes into the scan, my Uh-Oh-Meter started to peak. The technician's mood changed, and Ashley and I suspected something was up. She was finished her scan, and went to review the pictures with the radiologist. She took some time before she came back into the room, and said she needed some more scans.

She was quite tense during the second screening, making nervous small talk with the baby trying to keep her calm. She focused in on a specific region, and took lots of measurements. I could see lots of scary looking stuff on the screen, but I still had no idea exactly what I was looking at.

She finished up, and excused herself once more. Easily an hour went by before she came back in.

"I have a phone call for you guys, it is your pediatrician, and he has to explain something to you."

Ashley took the phone while I held Mallory in a bundle.

9:00 AM; It was at this point that our nightmare was confirmed; "There are tumors on her adrenal glands."

The rest of the day was a complete whirlwind. We were admitted to the hospital, and we sat around and waited while a dozen or so doctors developed the game plan. She had a CT scan performed around 1:00 PM. In typical form with the rest of the Helen DeVos Children's Hospital, even the CT machine was plastered with cartoon paintings of fish to help calm the patients.

We waited around in our room until around 5:00 PM. Lots of pacing, lots of stressing, lots of praying. In walks our nurse, and she starts introducing a team of doctors as they enter the room. This is when we first met Dr. Kurt, who we soon learned is a St Jude's alum. She walked in carrying an instructional book under her arm. The title of the book was "Childhood Cancer."

I almost died right then. I wanted to die. I wanted to collapse and die right then, so that I wouldn't have to deal with what I was about to be told. The only reason I stood there to take the news was so Ashley had a cornerstone to rely on. I had to be the bulwark. I have to be the skeleton that keeps Mallory and Ashley and Jillian tied together as a supportive family.

The doctor has lots of experience delivering this news, and she rolled it out at the exactly correct tempo. I was impressed how I could be told my kid has cancer, and still didn't feel like I just got steamrolled. She is a consumate professional.

Neuroblastoma is a rare cancer of the sympathetic nervous system, which typically manifests as tumors on the adrenal glands. Don't feel bad if you've never heard of this cancer, because neither did I until it came out of the doctor's mouth.

The road ahead of us is long. I stayed up late all night researching and learning. There are lots of scary things out there, but I wanted to know it all. All the good stuff, all the bad stuff. Emotions are racing, but knowledge is power. If we can prepare for what is coming, and make any useful contribution to the process, I'll invest all I have into it.

We spent most of the night crying and praying. Tomorrow we'll be strong, but tonight we allowed ourselves to be weak.

4 comments:

  1. I can't even began to understand what you guys are going through! but I will pray and make sure everyone around me prays for you! keep you head up and be strong I have faith!!

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  2. I'm so sorry to both you and Ashley. Ryan, I give you so much credit for how strong you are being and taking initiative to learn so much in order to be prepared although it has to be so hard.. Stay strong guys. -Jess Garcia

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  3. I can't imagine your pain, your shock, your devastation. Even though this is treatable and the Dr's are wise, there is still nothing as paralyzing.

    Love you guys. Praying for you. I called and let your mom know that if you need anything with Jilli or meals or anything-- ASK-- PLEASE. Until further notice-- praying intently.

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  4. Hi Ryan, you dont know who I am, I am Katie Garcias Mom, (we are the ones that make all of the bows Ashely has gotten). As I read this, I can honestly say, I had tears fall and as I write this, I still have tears. By no means is this a comparison, but compassion instead. Both of my girls were healthy babies, but my family has dealt with so much cancer, that when I was reading your blog entry, it brought me back to each time I was told of yet another positive cancer diagnosis.
    So I can fully understand where you are coming from. You want to fall down and weep, you want to run and hide, but like you said, you have to be strong and somehow God pulls that strength right out of us and we become a person we dont realize we can be.
    I am praying for a full recovery for Mallory, to grow into a strong little girl.
    Both you and Ashley are strong people, but know, if you need to cry those tears, not a soul will tell you that you are not allowed to, that you have to be strong. You are only human, cry if you need to and then find that strength once again, but never feel guilty for that little bit of weakness.
    If there is anything, no matter what, I am right around the corner from Ashleys Mom, I am willing to do whatever it takes to help out.
    Remember to take care of yourselves as well.

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