Missing My Boys (by Bree)

I miss my boys. Well, the two of them who have gone back to Texas, anyway. It's strange for me to think that when I put my phone on the table it'll still be there hours later instead of having found its way into the hands of my curious little boy. I found a bib on the CD player yesterday, and it made me sad to move it, as I realized that I will no longer have that reminder of my favorite two-year-old right in front of me. No more plastic dishes in the bathroom, wind-up fish in the living room, TV remotes (or "renotes", as they're known in our house) in between couch cushions or stuffed toys strapped into the baby swing. All these signs of life with a toddler are no longer part of my daily experience, and it makes me sad.

We can talk on the phone and on Skype, but to be honest, it hurts a little bit to know that your son is more interested in touching the buttons on the computer than seeing his mother who misses him. It's not that I expect Jamison to understand how much I miss him, or that I love to see him...and I'm not sure it would be easier if I thought he understood more. I guess he told Brad last night after we talked on Skype, "I miss Mommy." Heart-breaking. I am very thankful to be able to see him every day. Tonight I heard him laugh. So sweet!

Now for some good news: Nathanael is sleeping really well. In fact, last night he slept from 9:00pm to 7:00am! He still prefers to nap while being held, but will fall asleep in his bed for short naptimes during the day. And who really minds holding a sleeping baby? Even though he weighs almost 16 lbs (!) and gives my arms a real workout it can be tough to put him down. Yesterday I held him for several hours straight while he napped. Precious!

As difficult as this time is I am encouraged that God is using this situation for His glory, as He continues to provide for our needs through the kindness and generosity of the people around us. We continue to have yummy meals provided for us two to three times a week, rides to the hospital with new friends, and offers of help from all directions. I am trying to find ways to communicate gratitude, but too often it takes me such a long time to do it. Maybe if I set reasonable goals for each day I can get caught up.

Just to make you smile, I'm including a few pictures and short video of my "little squeaker." Have I mentioned that he makes lots of squeaky noises? Really cute!

It's easy but don't screw it up!

On Monday we took another step in the direction of real. Believe it or not, there is the tendency from time to time to lapse into thinking that all we're doing here is filming some bizarre reality show. It's a great premise: take a happily married couple and confine them to a small space with their two small children and then don't let them leave. Have them all sleep in the same bedroom. Watch the two year old morph into a three year old before your very eyes. Trust me. It's fabulous television.

But that isn't why we're here and Monday was an abrupt reminder. Nathanael received his PICC line. PICC stands for Peripherally Inserted Central Catheter. It's a permanent IV of sorts. In Nathanael's case, the line was inserted into his right arm. It's 18 centimeters long and all but three follow a line up his right arm into his superior vena cava, a vein that leads into a the right atrium of the heart. The remaining three are outside his arm so that blood can be drawn without having to stick him with a needle again and again. That's wonderful. That's exactly what you want to hear as a parent. We're going to make it so that your child feels less pain but here's the kicker...mom and dad...you have to flush it twice a day. Wait...what?

Apparently, there's a chance it could get clogged with blood so all you have to do to prevent that is inject three cc's of Heparin (a blood thinner) into a port attached to the end of the PICC line. Oh, but make sure it's properly disinfected before attaching the syringe or he could get an infection, and oh yeah, he doesn't really have the ability to fight off an infection. Don't worry, we'll teach you everything you need to know.

They do their best. Of that I do not doubt. A very nice woman sat down with us and went through everything and even gave us the chance to practice the procedure, how to sterilize, what order, etc., on a plastic tray that doesn't quite move like a two month old baby and then they send you home and expect you to do it.

Enter the drama. Take two people already under a good deal of stress and then have them work together to accomplish a procedure where if they get it wrong, the consequences could be bad...for their baby. If the stakes weren't so high, it would be simply comical. "Did you touch it? I didn't touch it. You're making me nervous. Stop being so critical. I'm not being critical. I'm just stating facts. You're doing it wrong. Then you do it!" Truth be told the whole thing isn't that hard. After a couple of times you get the hang of it but then comes the anxiety associated with complacency. What if we get so comfortable with it that we don't pay attention to everything we're supposed to do? Oy.

