Overachieving

On Thursday, I woke up to a grim 209 ANC, and I wondered, as maybe you have, should we have gotten transplant cells from one of my more cooperative children? Because I was picturing those nutraphils being a little defiant. Looking a little bit like this:

But of course, just when I lose faith (do those nutraphils read this blog? or my mind?), they overachieve. Today, ANC 7031! Seven thousand and thirty one. Never underestimate Harriet, or any of her parts.

At least some of the nutraphil overachievement is attributable to a new drug we tried yesterday, called GCSF (granulocyte colony stimulating factor), which encourages the nutraphils to come out and be counted. While everyone was hopeful and expectant this would pull us above five hundred, seven thousand after one dose was over the top. Samson is getting another dose tonight, which makes me feel like he is going to have nutraphils coming out of his ears tomorrow. In case they decline again in the next few weeks, he can also get this drug at home. I had to watch a video to learn how to inject the drug in his thigh.

More positive developments: we got the marrow test results back, and they are good. No sign of monosomy 7 or any abnormal appearance in the cells, which means no sign of MDS. Also, chromosome testing showed that 99% of Samson's blood cells are donor cells, and only 1 % of Samson's old cells remain. The goal is for there to be 100% donor cells in the marrow, but a few remaining Samson cells are expected at this early stage. I have to be happy that this puts us in the lowest relapse-risk category that was possible -- but 30% chance of relapse still feels way too high. Dealing with that fear and worry will be an ongoing project.

The next planned marrow aspirate is at day 100. By then, the donor cells should be at 100%.

It is hard to imagine that we will drop below a 500 ANC tomorrow, so it would be a fever or increased GVH symptoms or a similar issue that would keep us here another day. Everyone is expecting us to discharge tomorrow afternoon. I met with the pharmacist today and got three big bags of medications to take home with us, as well as a schedule and lots of instructions. I have used a lot of the medications at home before, and most of the others while in the hospital, so I am pretty comfortable with the plan. Samson is on 17 medications, not including Tylenol. Building a new immune system does not come cheap.

I did some more central line practicing today too -- just flushing the line with heparin and changing the dressing again on my plastic friend Chester. I am going to change it myself on Samson tomorrow with Nurse Lora supervising and then I'm on my own. The dressing change isn't complex, but it's just really miserable for Samson so he writhes and screams and I want to make sure I'm comfortable with what I'm doing so I can be as quick as possible.

We also had some more conversations, live and email, with the doctors about precautions for sickness. This is a big focus for me because I want to have some clear guidelines in my own head about where I'm taking him (almost nowhere), and where I'm not (pretty much everywhere), but also who comes over, and under what circumstances. It has been hard being isolated a lot of this year, but it must continue for awhile.

Dr. Chang this morning said it was his hope that Samson would not be tested with a virus for a year or so. Which shows me that he may be smart but he lives on an entirely different planet from me. Transplant patients aren't supposed to darken the door of a school for months; Samson basically lives in a preschool of four. But we will do what we can.

Of course, no sick people can visit us, and we can't visit them. It is almost as important for me not to get sick as it is for Samson, as I am obligated to provide a lot of close physical care with feeding and diapering, and he inevitably gets what I have. So, if you are one of the wonderful people in our lives here in Portland, the greatest gift you can give us for now is to be paranoid, if you are visiting, about not only whether you feel sick but whether you or your children have recently been exposed to sickness and might be coming down with something or contagious.

Other than clearly sick kids, Samson needs to avoid unvaccinated children, who have a greater chance of exposing him to viruses like chicken pox that would be disastrous for him, as well as anyone who has recently (within a month) gotten a live vaccine. People who have had a live vaccine, like the one for chicken pox, can shed virus that wouldn't make normal people sick but may infect an immunocompromised person. Samson himself lost all of his vaccine protection with the bone marrow transplant (Harriet's doesn't transfer, unfortunately), so he will start from the beginning and be re-vaccinated one year post-transplant. He is ineligible to receive vaccinations this year because his body is not capable of responding to them; the killed vaccines wouldn't hurt him but they wouldn't help him either. I think they do make an exception for flu vaccine, just because it is so important they figure even a smidge of protection is better than none. He will hopefully be able to get that in the fall.

This has been a long day. It involved some misery for Samson, maybe from the GCSF, which can cause bone pain. My tired brain just had to make a little too much effort today, making all the arrangements for equipment and medications and followup appointments that will get us out of here. And also our fish Violet died this morning -- I found her on the bottom of the bowl after my night off at home. When I told Aaron, he said she had been looking "tired," which I think means she died yesterday and he forgot to tell me. Anyway, it required more texts and conversations than you might think to arrange that Aaron would leave work, get a new fish, and, while Kandis was up here with the kids visiting and then dining at Burgerville, Aaron would deposit a new identical purple fish in the fish bowl, and call her Violet, thereby avoiding an untimely discussion of death and related issues.

For all of these reasons, I started writing this twelve long hours ago and am just coming back to wrap it up now. Thanks for all your love -- hope it sends us home tomorrow.