Mother's Day

Samson didn't bring me breakfast in bed this morning, but he did deliver a white cell count of 1.2 (1200), an ANC of 288, and a lot of laughs, which made for a pretty great mother's day morning. Later on, Aaron brought Jo, Harriet and Cash up to give me cards and treats and take me away for the afternoon. And, to add to my riches, I got some amazing mother's day wishes and encouragement from you, my friends. I love that you are reading this, which helps me keep writing it. I am so touched by your comments, which are way too kind but give me something to live up to. Thank you for keeping me company and cheering me on.

I am awfully hopeful today. We are on a steady upward climb since Thursday's first neutrophil count. A recount later that day was higher than the original 108, so we ended Thursday with an ANC of 132. Then Friday 160, Saturday 200, and today, Sunday, 288. We are ever closer to the 500 mark, where my big kids can come in Samson's room and we can enjoy some much needed family time.

As Samson's counts go up, some things improve, like his mucositis pain. Other things get a little harder. He is having skin rashes that come and go. Most of his body at this moment is splotchy red and hot, so we just gave him benadryl. Also he is having some stomach troubles. Both of these things are typical of graft versus host disease and are not surprising or even really bad. I think everyone, including me, will count it as a blessing if his symptoms stay this limited. Remember, we want a "graft versus leukemia" effect, where the new cells fight Samson's old bad cells, overcome the MDS and prevent relapse. The GVL effect is known to be stronger where there is also some GVHD. So this, too, is just part of the price of admission to the good life. And good sport that he is, Samson is just babbling and drooling -- and yes, even laughing -- through most of it.

One thing he did not laugh at was last night's red blood cell transfusion, which despite all kinds of pre-medications was another allergic disaster. Next time we will pre-medicate and mid-transfusion medicate. It just seems like an extra dose of misery we should be able to avoid.

Tomorrow marks four weeks since we entered the hospital and it is feeling too long. I am tired. Even when Samson sleeps, mine is in snatches. From 11 to 12, from 1 to 2, then 3 to 4. I usually get a good snooze in from 5 to 7. Medications and vital signs at midnight, then more vitals and blood work at 4 a.m. are always big wakeups and I have trouble getting back to sleep with too much on my mind. Then there are always a few IV beeps that need me to call a nurse to resolve. And the random wakeups: last night the nurse weirdly had to empty Samson's trash can at 1:30. And Samson, despite his near-total perfection, wakes me up sometimes too. Wet diapers, bed hogging, that type of thing. I need a few nights of catch up. Aaron said Harriet prayed tonight that mama's headache would be gone, which was nice, especially since I hadn't mentioned a headache. I must be acting like a headache.

Also wearing thin is the isolation. I took a picture of one of Samson's doctors so you can see the getup everyone wears when they come in. We have been quarantined like this for all of this hospitalization and many of the others, so I should be used to it now, but it is odd to live in a world of yellow gowns and half faces.

After I got to spend a sunny afternoon with Josephine, Harriet and Cash today, it was -- as always -- hard for me to pack them up and bring them here for the handoff to Aaron. I live for the calls and texts with their little bits of news. Aaron called me a while ago to say goodnight and give me the evening report. Lately we have been worried especially about Cash, because he has developed a lot of separation anxiety and, when I am home, he becomes near hysterical if I even walk into another room without preparing him. He is terrified that I will leave him. He has also taken to using baby talk or just motions rather than his words when he wants or needs something. It is both frustrating and heartbreaking, and we feel there is no way to fix it except to make this be over.

Tonight, after we traded kids, Aaron took the big three to the grocery store to pick up a few things. Cash started -- apparently -- doing his thing, pointing at a watermelon and saying something unintelligible. Aaron stopped him, saying Cash, enough with the silly talk, use your big boy words. But Josephine interrupted Aaron to say, oh Dad, he's just saying the word for watermelon in Mandarin! How unexpected, how marvelous. These boys, sometimes they just surprise you.