Neutrophils Continue to Recover

            The answer to my therapist’s question yesterday, “What’s happening?” was “Nothing.” He pointed out to me that after the 6 months we’ve had, that is great news. It is, but the waiting for news is exhausting.

            David has recovered from the high dose cytarabine chemo. He’s nowhere near the level of an active Army medic, but we’ve revised our metric over the past half year.

David’s white blood count (WBC) has continued to rise:

September 18: .7

September 22: 1.3

September 25: 1.6

In about a week, if the neutrophils, first responders of the immune system, continue to increase, they will do another bone marrow biopsy. Then we’ll wait for the results to come back.

            The molecular results from the last biopsy showed no AML-ITD, the original mutation found at the end of March. AML-TKR (tyrosine kinase receptor) and RAS are now present. If remission has not been achieved by the donor lymphocyte infusion (DLI), which was performed September 11^th, we’ll see what our options are. Admission to a clinical trial requires a higher ejection ratio, which would indicate that his heart is continuing to recover from the daunorubicin chemo back in April and May.

            In happier news, Jim and I are going on a Road Scholar tour, “New England Railroads”, for a week, starting Sunday evening. We’ll hear lectures from local historians and ride old-fashioned railroads in Connecticut, Vermont, New Hampshire (to ascend Mount Washington on the famous Cog Railroad), and Cape Cod. Since fall colors move down from the north, we’ll travel from Connecticut, where the first reds and oranges are just appearing, to the famous Kancamagus Highway in the White Mountains of northern New Hampshire. I’ve always wanted to experience that road in the fall, and we’ll be in a “motor coach”, with no driving duties at all. On NewHampshire.com the report for September 24 was that “the colors are really beginning to pop”.

            Thank you to all our friends who have volunteered to be “on call” in the unlikely event that David needs medical care in our absence, both during our whirlwind drive to Perrysburg, Ohio, last weekend and this New England trip. We’re grateful for everyone’s love, support, and prayers.

Leukemia Still Detectable

            I was quite disheartened last week, and struggled unsuccessfully to post, but there is some positive news today.

           

Last week’s report:

On Thursday, 11 September, we got the disheartening news: despite the high dose cytarabine chemotherapy, leukemia was still detectable in the bone marrow biopsy on Monday, 8 September. The marrow is “hypocellular”, meaning there aren’t many cells, thanks to the chemo, but some of them are leukemic blasts. Blast!

            Dr. Chen said, he wasn’t happy with the results, but we’ve still got options.

            So, on 11 September, David received a dose of Sam’s lymphocytes, collected in August. Hopefully these lymphocytes will stimulate the previously transplanted stem cells.

The technician rolled a metal cart into the room, which held a covered 2 gallon turquoise toy garbage can, and a large metal machine the size of our desktop printer. Wisps of nitrogen vapor swirled, as he removed the small plastic bag from the bucket. The fuchsia-rose-colored blood came into the room at negative 85º C. Placed into the warming machine, the bag was body temperature in just a few minutes. The infusion into the port in David’s chest took about 10 minutes. Dr. Chen looked in afterwards. “I missed the main event!” Dryly David replied, “It was really exciting.”

Stored at negative 170ºC, the lymphocytes have a 10 year expiration date. They were able to harvest 2 doses from Sam. They may infuse the second dose in about a month.

            Over the weekend, David was able to go with us to Carl and Susan’s second home in the Poconos (northeast Pennsylvania). We spend a drizzly Saturday in their cozy house, talking, watching a movie, and eating the delicious food Susan prepared. Also drinking diet white birch beer soda. Why doesn’t Massachusetts have white birch beer? Does any place other than Pennsylvania offer such a delicacy? On our emergency ice cream trip to the Weis Market we picked up 3 cases to bring home. Come on over and try some.

[I’m polling the group: 1) Have you tasted birch beer soda, of either the white or red sort? 2) Can you buy it locally?]