Wednesday was his CT scan and tomorrow is his EKG and echo-cardiogram. They also draw enough blood to make an afternoon cocktail three days a week. Lord willing the tests will show what the doctors want to see and we can move towards the transplant. As crazy as this sounds, the way the flu is spreading, I'd admit him tomorrow if I could. There's actually an armed officer from the Cincinnati Police Department stationed at each elevator bay to make sure you have a valid reason to go upstairs. It's not because Children's is in a rough area. It's because of the flu. I heard it with my own ears. The germ fortress that is the Bone Marrow Transplant Unit is starting to look pretty good right now.

Give credit where credit is due. Bree did 9 hours at the hospital with Nathanael, solo.

Tell me this kid isn't going to be off to college tomorrow. Can we please slow time down just a little?

Here We Go

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? :)

Our Growing Boy...

So, you've probably been wondering, "Why hasn't Bree posted anything yet?" I don't have a really good answer, as it's not like I've been cooking (we arrived to a kitchen full of food, and had a wonderful home-cooked meal delivered on Thursday), cleaning (our friends also cleaned the apartment before we arrived), doing dishes (our friend who kept Jamison on Wednesday did our dishes while we were gone) or going anywhere...I've just been hanging out with my boys. I have been a little overwhelmed by all the change, and have been holding Nathanael quite a few hours a day, so it's not often that I have two hands available to type. (Right now he's asleep in the front carrier on my chest - so cute!) I could use prayer for a good attitude right now, as it's hard to not be discouraged by our self-imposed "lockdown" or "house arrest", but after our conversation with the doctor on Wednesday we still think it's best to continue the precautions we started 6 weeks ago, so that means I just won't get out much. We did go to Ault Park yesterday, where we walked around - staying away from people and children's play areas - and got some fresh air while enjoying the view. It was so good for me to get out!

As for the boys, Jamison misses "Mommy, Daddy, 'inin house in Texas", along with some of his toys that I failed to pack. (Who would have thought that he'd miss a plastic frying pan so much?!) He also wants to play on his swing set outside, and he continues to talk about "big kids' Sunday School class" and is eager to attend. I have started to talk to him about how he'll go home with Daddy and Nana Joyce, but that Mommy and Nathanael will stay in Ohio to see the doctors. To help him understand, I've told him that Nathanael has an "owie" inside, that we can't see, but that the doctors can help fix. He asked me yesterday, "Tape it?" I tried not to laugh, as he does think that tape fixes everything. It's going to be easier for me to only care for Nathanael without chasing Jamison around over the next several months, but at the same time it's going to break my heart, as he is such a sweet little boy.

Nathanael, on the other hand, doesn't know that anything has changed, though I think something is going on with him - he spits up more often and is more fussy than he was a few weeks ago (though I suppose it could be my own diet - I've already given up tomatoes). He has been eating well...which also means that we change LOTS of wet and dirty diapers, and that he's "growing like a weed" as Jamison likes to remind us. :) I thought it would be fun to look at some comparison pictures in his car seat.

Here he is at 4 days old (8 lbs or so) - the day he came home:




















In the next one he's 2 weeks old (9/2):















Here he's 5 1/2 weeks (9/25), over 12 lbs now, and has grown almost 2 in!


Yes, one of my friends accurately called me "a great cow"...and I'm so thankful! Not that having a large baby was ever a goal or concern of mine, but given our feeding struggles the first time around, it is such a blessing to not have those problems now. Since many transplant patients have trouble eating at some point during their treatment, I'm especially grateful for Nathanael's healthy appetite and weight gain now. Of course, I think his longer stay in utero (11 days past my due date, and 3 1/2 weeks longer than his big brother!) allowed him more time to gain weight as well, and so it makes me thankful for those last weeks, uncomfortable as they were.

So when you pray for us, please pray for Nathanael's appetite, pray for his protection from mouth sores during treatment, and for him to continue to eat and grow throughout treatment. One doctor did mention that some babies stop nursing and never start again, yet every doctor we've met has reminded us of the benefits of breastfeeding, especially for a WAS baby, because of the immune benefits transferred through a mother's milk. So if he decides not to nurse for awhile I'll be spending lots of time with a pump, and as some of you know, nursing a baby is much easier - and better cuddle time! - than using a pump. ;)

I will do my best to post more often, as I think it will be good for me to share with you, and I hope it will encourage you as well. We do appreciate your prayers, we love getting your messages - email, phone, FB - and are thankful for all of you who are joining us on this journey.

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.