The Tiger Woods of Bone Marrow Transplants

Today was d-day and by d I mean the first doctor's appointment. This was the day that we met with the physician who will be managing Nathanael's treatment, otherwise known as the Tiger Woods of bone marrow transplants. I say that because she is considered the world's expert in treating children with Wiskott-Aldrich Syndrome and has performed more transplants on Wiskott kids than anyone else ever.

It's always a little anticlimactic when you meet someone of that level of expertise. She walked into the room and I thought, "So this is her." Truth is she looks like everyone else and honestly I don't really know what it means to be the best there is at treating a certain disease. I've actually seen Tiger Woods up close. I've seen what sets him apart when it comes to driving a golf ball or making a difficult approach shot. I don't know if she has some kind of wicked technique for finessing a match between a donor and a recipient. I think what we'll find is that should complications arise, we'll be grateful that the "clubs" are in her hands.

One thing is for sure, the place exudes confidence. From the nurses to the different doctors we saw, from the chief through to the members of her team, it quickly became clear that we were in the right place. They treated us with respect, answered our questions, and took great care of Nathanael.

Over the next week or so, we'll get the schedule for his pre-transplant testing. They will need to thoroughly check him for infections and some of the tests, like his endoscopy/colonoscopy, will require sedation. He'll get an EKG and an MRI and lots and lots of blood draws. Once they give the green light, the preparatory regimen of chemotherapy will begin most likely in early November with a transplant goal of mid-November.

Many folks have asked something akin to, "So you've found a donor?" They way they describe it, Nathanael is fortunate in that we have many donors. It's more a matter of choosing one than finding one. We were told today that one potential donor had completed their screening lab tests and if the doctors want to use that person, we are good to go. I don't know what will make them want to choose one over another but they do.

So now we wait to get a schedule for his tests. We can't really go to public places because we need to minimize the risk to Jamison getting sick but I think we can go for some drives and anyone who is around here, if you haven't been sick or around someone who's sick, and don't mind using hand sanitizer when you walk in the door, come on over for a visit.

Once again, you can contact us by email, cell or Facebook.

Door to Door

Good evening from Cincinnati, Ohio. We made it and are beginning to get settled into our new digs. What we are going through as a family can best be described as surreal.

I can't emphasize enough how much we are floating on the wings of the generosity of others, and as you can see by the picture here, I mean that quite literally.

At 9:30 in the morning on Monday, the 28th, we left our house in McKinney, Texas, and drove, oh, about 15 minutes to the Collin County Regional Airport. I've never been to a local, municipal, airport so I didn't really know what to expect. I was surprised when the woman behind the counter told me that if we wanted, the person who picked us up in his truck could just drive through the gate and after the plane landed, I was even more surprised when we were told the truck could just drive up to the aircraft to best facilitate the transfer of luggage.

Let me try to explain what flying is like to me. From my vantage point, walking into an airport is like walking into an alternate reality. I have a friend who flew from China to the U.S. where they went through customs in Los Angeles but changed planes in Honolulu. Since they weren't going through customs, they had to sit in a room for several hours and weren't allowed to leave because they hadn't officially entered the United States. I asked him if he felt like he'd been to Hawaii. He said no way. It's as if entering an airport is an other-worldly experience. You aren't here or there. You're in this metaphysical waystation awaiting the chance to re-enter reality by walking out the door and getting into a car.

Believe it or not, that's a comfort to me because it allows me to hold on to this illusion that planes fly by other-worldly means like magic and wizardry. Driving up to the plane in McKinney robbed me of that illusion. Pilots aren't wizards. These were just a couple of guys who climbed out of the aircraft like you and I would get out of a car. Getting into the plane felt like getting into a car except that it left the ground in one big hurry.

In my conversations with the pilot leading up to the flight, I told him I was what he called a "white knuckle flier." Because of that he took the time to warn me that the climb would be a little bumpy. In reality it wasn't bad at all. There was only one drop that made me grateful I hadn't eaten much that morning. The descent was another story.

Ask anyone who knows anything about flying and they'll tell you that turbulence isn't a big deal. This pilot told me the same thing. The plane can handle more than your body can handle. If you encountered turbulence strong enough to do damage to the aircraft, you wouldn't be conscious to experience it. I don't know why I can't get my brain to buy that. I guess I have this picture in my mind of turbulence causing the plane to tip over upside down or something. Well, after seeing pilots deal with turbulence on Monday far more intense than anything I've experienced on a commercial airline, I think I'm just about over that fear. These guys weren't even holding on to the controls. They were finishing their lunch!

Anyway, here we are, safe and sound in Cincinnati having experienced very little stress considering all the change that's happened. That's because of what I mentioned above; we are resting in the arms of the generosity of a great number of people. There were those who helped us get to the airport and load the plane and see us off with an encouraging word and a hug. There was the guy who drove our van from McKinney to Cincinnati in one day so that we could drive it away from the airplane after we landed. Then there were those who made it possible for us to walk into our temporary home and find food in the fridge and the cupboards. Our two year old had a toddler bed made for him with this adorable stuff alligator lying on it. A wooden train set was waiting for him in the living room. It could have been a whirlwind but instead it was simply a little breezy.

