Monday, August 3, 2015, David’s white blood cell count had risen from 1 to 8.29, concerning but still low. But the Thursday blood draw showed the counts had risen to 130. For an older person, that would be lethal. With a 27-year-old who had been Army-fit just 17 months ago, it was impossible to know how long he had, but I pressed Dr. Fathi: he told me he didn’t expect David to live more than a few days. People sometimes complain that doctors predict outcomes and are wrong; I was very grateful for his best guess.
Sam arrived Saturday from California; he hadn’t seen David since April. Matt had accepted a job offer at the admissions department of Clark University in Worcester, less than an hour away from us. So, he put most of his belongings in storage in Chicago and drove home, arriving Saturday afternoon.
Friday night Jim slept on the floor next to David’s bed; Saturday Sam slept on the couch nearby. David alternated between sleeping and lying quietly awake, reading The Economist magazine in snatches and sipping warmed honey water. For weeks he’d had throat pain; now he complained of hip pain, probably a result of lying still too long. Martin, the weekend hospice nurse, didn’t expect it to go away.
Annie arrived home from Beijing Monday night, August 9th.
David’s last days were sacred and intensely sad. I am so grateful we were able to provide a peaceful place for him to die.
Victoria was born 40 minutes after David died. Approaching the second anniversary of David’s death, and Victoria’s second birthday, I was ready to make August 12th a celebration of Victoria’s life and October 4th (David’s birthday in 1987) a celebration of David’s. We plan to hold an annual blood drive for MGH in his memory on the second Saturday in October. (Let me know if you're available.)
Since Victoria’s birthday fell on a Saturday this year, we spent the day at the Bronx Zoo. We picked Matt up in Worcester and found street parking just outside the zoo. (It was because Xiomara was in the car: she's the parking space queen.) At the children’s zoo, Victoria proved fearless as she enthusiastically held out her hand to let the sheep and donkeys fed directly from her hand. A mother chided her six-year-old daughter, "See, that little girl isn’t afraid." I felt sorry for the older girl.
At a picnic table we ate Xiomara’s chicken salad, finishing off with some (very tasty and gourmet) vanilla cupcakes I made. Then we watched the sea lion feeding and show. By closing time I was tuckered out: I had only gotten 5 hours of sleep (anticipation insomnia).
The early evening was harder. We visited my younger brother, Mike, in a hospital in Paterson, New Jersey. A kidney infection had caused extremely low blood pressure (79 over 54).
Mike is severely intellectually disabled. As a child he learned to walk and talk, recite the alphabet, and feed and dress himself. But at age 13, his epilepsy got out of control and he went into a state of constant seizure. When he stabilized, he was never the same. For many years now, he has been wheelchair-bound and unable to speak or do most ADLs (activities of daily living).
It was hard to see Mike in a hospital bed with various tubes entering his body. I wonder what he thought, how he was handling the unfamiliar environment and strangers doing strange and sometimes painful things to him.
The visit brought back memories from May of 2014: while I was in Pennsylvania to walk a half-marathon and then visited my dad in New Jersey, David got a C-diff infection and almost died. The surgeons removed his bowels. When I returned to him in Bethesda, I was confronted with a horrible sight: my son unconscious in a SICU bed, his face smooth, beardless, and ghostly white, his body seemingly lifeless. Just two days before, I had visited Mike, who was in a hospital in New Jersey that same week. The impact of seeing first my little brother and then my son unconscious, with tubes in their bodies, and very sick, pained my heart. Would either of them recover? Would David ever be the same?
Except for his death, that was the lowest time in our 17-month experience with David’s leukemia.
When we returned home Saturday night, there was a bouquet of flowers on the porch from some thoughtful friends and a sympathy card in the mail. The next day another dear friend gave me a hug. I don’t need everyone to remember our loss: life moves on. But it feels good when one or two do.
I was glad the hospital visit was after Victoria’s birthday party. Sunday morning I woke up and cried, but I have experienced healing: I didn’t fall into a gaping chasm.
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