Two Years Ago
March 2015
A few more thoughts about decitabine, which stopped working in mid-March 2015.
I knew something was terribly wrong when Faye, the receptionist at Mass General, called to schedule an echocardiogram for David. His heart had been badly damaged by the initial two rounds of chemo at Walter Reed, in the spring of 2014. Since then he hadn’t qualified for clinical trials because of his poor heart ejection fraction. The only possible reason for Dr. Fathi to request a new echocardiogram would be that the decitabine had stopped working and he hoped David would now qualify for a clinical trial.
In December of 2014, Sam emailed to report that the national “Be the Match Bone Marrow Registry” had contacted him. Long before David's leukemia, Sam had done the cheek swab at a booth on campus at Brigham Young University. Now he had been matched with a patient in need of a stem cell transplant. Sam wanted to help, but his first priority was David. If there was any chance David would need Sam’s stem cells, Sam didn’t want to jeopardize that.
I asked Dr. Chen and it came out that he had requested a search of the registry on David’s behalf. Sam showed up as a match, naturally. The only match, in fact. That’s when we learned that Dr. Fathi hoped the decitabine would bring David’s leukemia into remission. If that happened, they wanted to move quickly with a fresh stem cell transplant. Dr. Fathi said, “I don’t want to get your hopes up, but here I am, getting your hopes up.”
That was December. The decitabine continued to control David’s white blood cell count for three months, but when those counts started going up in mid-March, we knew it had only been working on the bloodstream cells, not the cancerous cells in the bone marrow factory.
So, as I said in last week’s post, March 19th is a doubly difficult day. In 2014 we learned David had leukemia. In 2015, we learned that the latest hope had been dashed. We all had hoped: our family, the doctors. It was a bitter disappointment.
End of March 2017
I’m enjoying the afterglow of my visit to Riverdale two weeks ago. We had a cozy snow day on Tuesday, March 14, and on Wednesday Andrew (nearly 4), Victoria (1 ½), and I spent the day together. The best moment was when Victoria returned from an afternoon doctor’s appointment. She came into the apartment and ran to me, arms outstretched, smiling. My heart sang.
Tuesday, March 28, 2017
Tuesday, March 21, 2017
Decitabine Failure
Two Years Ago
On March 19, 2015, exactly one year after David called me from Korea to say he had leukemia, decitabine, the gentle chemo drug that was keeping the white blood cell counts down, stopped working, dramatically. His counts doubled in three days. So, he went back on hydroxyurea, that old workhorse of a drug, which doesn’t cure leukemia but temporarily keeps the bloodstream cell count down and symptoms at bay.
March 19, 2017
I’ve been putting off writing this blog post. When I finally got down to work today, I realized that not only was Sunday, March 19, the third anniversary of David’s phone call, it was the second anniversary of the keen disappointment of decitabine failing. I've had this experience before: I struggle to sit down and write a blog post. Once I finally get started, I find that some significant and painful setback occurred exactly two years before. It surprises me every time, though my sub-conscious seems acutely aware of it, or why would I avoid writing?
On Sunday, my friend Carri drove me to our church meeting in Cambridge. “How are you doing, Mary?” I have a hard time identifying how I'm doing. I function well; I'm busy and happy. But always there, just below the surface, is the knowledge that David is dead. Yes, I believe he continues as a distinct personality in the spirit world. Yes, I believe I'll see him again, healthy and perfect in body and mind. But mortality feels very long. He still isn't living a normal young adult life. He still isn't going to come home for a visit or make the summer retreat, when our family will spend a week together in August. It's sad; it just is.
On March 19, 2015, exactly one year after David called me from Korea to say he had leukemia, decitabine, the gentle chemo drug that was keeping the white blood cell counts down, stopped working, dramatically. His counts doubled in three days. So, he went back on hydroxyurea, that old workhorse of a drug, which doesn’t cure leukemia but temporarily keeps the bloodstream cell count down and symptoms at bay.
March 19, 2017
I’ve been putting off writing this blog post. When I finally got down to work today, I realized that not only was Sunday, March 19, the third anniversary of David’s phone call, it was the second anniversary of the keen disappointment of decitabine failing. I've had this experience before: I struggle to sit down and write a blog post. Once I finally get started, I find that some significant and painful setback occurred exactly two years before. It surprises me every time, though my sub-conscious seems acutely aware of it, or why would I avoid writing?
On Sunday, my friend Carri drove me to our church meeting in Cambridge. “How are you doing, Mary?” I have a hard time identifying how I'm doing. I function well; I'm busy and happy. But always there, just below the surface, is the knowledge that David is dead. Yes, I believe he continues as a distinct personality in the spirit world. Yes, I believe I'll see him again, healthy and perfect in body and mind. But mortality feels very long. He still isn't living a normal young adult life. He still isn't going to come home for a visit or make the summer retreat, when our family will spend a week together in August. It's sad; it just is.
Tuesday, March 14, 2017
Pi Days
Two Years Ago
I bought secondhand tickets to a Broadway show, If/Then, excited to see Idina Menzel in person. After the show, Peter picked up Xiomara and Andrew, flying home from Honduras. Next morning, we all went to church in Kingsbridge: David played with Andrew, who had just learned to say 'camisa' (shirt).
Happy Pi Day 2017!