When I studied the book of Ruth, what struck me was how God demonstrated His compassion through the chesed, or lovingkindness, of others. Naomi knew God was with her because He showed her his love through Ruth. He made it clear He'd take care of her through Boaz. Thousands of years later, we are experiencing God's grace made similarly tangible. He's showing us how much He loves us and how much He's taking care of us through the generosity of friends, new and old, family, and a couple of pilots who had compassion on the big kid who had a harder time flying than the two little ones.

Please pray for us tomorrow. The initial appointment is at 9:00 AM Eastern time.

God bless.

Brad

Bruises and Blessings

We are now three days and counting until we willingly begin one of the scariest and craziest seasons of our lives. When I look at the piles of boxes and clothes and towels scattered throughout our living room contemplating being apart from my wife for five months, I find myself wondering why we are doing this. It's like standing at the top of one of those rides at Six Flags or Kings Island and regretting the fact that you ever got in line in the first place.

A little over a week ago, I was reminded why. There's this great swing that some amazing friends let us borrow that's sitting in our kitchen. Nathanael enjoys sitting in it but, as is the case with newborns, only enjoys it for so long. This was one of those moments. Bree thus went to pick him up not realizing that he wasn't strapped in due to the actions of our two and a half year old. Since he wasn't strapped in, he'd slid down further into the swing than was normal and as she lifted him out, he bumped his right thigh just above the knee. What came out was a brief, "I'm in pain," cry that subsided almost as quickly as it began. That's the great thing about little kids. When it's over with, it's over and done.

Later that night, when we were changing one of his diapers, the lights were off in our bedroom because he was just about ready for bed. I was using my cell phone while Bree did the change to provide some light and I decided to just take a quick look at where he had bumped his leg. The bruise was the size of a half dollar and it was red and purple. Trauma equivalent to the flick of your finger against your leg caused a bruise of that magnitude.

It's moments like these that remind us that no matter how great Nathanael looks on the outside, all is not well. If he throws his head around and hits my chin with his forehead, it could cause a brain bleed. This morning he smiled at me and it was an honest to goodness smile. He wasn't passing gas. He was happy but that doesn't change what's going on inside. No amount of smiles will change the fact that our little boy is sick. He's broken at the very level of his DNA. That's why we are doing this.

I wish I could find a superlative to describe how good God has been. An airplane, that quite frankly terrifies me, is going to pick us up on Monday 10 minutes from our home in McKinney, Texas, and then drop us off 10 minutes from our apartment in Cincinnati. The pilot of the plane just happens to have a grand nephew who adopted a boy from Guatemala who had the same disease Nathanael has. Considering there are about 4 cases of Wiskott a year, that makes my head spin. Friends from my high school and college years have rallied around us as if we've never been apart even though we haven't seen each other, in some cases, in 10 years or longer. Not to mention the help that's coming from people we've either met once or never before.

When I was 20 year old junior in college volunteer Young Life leader, I sat in the stands watching a JV soccer game. The guys I met then who were juniors in high school are now reaching out to lengths that are stunning and humbling.

All of this causes some thoughts to ruminate. I'm a pastor, so I can't help make a few points. One, you will never regret giving your life away. Two, you have no idea the ways in which God will use the giving away of your life in the future. Three, all of us, every single person ever born is born with broken DNA that's in need of repair. Even though we may rarely look like it, we are all sick and all in need of a transplant. It's Christ that takes away the old and gives back the new. Pay attention to the symptoms and find the help that's more readily available than you could ever imagine.

See you in Cincinnati.

P.S. Best way to contact us is by cell, email, or Facebook.

IVIG

On Monday, we experienced Nathanael's first IVIG infusion. Just in case you've never heard of it, IVIG stands for IntraVenous Immune Globulin. Several aspects of that make me uncomfortable, of which the name is only one. Anything called "globulin" just sounds nasty, like trolls and elves live within it. It's also considered a "blood product," which sounds awkwardly futuristic and reminds me of the movie The Island.

Anyway, IVIG is essentially donated antibodies from roughly 1,000 people that are then given to those who suffer from immune deficiency diseases, like Nathanael's WAS, as well as autoimmune disorders like MS. Perhaps you've heard of people going and donating plasma. I've heard of it but I never knew what the point was nor did I understand how it was different from donating blood. Now I know. When people donate plasma, it's used to make IVIG. For 21 days, the shelf life of IVIG, Nathanael has antibodies to fight against illnesses that his body is unable to make for itself. If, for some reason, a bone marrow transplant wasn't an option for Nathanael, he'd be on IVIG treatments for the rest of his life.

