Friday, November 29, 2013


Some recent pics:

Wrapped in toilet paper during kindergarten Halloween party
Holding Josiah, new baby brother
Getting ready for school!
Filling Josiah in on the details of how to get what you want from Dad.

Teaching Josiah the pledge of allegiance.

Trying to will Michigan to a miracle win.

With Thanksgiving being so late, family in town, birthday parties, Black Friday, we are almost upon a very important day in our family's life.

We are coming up close to D-Day, or diagnosis day on Dec. 1. It's one of those seminal moments in life, right up there with wedding anniversaries, birthdays, day of salvation, etc. Remember with us that month of Dec with all the shock, fear, sadness, hope.

Neither Jeannie nor I will ever forget the details of that day. It was a Saturday, with unseasonably mild weather. I remember picking up Chick-fil-a for breakfast for the girls that morning. Soph had been sick for the past few weeks, but still had her appetite, and I thought that feeding her CFA and forcing her to rest would help her finally kick this flu. I wasn't too worried though, b/c Jeannie had taken Soph to the pediatrician, who examined her, even took labs, and everything came back fine. Watching Monsters Inside Me had raised my level of paranoia that she might have some sort of exotic bug, but with the blood work, my fears were temporarily eased. I also remember taking advantage of the weather to put up Christmas lights that Soph had been requesting for a few weeks.

Jeannie had previously made plans to go out with some girlfriends for dinner, so I remember playing with the girls, and getting ready to take them up for bath and bed early, since Soph was still sick. But I distinctly remember looking at her lying on the rug, miserable, and something just wasn't right. I texted Jeannie and asked her to come home, b/c I thought we should take her to the ER for more tests, or something. Something just wasn't right with Soph. She came back and took Soph to the ER, while I put Seah down for the night. After a few hours, the texts from Jeannie seemed a bit more serious, and I against my best judgment, left Seah sleeping, and went to CDH. After waiting 15 mins, the nurse came in with the look. You know, the look that makes you think that they have the wrong room, the white, ashen face, about to deliver the worst news anyone could imagine, that look. On the CT scan was a 5cm tumor in the back of her brain.

Off set a whirlwind of disbelief, as Jeannie & Soph were whisked away in an ambulance downtown, while I went home to wait for my mother-in-law to come house-sit. I won't forget that long drive alone downtown at 12:30am on Sat night, wondering what would happen to my lovely daughter. After more grave looks from the Lurie ER, and neurosurgeon resident on-call, it was determined that Soph would emergency surgery first thing on Sunday morning at 9am. You can read more about the rest of that first week in the archives, where neither Jeannie nor I got any sleep for 3 days. I lost about 5 lbs in that first week b/c I could not keep any food in or down, nor could I sleep. It was the worst period of our lives. 18 days in the hospital, not knowing what to expect or what the next day would bring.

As I think back, what a long, difficult, tiring, hopeful road it's been, this past year. From the 6 weeks of double-edged radiation treatments in Jan-Feb, to the 7 cycles (so far) of chemo starting in Mar, the weekly clinic visits, to the fever-caused unplanned visits, to the new world of home health and port care, to the non-eating and TPN, we have been thru a lot. It's sort of culminating now with Josiah's arrival, and seeing/nearing the last 2 cycles. It's almost surreal. I can't even imagine Soph with any hair. Looking back, she seems like such a different girl. But she's still the same feisty, smiley, sharp, beautiful daughter that I adore, just a bit more battle-tested.

As we reflect back on the past year, we could not have made it without all of you who read this. You have given us money, gift cards, food, listening ears, hugs, "likes", comments, messages, emails, texts, cards, calls, prayers. All have encouraged us, strengthened us, and carried us through the darkest days. You have no idea. Thank you.

The road is not yet over. We still have 2 more cycles to go (one this upcoming week, then Jan 14-15, the dreaded 'B' cycle), plus all of the clinic visits, fever trips in between. She'll have to be weaned off TPN, and the port will most likely stay in until the May 2014 MRI.

But we have hope. God has brought us this far, and we are cautiously hopeful for the days to come. Have mercy on us, Lord, and see us through the end of this season of life.