Yesterday I drove to Clifton, NJ, to visit my brother Mike during his dinner. Today we had a snow day in the Bronx: Peter and Xiomara stayed home and we played soccer in the apartment hallway. In the afternoon, Andrew and Peter and I ventured out to play, but the snow was like fine sand, not snowball material at all. The icy gusts nearly blew Andrew over as he tried to scoop out my car with my dad’s blue plastic shovel with the telescoping handle. He and I went home while Peter finished shoveling out my car. (I had brought a full-size shovel from home for just this purpose.)
We had tuna salad sandwiches for supper and, since it's Pi Day, I made a rhubarb pie with fresh sliced strawberries.
Queen Victoria was not amused.
Tomorrow it’s back to work for Peter and Xiomara. The kids and I will venture out to the library for toddler storytime.
I bought secondhand tickets to a Broadway show, If/Then, excited to see Idina Menzel in person. After the show, Peter picked up Xiomara and Andrew, flying home from Honduras. Next morning, we all went to church in Kingsbridge: David played with Andrew, who had just learned to say 'camisa' (shirt).
Happy Pi Day 2017!
Yesterday I drove to Clifton, NJ, to visit my brother Mike during his dinner. Today we had a snow day in the Bronx: Peter and Xiomara stayed home and we played soccer in the apartment hallway. In the afternoon, Andrew and Peter and I ventured out to play, but the snow was like fine sand, not snowball material at all. The icy gusts nearly blew Andrew over as he tried to scoop out my car with my dad’s blue plastic shovel with the telescoping handle. He and I went home while Peter finished shoveling out my car. (I had brought a full-size shovel from home for just this purpose.)
We had tuna salad sandwiches for supper and, since it's Pi Day, I made a rhubarb pie with fresh sliced strawberries.
Queen Victoria was not amused.
Tomorrow it’s back to work for Peter and Xiomara. The kids and I will venture out to the library for toddler storytime.
Wednesday, March 8, 2017
The Dollhouse
Two years ago
Exactly two years ago, March 7, 2015, Cami and her kids came over for a photo shoot. For Christmas, back in the 60s, when my younger sister was about six, my dad built a blue and yellow wooden dollhouse for Creative Playthings dolls and furniture. (I just Googled them. They are described as "mid-century" toys. Sigh!)
After a generation of sitting in my parents' attic, Cami's kids unpacked the toys and played with them by the fire.
The 10-month-old was too young for the photo shoot, so David gave his best avuncular effort to charm her. Sadly, she was not to be consoled, but did consent, later, to sit in the dollhouse.
Beginning of March, 2017
We had a delightful day yesterday, being tour guides for some friends we hadn't seen for 40 years. James was my bishop when I first joined the LDS church in New Jersey, back in 1977. The weather was fine, if a bit chilly; we walked to the Lexington Green and told them the familiar story of the Battle of Lexington. (We live 1/3 of a mile from the Green.) We saw the diorama of the battle at the Visitors Center and our friends bought some souvenirs. Then we drove to Lincoln, stopping at Paul Revere’s Capture Site. (He never made it to Concord to spread the alarm. Samuel Prescott, who had been out after midnight courting his sweetie, escaped the Redcoats and rode to Concord. Paul Revere was released, horseless, and walked back to Lexington Green.) In Concord we dined at The Colonial Inn, then visited the Old North Bridge and Author's Ridge in Sleepy Hollow Cemetery, final resting place of Thoreaus, Emersons, Hawthornes, and Alcotts.
I had a cold, but the tour guiding kept my spirits up. When our friends left, however, I was exhausted and took a late afternoon nap. I slept till 7:30, too late to go to the monthly Compassionate Friends meeting. I have appreciated having a place to talk about David and share our loss with other parents. There’s always next month.
Exactly two years ago, March 7, 2015, Cami and her kids came over for a photo shoot. For Christmas, back in the 60s, when my younger sister was about six, my dad built a blue and yellow wooden dollhouse for Creative Playthings dolls and furniture. (I just Googled them. They are described as "mid-century" toys. Sigh!)
After a generation of sitting in my parents' attic, Cami's kids unpacked the toys and played with them by the fire.
The 10-month-old was too young for the photo shoot, so David gave his best avuncular effort to charm her. Sadly, she was not to be consoled, but did consent, later, to sit in the dollhouse.
Beginning of March, 2017
We had a delightful day yesterday, being tour guides for some friends we hadn't seen for 40 years. James was my bishop when I first joined the LDS church in New Jersey, back in 1977. The weather was fine, if a bit chilly; we walked to the Lexington Green and told them the familiar story of the Battle of Lexington. (We live 1/3 of a mile from the Green.) We saw the diorama of the battle at the Visitors Center and our friends bought some souvenirs. Then we drove to Lincoln, stopping at Paul Revere’s Capture Site. (He never made it to Concord to spread the alarm. Samuel Prescott, who had been out after midnight courting his sweetie, escaped the Redcoats and rode to Concord. Paul Revere was released, horseless, and walked back to Lexington Green.) In Concord we dined at The Colonial Inn, then visited the Old North Bridge and Author's Ridge in Sleepy Hollow Cemetery, final resting place of Thoreaus, Emersons, Hawthornes, and Alcotts.
I had a cold, but the tour guiding kept my spirits up. When our friends left, however, I was exhausted and took a late afternoon nap. I slept till 7:30, too late to go to the monthly Compassionate Friends meeting. I have appreciated having a place to talk about David and share our loss with other parents. There’s always next month.
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