New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Tuesday, March 30, 2010

Please pray (from Brad)

Sunday night, Nathanael developed a full body rash that the doctor today diagnosed as graft v. host disease. For some reason, either related to his central line infection or just because, his body has started to reject the transplant.

As I’ve had it explained to me, GVH (graft v. host) comes in two forms, acute and chronic. Chronic is lifelong and therefore must be controlled over the course of one’s lifetime, like someone who’s had an organ transplant and has to take medication their whole life so their body doesn’t reject it. Acute can be controlled and managed until such a time that it isn’t a factor anymore. I guess as long as it doesn’t become chronic, then they can treat it until his immune system recovers to where it won’t be a risk anymore. Thankfully, Nathanael is dealing with acute GVH right now.

Bree and Nathanael are in the hospital as they have been for the past ten days. Hopefully, they can come back to the apartment in a day or two but they will be in Cincinnati for an indefinite amount of time.

This is obviously difficult to deal with. We were making plans for everyone to come home and now it will just be Jamison and me. Hopefully, it will just be a matter of weeks before they release Nathanael to Texas and not longer.

God is in control, period, and He is always good.

UPDATE: The GVH rash is beginning to clear, but it looks like Nathanael will still be in the hospital through Easter Sunday. Please continue to pray!

Saturday, March 27, 2010

Holding Pattern

From Bree (still in the hospital):

So here we are, in a holding pattern. Nathanael is doing great, by all accounts, but still needs to be treated with a triple tail of antibiotics for the two bacteria that were discovered in his culture from a week ago. It looks like he'll be on those for another week or so. The good news is that the doctors will PROBABLY let us go back to the apartment early next week, since they trust me to administer two IV antibiotics, IV fluids, one oral antibiotic, and the rest of his oral meds (given through his NG tube).

What we don't know right now is how long we'll need to stay in Cincinnati following this latest episode. We had hoped to be back in Texas already, so staying longer is a bit of a disappointment. HOWEVER we are thankful that Nathanael is doing well, we still have a place to live, Brad and Jamison are doing fine (and are visiting me each evening out in front of the hospital...I hop into the van for a brief visit/storytime and hugs). In the ideal world I think we'd all be home in time for Easter, but since it takes about two weeks to arrange a flight our guess is that the earliest we can all be home is the weekend after Easter. So Brad will most likely fly back for Easter Sunday, then come back here to take care of us, help us pack, and drive the van back.

What's funny is that even once we get back our journey is far from "over". We'll still probably need to make weekly or bi-weekly visits to the doctor for IVIG and check-ups, and we'll still maintain a somewhat limited social schedule, keeping Nathanael away from most public places for many more months. However, I am looking forward to a LITTLE bit of "normalcy" once we're back home.

Please keep us in's really tough to keep a positive attitude and to not get discouraged. We love hearing from you, and look forward to seeing many of you soon!

Sunday, March 21, 2010

Help Needed: Trusting God

Here's an opportunity for us to trust God:

Brad needs to be home to preach the next several Sundays.
Nathanael is currently in the hospital, and spiked a fever again last night, so the earliest we can go home (to the apartment) is Tuesday morning.
I'd like to keep Jamison with me until we all return home together.
I don't think I can care for two little boys on my own for more than a day or so.

Based on what I've listed here, I think we need the following:

Frequent-flier miles to get Brad back and forth to Dallas.
Help for me, even if it's just a few hours each day, so I don't feel so alone and so someone can help me with housework so I don't get overwhelmed.

Of course, our Heavenly Father knows what we's what I need to think
about today, from Matthew 6:31-34:

"Do not worry then, saying, 'What will we eat?' or 'What will we drink?' or 'What will we wear for clothing?' Only people who don't know God are always worrying about such things. Your Father in heaven knows that you need them. But more than anything else, put God's work first and do what He wants. Then the other things will be yours as well. So don't worry about tomorrow. It will take care of itself. Each day has enough trouble of its own." (CEV & NIV)

Saturday, March 20, 2010


From Brad:

So to read Bree's last post would give you every indication that we are about to head back to Texas for good. Yesterday we had a regularly scheduled appointment with a home health nurse to change Nathanael's central line dressings and caps. As Bree mentioned, it was a doozy replete with multiple vomiting episodes by Nathanael. When the appointment was over, the nurse coordinator asked Bree to bring him in just so they could be sure everything was OK. They went in at 1:00 and were released to come home at around 8:00.

