Monday, October 07, 2013

The Days


Adi is home with me. He starts off in my bed, on his iPad. I am next to him with my laptop. He kicks me out of my bed and sends me downstairs. I sit down on the sofa and open my laptop. Adi calls me upstairs to help him search for pictures of Honda Odyssey toys. Then he tells me to leave. I do. Then he calls me back to help him search for Toyota Sienna toys. We go on this way for several hours, until Adi wants to come downstairs and sit on the sofa. I later realize this is because his iPad battery died, so he takes my laptop for his own use.

I spend the day doing laundry -- five loads of laundry. I offer Adi food. He refuses. I give him his pills. I wipe off the kitchen counters. I read articles on my phone:

Although most children with acute lymphoblastic leukemia (ALL) are cured, certain subsets have a high risk of relapse. Relapse risk can be predicted by early response to therapy, clinical and pharmacogenetic features of the host, and genetic characteristics of leukemic cells. Though early treatment response can be assessed by the peripheral blast cell count after 1 week of single-agent glucocorticoid treatment or percent of bone marrow blasts by morphology after 1 or 2 weeks of multiagent induction treatment, determination of minimal residual disease by polymerase chain reaction (PCR) or flow cytometry after 2 to 6 weeks of induction is the most precise and useful measure. 
I think about our blast cell count after a week of steroids -- 2700. Too high.  I think about our bone marrow response after two weeks. Also too high. I stop reading and go back to wiping the kitchen counters.

I walk around the house. I take Adi's temperature. I note that he is drooling out of one side of his mouth. I ask him if he is hungry. I ask him if something hurts. I wipe the kitchen counters.

Guy comes home and argues with the man who installed our central vacuum that it is installed crooked, that it is wrong, that it needs to be redone. The man takes a jackhammer and makes a giant hole in our wall. The two of them debate how to solve the problem, but do not reach a real conclusion. The giant hole remains, but the central vacuum works.

My friend calls and asks if we could go out for dinner. I ask Guy, and he thinks that yes, we could. We go out, and for two hours, I almost forget everything. I laugh a lot.


Guy takes Adi for chemo. I take Amit to gan and come home. I start the laundry. I walk around the house. I call Guy. I think about the closet I need to organize.

I go to see my mother's cousin who listens to me talk and tells me about her own family. I come home and wipe the kitchen counters. I use the new central vacuum. I move the laundry to the dryer. I think about the closet I need to organize.

I call Guy, and he tells me that we need to stop asking other people for help. I am affronted. I cannot shake my annoyance. I read:

More than 80% of children diagnosed with acute lymphoblastic leukemia (ALL) can be cured with current multiagent regimens, but subsets of patients have significantly worse outcomes.

I read:

Methods of quantifying early response have become increasingly sensitive, objective, and precise. The Berlin-Frankfurt-Münster (BFM) group has traditionally used the peripheral blood blast count after a 7-day prednisone prephase to classify patients as prednisone-good responders (< 1000/μL blasts on day 8) or prednisone-poor responders (> 1000/μL blasts). In the ALL-BFM-90 trial, 10% of all patients were prednisone poor responders and a had a 6-year EFS of only 34% compared with 82% for those with a good response. 

I think about how we are prednisone poor responders.

I stop reading. I call my husband and tell him I am angry with him. I wipe the kitchen counters.

My children begin arriving home. I can barely stand the noise they make. The normal, ordinary noise of children. It grates. It makes me want to cover my ears and scream.

I think about the closet I need to organize. I think about how quickly the weather turned cold this year. I think about how I wear the same two pairs of pants and two skirts every day. I think about the dinner that is still sitting out on the kitchen counter. I think about how other people handle crises better than I do. I think about anything that I can think about that is not prednisone poor responders.

I think that soon my parents will call. I think that I should be putting my other children to bed. I think that Guy and Adi should be home soon. I think that I am tired.

This is how I spend my days.


Dee said...

Just sitting quietly with you. Thinking of you, thinking WITH you. And hoping, always hoping, and always praying.

Much love to you.

Mara said...

:( I wish we were there. I love you.

Ellis Friedman said...

We love you so much and send you all of our special good thoughts.

shulamis said...

glad you laughed a lot on our night out- avi's still talking about the shwartzenager he ate and i'm still feeling that crazy onion : ) hoping a good laugh yesterday made today a bit easier to get through... sending hugs your way : )

Crystal T. said...

I stopped reading about chances long ago. Chances mean nothing...chances were that my son would never get leukemia, after all. And he did, so...

Now I just try to focus on dealing with the day to day and hope for the best. I do worry about relapse or some secondary infection, but reading about it only makes it worse.