Back to today, 18 September 2014:

            It’s Day 25 from the start of the high dose chemo. David’s white blood cell counts have started to rise, from a steady .1 (practically zero: the target range 4.5 to 10.), to .7. We hope he recovers (a 2 will be acceptable) by day 35.

            His platelets and red blood cells have started to recover as well: today he didn’t need a transfusion of any kind. The platelets were 6 on 15 September and 21 after a transfusion on that same day. Today they are 23, which indicates his bone marrow has restarted production.

A Fast for David

              We spent a quiet Saturday at home. David continues to eat and is in good spirits. His eyes were very sensitive to light yesterday, and today he still couldn’t read his iPod. High dose cytarabine has known ocular side effects. He was prescribed eye drops for the first few days after chemo; he resumed using them yesterday.

            On Friday his white blood count was .2 (happy range is 4.5 to 10), up from .1 a few days before, but still very low. His platelets were also low, which increases the risk of bleeding. Jess Driscoll, the nurse practitioner, wanted to give him aplatelet transfusion, but the MGH blood bank was low, and so she sent us home with the warning not to play with any knives. He’ll probably receive platelets Monday.

            On Monday, Jess will perform another bone marrow biopsy. The preliminary results take about a week. We hope for no detectable leukemia blasts. The situation is grave. On August 15^th, Dr. Fathi told us that if David were an older man, no further treatment would be recommended. Since David is young and relatively strong, he was willing to try a round of high dose cytarabine. Now we wait to see if it had the desired effect.

            Our church congregation (the Arlington Ward) and the Cambridge Stake leadership are dedicating their monthly fast to David’s health and to give strength and comfort to our entire family. I know our Heavenly Father lives and He loves us. If it is the Lord’s will, faith, prayers, and fasting can call down great blessings and even miracles from heaven. Please join us in this prayer.

Day Ten, Back in Lexington

David came home from MGH five hours ago. The oncologists wanted him to stay in the hospital, since his white blood counts are extremely low: they fully expect him to have an infection and they’d prefer he was in the hospital with immediate access to antibiotics. However, David was insistent, and I promised to bring him back to the hospital at the first sign of fever. Once outside, he walked briskly to the car, which was wonderful to see. His nausea has abated and he’s able to eat food!

           This morning, before he left Lunder 10, he had two transfusions: red blood cells and platelets. He will return to Cox 1, the outpatient clinic, on Friday and again on Monday, to monitor his blood counts, and possibly have more transfusions.

            In negotiating for his release, we learned from the oncologist that although clean habits at home are good, the greatest risk of infection is from the normal bacteria that live in his gut. Not much we can do about that, except frequent hand-washing.

            For my part, I thoroughly cleaned the house. It may not matter much, but it is the one thing I have control of. Annie told me of a very difficult time on her Taiwan mission. Everything was hard. So, she stood by her air conditioning thermostat and switched it on and off. On and off. She could control that: on and off. For me it’s cleaning and food safety. I can do that.

Cytarabine Round Completed

            Happy Labor Day! We arrived at MGH the Friday of Memorial Day weekend for a week on Lunder 10, the inpatient cancer floor. Now David’s been back in Lunder 10 for a week, public school is in session, and dusk falls earlier once more.

            Sunday morning David had the final 3 hours of high dose cytarabine; he ate a bit of breakfast, but nausea is still an issue. An anti-nausea medication that he tolerated earlier, Zofran by IV, gave him an odd reaction. Dehydration would cause the cytarabine levels in the bloodstream to rise and raise the risk of cerebellum damage. The cerebellum is the back part of the brain that controls fine motor movements and coordination, including the ability to walk.

            For now, we wait and see. Dr. Chen and Dr. Fathi will decide when to give David the DLI (Donor Lymphocyte Infusion), using the white blood cells Sam donated two weeks ago.

The hope is that the cytarabine chemotherapy will destroy most of the leukemia over the next week,  and Sam’s infused cells will attack the remaining blasts in an effect that’s called GVT (graft versus tumor). The stem cell transplant did not accomplish this.