Stand Still: Engraftment!

If the above photo surprises you, imagine how we felt this morning when the BMT team walked into Aaron's room and asked, "How soon would you like to go home?"

"As soon as possible," we laughed.

"Well, how about today?"

And so here we are tonight, all seven of us, sleeping under the same roof for the first time in a month.

It feels amazing.

When last I wrote, Aaron's ANC had been at 200 for two days.

The next day (Monday, October 7th), we didn't see any change in either his white blood cells or his neutrophils. It being Day +21, the team recommended a dose of neupogen (a hormone that stimulates the bone marrow to make more white blood cells, specifically neutrophils). Dr. Boyer compared it to fertilizer for the grass.

Mike and I were hesitant to agree--not because we had any problem with neupogen itself, but we really wanted to give Aaron a chance to engraft on his own, and it seemed like they were trying to rush him. The team agreed to postpone the neupogen another day but not without giving us many warnings about Aaron's constant risk of infection with his low immune system. Basically every day he didn't have neutrophils was another day to possibly get an infection.

Please don't think I am downplaying the seriousness of an infection at all; we realize we must do everything we can to keep Aaron healthy. However, we did think it was a little bit funny that once Day +21 came, they acted like they had to do something immediately to boost Aaron's counts when the truth is he has had an ANC of 100 or lower ever since he was diagnosed over two months ago. If it was that the chance for engraftment would go down with each passing day, then the urgency made sense. But if it was just the same risk of infection we'd already been dealing with for weeks and weeks, well then, it didn't seem like one day would make any difference.

So after talking about it and weighing the risks and the benefits, we decided to give Aaron's new bone marrow one more day to impress us. If there wasn't any new action on the neutrophil front by the next day, then we would call in the reinforcements.

I actually thought about our scripture a lot on Monday: "Let us cheerfully do all things that lie in our power." I examined all of our efforts over the last four weeks. From mouth care to physical therapy to fluids to medications, Aaron had followed everything the doctors and nurses had asked him to do.

So I moved onto the promise in the second half of the scripture: "And then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."

It was time to stand still.

Mike gave Aaron a blessing. We prayed. I fasted. We waited to see what Heavenly Father would do.

And the next morning (Tuesday, October 8th) . . .

Nothing.

His WBC was 0.6. His ANC was 200.

For whatever reason, his neutrophils had plateaued and did not want to budge from that comfortable number. (I like the way Laynie, one of the nurse practitioners, put it: "They're just baby cells! They're dumb. They don't know what they're doing yet.")

Because there hadn't been any change in his neutrophils in four days, the decision to go forward with the neupogen was easy to make. ("Give him the maximum possible dose!" Mike joked.)

Aaron was all for it. The day before, he kept telling people very matter-of-factly, "I'm going to get neupogen tomorrow."

There was one good thing about his counts during all of this, and that was that his platelets and hemoglobin actually stabilized somewhat and even rose just a little bit on their own. After seeing those numbers plummet week after week, this was so exciting for us. Apparently, Aaron's bone marrow decided to invest all of its energy into platelet and red blood cell production, and not the cells that actually mattered to get him out of the hospital.

Sometimes "standing still" involves using the resources you have available. In Aaron's case this time, that resource was neupogen.

And it did the trick because this morning, Mike sent a text saying that Aaron's ANC had skyrocketed to 1700.

Even with that high of a number, we didn't expect to go home today because they had told us all along that his ANC had to be above 500 for two days before he could be discharged.

But besides the ANC, Aaron was completely ready to go home and had been ready for several days: he was taking all of his medications orally, eating and drinking on his own, wasn't on any anti-nausea medications, had plenty of energy, and didn't have any infections.

According to Dr. Boyer, "Waiting until tomorrow is not going to change anything, so you might as well go home today."

So we took the invitation and ran.

We had to scramble a little bit. We thought we'd have at least one more day to get the house ready, but several family members jumped into action and scrubbed down walls and vacuumed floors while Mike and I went through discharge information, nursing education, pharmacy instructions, etc. With Aaron's nurse, Allison, overseeing us, we changed Aaron's claves and dressing and then flushed and heparin locked his lines.

Meanwhile, Aaron was working on another Lego set, and. as much as he wanted to leave, he also really wanted to finish his model (it was the Statue of Liberty, which we thought was fitting on the day he was set free). By the time we had packed everything up and received all of our instructions, he was almost done, so Mike and I waited around while he finished it in his empty hospital room.

But finally, there was nothing left to do, and we opened the door to Room 4408, and Aaron stepped across the threshold for the first time in thirty days.

A free man.

The child life specialist had made a banner, and as Aaron walked by the central desk in the unit, he was greeted by a whole group of nurses and techs who were ready to send him off. They sang a song, sprayed him with silly string, and let him ring the bell. Many of those people had become like family to us. We love them so much.

On the drive home, I kept asking Aaron questions, "How does it feel to be out of your room? Is it weird to ride in a car again? Look at how the mountain changed colors! Is it nice to have so many things to look at? Can you believe how cold it is?"

But he was pretty quiet. He seemed content to just let it all wash over him and enjoy it.

His journey is far from over: the home health nurse came over tonight, and he'll be at the hospital on Friday for an appointment.

But this chapter is done.

And that feels like a major accomplishment.