Back to Cincinnati - It was a short visit at home

From Brad:

Well, it was nice having Bree and Nathanael home for a couple of weeks before they had to go back to Cincinnati for who knows how long. If you sense some frustration, you have your finger on the pulse of our family.

It all started, literally, two days after Bree and Nathanael and Jamison got off a plane at the Collin County Regional Airport in McKinney on April 12th. We went down to Children's Medical Center of Dallas to get acquainted with the doctors and the nurses that would be managing Nathanael's care now that they were home. As a matter of routine, they drew blood for lab work in the morning and by the afternoon, a nurse handed me a printout with the results. Most of the numbers looked very good except for one, his platelets.

Platelets are what your body uses to clot a bleed. The number should be above 130,000. Nathanael's were 66,000. They were around that amount when he was born. They got below 10,000, I think, in the midst of his chemotherapy. Believe me, you don't even want to get a paper cut with platelets below 10,000. Since his day 100 labs (100 days after the transplant on Nov. 23) his platelets hadn't been below 150,000. So, 66 (which is how it reads on the printout) surprised us and I pointed it out to the nurse.

The medical team in Dallas consulted with the medical team in Cincinnati and labs were drawn again the next day. This time his platelets had dropped to 14,000. The next Monday they were still in the teens and his hemoglobin was low. Hemoglobin is what your body uses to transport oxygen from your lungs to wherever else it needs to go. His liver numbers were a little funny and his white blood count was through the roof, higher than it had ever been. The decision was made by both medical teams to bring Nathanael back to Cincinnati to draw labs and for observation.

Towards the end of the second week, things were looking up. His low numbers were rising and his high numbers were coming down, thanks to a drug that I'll talk about in a little bit, and it appeared as if the Cincinnati visit wouldn't last any longer than a week.

On Sunday morning, April 25th, Bree and Nathanael took off from McKinney in a plane the size of my foot. The past two times they've traveled, it was in one hop. This time it was three legs using three different planes, the second of which was built in 1958.

On Sunday evening around 5:00, I received a text from the pilot that Bree's phone had died and that Nathanael had vomited and his color was yellow, including the whites of his eyes. The plane, which was headed for the Blue Ash airport northeast of Cincinnati diverted to the city's municipal airfield where it was met by an ambulance and off to the hospital they went.

On my end it was a little nerve wracking. I was using a website to track the flight and for a little bit, the flight disappeared. All I knew was what I'd received from the pilot and so I called the hospital's main number. After saying that I was looking for my son who had been transported from Dallas, the woman on the other end of the line said, "Mr. Banks." It was comforting to know that the hospital was aware and that they were getting things in motion to provide the needed help.

That night we learned that Nathanael is dealing with Autoimmune Hemolytic Anemia. His body views his platelets and red blood cells as an invading enemy. Untreated, his red blood cells would be whittled down to nothing. They had told us in Dallas that he was dealing with some kind of antibody problem but we hadn't heard the name for it yet.

Apparently, it is not uncommon in bone marrow transplant patients, particularly transplant patients who have Wiskott Aldrich Syndrome, which is what Nathanael has. What's left of his old bone marrow is fighting his new bone marrow. It's like there's a UFC match in his body and the platelets and red blood cells are the casualties. What the doctors need to do is manage the consequences and help the new bone marrow win the fight. He can receive transfusions for when the numbers get too low. The procedure for that is straightforward but his condition makes it hard to find blood that matches. It takes about 12 hours to get blood that he can have. He also receives doses of Ritoxin which apparently kills the cells that form the antibodies against his new marrow.

The good news is that there's every reason to believe the new marrow will win this little fight. It's just that it could take weeks or even months. Priority #1 is to stabilize Nathanael so that his hemoglobin and platelets are at a safe level. Priority #2 is to arrive at a place where the doctors are satisfied that the treatment regimen is working. Once that happens, he can be transferred back to Dallas where the treatment can be continued. Again, this could take weeks or even longer.

So that's where we are today in this odyssey that began with Nathanael's birth on August 19th. Please pray that those two priorities will be quickly achieved and that Jamison somehow is able to understand why Mommy had to go away so soon after coming home.

In Christ
Brad