Wednesday, November 30, 2011

Day 1 (As told by Ashley)

Here I sit in this stupid hospital room only 12 hours after we recieve the news that our beautiful 2 month old has neuroblastoma cancer. I feel like I can't breathe, I am numb and angry. Why Our Baby, Why? What did she do to deserve this? She is a BABY! Words cannot describe how much pain I feel inside. She is my baby, we planned her, I baked her, I gave birth to her, she is such a perfect round roly poly girl. And somehow life gave her cancer? Somehow through it all she still smiles, she even passed a few giggles today at us. I am trying to keep my faith that everything happens for a reasonm that god wouldnt give us more than we could handle but I can't help but feel so PISSED at God right now.

We have a few tests today that will give us a better indication of what we are dealing with. What our baby will be fighting.

I can't help but feel sorry for my oldest daughter as well, we are a cancer family now. Our lives will revolve around hospital stays, blood counts, tests, surgerys, and more things that I am sure we havent even prepared ourselves for yet. Jillian is almost 2, this is a time were we are supposed to be shaking our tushies to music, baking cookies, getting ready for christmas and her birthday and those things are put on hold for awhile.

I could barely get out of the house with the 2 of them on my own before this and now I have to juggle doctors apts, hospital stays, being a Mom of a busy toddler and a baby that is very sick. I am overwhelmed by this, and I know we have so much love and support and yet we feel so alone. We are going to have to learn to lean on everyone for help, and for me that is sooo hard. I am a stubborn stubborn woman. But both of our girls need me to be strong, to give them hope, to wipe there tears and kiss there boo boo's.

I have no idea what we're going to do. But we are a family and we are going to fight this together.

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.