We went to the "special procedures" clinic inside Children's Hospital in Dallas. The waiting area was a little scary as it resembled an ER waiting room for kids but they shuffled us off into a room rather quickly. Once inside a space roughly the size of a sitting room or a study, with its own sliding glass door nonetheless, a doctor brought in a machine called a "VeinViewer". In all honesty, this was cool. It shined a green light on Nathanael's hand that basically created a map of his veins and showed them where to put the IV line. We each stuck our hands under the light and let the record show, I've got wicked veins.

In retrospect, the stick was the most nerve wracking experience of the entire day. Nathanael's veins aren't great. I don't know if that's the case for newborns or just him. Thankfully, our immunologist had the "IV Team" come and start the line. They are used to dealing with difficult insertions and were able to get it on the first try. Secondly, there was very little bleeding from the stick which isn't a small concern with a child suffering from thrombocytopenia (low platelets).

Otherwise, it was a rather relaxed 3 hours. That's how long it takes to infused it into his system. From what they told us, the time taken is meant to mitigate against any possible side effects from the infusion and from the looks of things, there were none. Once the infusion began, Bree held Nathanael and we talked, read magazines, and I played with my cell phone a little. Bree was also able to make a dent into our thank-you note pile. We don't know how many of these infusions he'll need before his transplant or if he'll need any once it's been completed.

One thing we are quickly coming to grips with is just how expensive this is all going to be. The blood test on me, Bree, and Jamison to see if we were matches for Nathanael was $5,800. $5,800 for three blood tests and a 20 minute visit from two doctors and two nurses. Never in my life do I remember hitting our "max out of pocket" on our insurance, even when Bree had to have chemotherapy. It took 4 weeks to accomplish that feat once Nathanael was born. I was told that the total cost for a bone marrow transplant is in the range of $500,000.

I feel fortunate and humbled that we have the health insurance that we do. Our policy has no lifetime maximum benefit. In my conversations with the finance people at the hospital, I was told horror stories of people having maximum benefits and losing their homes. I have to admit that I feel a little guilty but at the same time grateful. We have some sizable bills to be sure but for those with eyes to see, there are already a myriad of blessings to be found in the midst of a situation I wouldn't wish on anyone.

Our plans for Cincinnati are coming together. We have secured an apartment in the Oakley neighborhood. That's about ten minutes from the hospital. We're still working on transportation but at least we have a place to live. The initial appointment is on the 30th, two weeks from today.

The Beginning of the Road

Today, I (Brad) am sitting at my desk in my office in McKinney, Texas, having an idea of what the next steps are but having no idea how far this road will take us.

On Wednesday, August 19th, at 3:18 in the morning, our second son, Nathanael Zachary Banks was born. His length and weight were fantastic, 8lbs 70z and 20 inches long. Roughly an hour and a half later, we were in our recovery room and as I was holding Nathanael in my arms, a group of three nurses walked in and one told us that his platelets were low and that they needed to remove him to an isolation room for further observation. It was at this point that we knew the answer to a difficult question.

My wife Bree is a carrier for a disease called Wiskott-Aldrich Syndrome or WAS. It's a genetic disease that affects 1 per 250,000 live male births per year which categorizes it as a rare condition. I can remember the conversation Bree and I had on the couch in my fraternity house in college where she told me there was a 50/50 chance she'd be a carrier. I can remember when we got her test results that meant that, if we were to have children, each girl would have a 50/50 chance of being a carrier and each boy would have a 50/50 chance of having a disease where his white blood cells can't fight off infection and his platelets were too low and immature to curb any significant bleeding, not to mention a dramatically increased risk for leukemia and lymphoma as he grew older. The statistics held true. We have two boys. The first one didn't get the gene but the second one did.

The only cure for Wiskott-Aldrich Syndrome is a bone marrow transplant. In a few weeks, we will be traveling to Cincinnati so that Nathanael can be treated at Cincinnati Children's Hospital. Why Cincinnati? One reason is our health insurance. More of the treatment will be covered if we go there for transplant but the second reason is expertise. More Wiskott babies have been successfully transplanted there than anywhere else in the world.

I love Cincinnati. It's where I grew up. It's where I graduated from high school. It's where I practically went to college and thus, it's where I met my wife. Most importantly, it's where I met Jesus. Whenever I have the chance to visit, which isn't very often, my heart sings. I love the Queen City but I hate the reason for going. My beautiful infant son will have to endure a hell whose redemption is found in the chance at having a normal life and the blessing of never having to remember a single minute of any of it.

This blog is Bree and mine's attempt to share with you, our family and friends, what's happening and also to help us process how God is working in us, for us, and, we pray, using us and this situation to bring about His glory. He is sovereign and we are doing our best to trust Him today.

Sometimes the postings will come from Brad. Sometimes they'll come from Bree. We'll let you know what's going on and how you can pray. What a great day it is that stuff like blogs, Facebook, Twitter, and email can be so easily used to connect with so many. To God be the glory.

In Christ
Brad