If you're wondering where we've been, I apologize for not posting with greater frequency. 15 days without a blog update is poor blog etiquette I'm sure. What you have to understand is that we don't function on Eastern Standard Time so much as we do Jamison Standard Time. From the moment he wakes up at 6:30 in the morning, or earlier, it's pretty much go time until 8:00 at night. Factor in the one hour break we get for a nap and there isn't a whole lot of mental energy left over for the construction of complete sentences.
I've been trying to think of a way to describe our lives here in Cincinnati for the past month. We had the doctor's appointment on the 30th of September but after that was a whole lot of nothing. What comes to mind is this time I was stranded in Scranton. Any aficionado of The Office knows of where I speak. Scranton is in northeast Pennsylvania where they can get quite a bit of snow if the weather patterns are right. Anyway, I was away for something close to a week for training at a Young Life camp in southern New York. I got in the car with several friends for a ride to the Wilkes-Barre/Scranton International Airport (I have no idea why it gets to call itself an international airport...did I miss the non-stop from Scranton to London?). My friends caught their flight and mine was canceled leaving me with two options. I could stay at the airport or get a room at the Holiday Inn. I'm glad I chose the latter because it was a full three days before the airport opened up again.
Now when you think of a hotel near an airport, you usually picture amenities, or at least amenities at the hotel. This was a Holiday Inn Express and the only other building within walking distance was a Damon's. If you've never heard of it, it's a sports bar with good ribs. For three days, I read books, slept, watched TV, and ate my meals (six total) at Damon's. I bundled up and walked across the parking for every lunch and dinner. I'm not kidding, it got to the point where the host looked at me when I came into the restaurant and said, "Your usual?"
That's what it's been like and not because we are living anywhere remote. Quite the contrary, there's a bustling shopping center with not one but two grocery stores just across the street. A wonderful playground with slides and swings, again, resides within walking distance but we can't go there. One of the world's greatest zoo's is literally less than half an hour from us but the risk of picking up some sort of illness is too great.
So, we went to a park where there weren't things on which to climb, essentially, so that Jamison wouldn't ask and we wouldn't have to say no. We went at a time when we hoped the crowds would be small and we ran around and climbed steps. We've also been to a cemetery. You might say that's morbid but it's a place where there's room to run outside in the sunshine. We saw maybe one other person and a cemetery isn't exactly a place where folks are eager for conversation at least with strangers. Plus, we could pay our respects to my step-father.
Let us not forget the parking garage. Desperation breeds creativity. Our apartment complex has a parking garage with a roof level. Up there you can run around, be in the sun, and avoid any aforementioned human beings. You can even, as Jamison often says, "be loud."
One particularly bright spot/blessing from God is that a friend has enabled us to attend church two weeks in a row. If you're wondering how we've managed such a herculean feat, a buddy with whom I attended high school helps to lead worship at a large church that's mere minutes from our apartment. On Saturdays, the worship team and the pastor practice a full run through of their weekend service. My friend worked it out so that we can sit in their cry room and attend the rehearsal, the only four attendees in a room that seats about 4,000. We are truly living the surreal life.
I don't want to make it sound like this is simply a "skin of your teeth," effort to survive. We are eating just fine and I'm getting to spend more time with my family than I ever have before especially with my soon to be two month old whom I soon won't see again in person until he's 8 months old.
This has been a calm before the storm so to speak or rather a calm between the storm of moving here and Nathanael's treatment which is set to begin tomorrow. On Monday, our baby will receive a PICC line which is a semi-permanent IV. He will need multiple blood draws over the next three weeks and won't need to be stuck with a needle again once it's inserted. The week of the 19th is when his pre-transplant tests begin in earnest. He'll be having a CT scan, an echo, and an EKG. On November 9th, he's admitted to the bone marrow transplant unit. On the 10th, he receives his central line, which is a surgical procedure. On the 11th, the chemotherapy starts and on the 23rd, Lord willing, he receives his transplant. Then the long, long road of recovery begins.
Speaking of transplant, as of right now, Nathanael will be receiving a cord blood/stem cell transplant as opposed to receiving marrow from a live donor. When babies are born, some parents choose to have the blood contained in the umbilical cord stored in a special bank for just this kind of use. Should you be someone who's having a child in the future, give it some thought, because it's going to be a life saver for our little boy. I say as of right now because it has to do with his being CMV/EBV negative. That means he shows no signs of Cytomegalovirus or Epstein-Barr virus. The live donors who match Nathanael have antibodies for each and the doctor views that as an unnecessary complication. Also, the units of cord blood that are a perfect match for him, are unusually large. Our doctor prefers live donors when possible but views this as an ideal situation for using cord blood. As she put it, "We don't often find a perfect match with cord blood and Nathanael has two." In addition, the risk for graft versus host disease, pretty much the worst complication that can happen, is lower when using cord blood. It isn't significantly lower but you play every card in the deck.
So this is where we are. If you think to pray, tomorrow is a big day and so is Wednesday and Friday of next week. If you are a prayer planner, the 11th through the 21st of November will be a difficult stretch since the chemo is rather intense. It needs to be to kill off enough of his existing bone marrow to make room for the transplant. Have a happy Sunday and go Bengals.
P.S. If you're wondering, "Where's Bree," who do you think is holding the camera? :)