Bree got home and I, trying to be the good husband as well as finding an excuse to do what I wanted, left to procure some ice cream for her, for her I said. I got home. Bree had changed into her pj's and everything was pointing towards a relaxing evening where we'd watch a little basketball and then get some much needed sleep.

In preparation for giving Nathanael his evening medications, Bree took his temperature. For the first time in his life, Nathanael had a fever. The thermometer read 38.5 Celsius. We checked it again and it was 38.3. He had a fever. Now, for any other child, this isn't that big of a deal. Give some Tylenol, stay on top of it. For a child who's recently had a bone marrow transplant, it's cause to call the doctor and go into the hospital. So, at 10:00 at night, Bree packed up Nathanael and took him in and that is where they are right now. He's receiving antibiotics as well as a transfusion of packed red cells because his hemoglobin is low which isn't as big of a deal as it might sound.

I don't have any idea when they might be released. I also have no idea how this will impact their coming home. If I had to guess, I'd say it postpones it a week but who knows. The good news is that he hasn't registered a fever in the hospital so maybe he started to come down with something and his immune system dealt with it. That would end up being great news. Please pray. We love Cincinnati but we desperately want to get back to Texas.

Friday, March 19, 2010

Pray for could be a long week!

Please pray for all of us this week. Here's the latest:

The boys and I hope to depart Cincinnati on Thursday via Angel Flight/Grace Flight. (Our plan is for Brad to clean up the apartment, get some sleep, and depart on Friday in the minivan.)
  1. That means we need to return LOTS of items to people on Thursday, and may need some help late next week with cleaning, etc. in the apartment.
  2. That also means that we will need a ride home sometime on Thursday (from the McKinney airport - preferably in a car that doesn't transport pets or kids, just to minimize risk),
  3. I will probably need help (a grocery run, as I won't be able to leave the boys to get to the store, and possibly some freezer space to borrow - about a cubic foot or so...).
  4. I may need help on Friday while taking care of two little boys by myself in a home I haven't seen in six months. It'll feel like a new place!
  5. Once Brad arrives I will probably need help unpacking.
Oh, but if Nathanael gets sick we may NOT get to go home next week. He and I spent the day in the hospital today after the home health nurse who came today for his lab draws thought he was breathing too fast and his heart rate was a bit elevated (tachycardia is the technical name - which comes from the Greek word tachos, which means "fast" and cardia which means "heart" - Brad thought you might want to know...). So we went in, had lots of tests done, got a dose of rocephin (broad-spectrum antibiotic) just in case there's something "brewing" and we were dismissed around 7:45pm. That was after a home health visit that lasted from 11:00am to 1:00pm and included LOTS of crying during a dressing change procedure that seemed to go too slowly...I'm still learning.

Pray for Jamison. He woke up not feeling well today, and we're praying that he is well, but are trying carefully to maintain as much distance as possible between the boys. That's a bit of a challenge, but it could be harder for Brad and I not to pick up something if Jamison has it. Pray that we would all get the rest we need to stay healthy.

Pray for Brad and I, that we would be carefully watchful this weekend. We need to watch Nathanael very closely, so that if anything changes we'll call the doctor on call, and then a decision will be made about whether or not we need to go to the Emergency Department for evaluation. Pray that we don't have to go there!

Most of all, pray for us to TRUST God in the midst of this time of change and waiting. We want to have attitudes that are pleasing to Him, but that's sure not easy in times of stress and sleep-deprivation. We also want this to be used for His glory...though we often have no idea how that's possible. We need to trust and have faith, and we pray that others would join us in that as well.

So after a long day I am thankful for a husband who went to UDF to get me some chocolate/marshmallow ice cream. :)

Hope you enjoy the pictures! Jamison LOVES his new "I Dress Me" chair - a generous gift from a wonderful friend. The last one shows him "helping" Pop Pop George fix the bathtub last weekend. :)

Sunday, March 14, 2010

Scroll down the page... read my "new" post. Even though I just wrote it the other day, I started to write it before Brad posted the top entry, so it was placed farther down the page. I haven't bothered to figure out how to change the date yet (and that's not high on my list of priorities!).

;) Bree