One Step Back

Nov 16, 2019

Sometimes progress takes the "two steps forward, one step back" approach, and that's what it has felt like this week.

Following the bounteous platelet count reported last week, Aaron's platelets dropped to 231 and then at the next appointment dropped even further to 160. The doctor assured me that a) this is normal for platelets to bounce around (apparently they are very responsive to any kind of stress occurring in the body), and b) a platelet count between 150 and 200 is actually favorable to one above 250 (though their reasoning for this was unclear).

I should find this encouraging, but I have become rather suspicious of optimistic comments from doctors. So often, it seems like the BMT team acts positive and cheerful about one thing, but then the next week, after things have slightly shifted and changed, they admit that the earlier numbers concerned them a little bit, but now everything is looking just great. They adjust their expectations to agree with the data. 

Aaron's hemoglobin has also been steadily falling (again). Unless he somehow manages to pull up and save it, it's looking like another transfusion next week. 

We also got the results back from Aaron's latest chimerism test (which looks at the ratio of Aaron's cells to Maxwell's cells). Last time, all blood cells were 100% Maxwell's, except for the T-cells, which were only 47%. This time, the T-cells were split right down the middle--50% Aaron's and 50% Maxwell's. Although the doctors aren't going to do anything about it at this point, it is not the ratio they would like to see. And, judging from something Dr. Boyer said last week, I think he was expecting Maxwell's percentage to go up quite a bit more than 3%.

My emotions have followed a similar trend this week, gradually dropping into the frustrated, discouraged, and helpless range. They took an especially big nose dive on Wednesday afternoon when Ian let out a gigantic sneeze, and it was obvious that somehow, just like that, he had a full blown cold.

We immediately quarantined Aaron to the basement, but it was too late. Within two days, he had all of the same symptoms as Ian and was miserably blowing his nose in bed.

We had one job (keep Aaron healthy), and we failed. That's what it feels like to me.

For the past month, we have said no to many activities; been the obnoxious kind of friend who checks (and then double checks) to make sure there are no runny noses before agreeing to a play date; kept the two-year-old out of nursery; obsessively cleaned the house; burned our way through an impressive number of Clorox wipes; changed clothes anytime we've been somewhere other than home; quarantined sick children; and washed/sanitized so often that our hands are chapped and bleeding.

These things were not an inconvenience because it was for Aaron's good. But those sneaky germs infiltrated anyway, and it makes me wonder if any of it was even worth it.

There are basically two reasons why they don't want Aaron to get sick: His body's immune system is currently being suppressed, so he doesn't have the ability to fight off an infection like a normal person. And also, his bone marrow is still so new that an infection could possibly wipe it out.

So we are watching him very closely. As long as he doesn't get a fever or have any respiratory problems, he can stay at home. He is on prophylactic medications to guard against big infections, so hopefully this little one will merely offer a trial run to his brand new white blood cells. Fingers crossed that even in their sleepy state they can defend against the siege.

Meanwhile, yesterday his platelet count was back up to 217 and his hair is beginning to grow back in, so I'll take both as good omens that we're on the upswing.


  1. What a roller coaster, it sounds so hard! We always pray for you guys.

  2. Here's hoping the little cold goes away quickly! It's not like he could have dodge more germs in a hospital -- those are full of germs!

  3. Poor Aaron and Amy! I'm so sorry!!! I felt a similar way when my kids picked up lice at school two years ago. I was extremely vigilant about treating everyone properly, cleaning clothing and bedding, shaving the boy's heads, etc. But even as I was doing all the necessary work I realized with frustration that even with all of my efforts to eliminate lice from our lives, other parents might not be so careful and my kids could pick up lice at school again, restarting the whole painful process. You're doing a great job, Amy! Hope Aaron is on the mend. (Beth Inouye)


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