A Better Evening

             With great relief I can report that David sat up and chatted with Aleks White and us this evening. Yesterday he was really sick. He hadn’t eaten all day and couldn’t keep down small sips of Gatorade, or even, ironically, the anti-nausea pill the nurse gave him a half-hour before his evening chemo. But they’ve worked on some IV meds and he looks and feels better. Sleeps a lot and still hasn’t eaten, but he ordered a simple meal while we were there, so he’s still optimistic about food.

Back to Lunder 10, MGH

          At 5:00 p.m. this evening, David was re-admitted to Lunder 10, the oncology inpatient unit at MGH. Around 9 p.m., he started the new round of chemotherapy: high dose cytarabine. Cytarabine is one of the two chemotherapy drugs David had at Walter Reed Medical Center (dearly beloved Wrenmimic). [He will not be receiving daunorubicin, the extremely toxic drug that probably caused his heart damage.]

          For this round, he will receive 2 grams of cytarabine every 12 hours for 6 days: a total of 24 grams. 36 grams is the maximum dose. Dr. Fathi, the oncologist, hopes that the 24 gram dosage will lessen the likelihood of cerebellum damage. The cerebellum is the lower part of the brain, attached to the brain stem. It controls fine motor movement, balance and walking, posture, and motor learning. The medical staff will monitor his motor skills every day.

          David looks better than he has since early April. He’s gained 30 pounds, though still light at 6’1” and 170 lbs. His beard is full and bushy (he’s not allowed to shave, because of the bleeding risk due to low platelets). The beard probably won’t survive the chemo.

          We got back on Saturday, 23 August, from a lovely week at a rental house in Clinton, Connecticut, near the Long Island Sound. Sam flew in from Provo, Utah and he, David, Jim, and I were together all week. R’el visited each weekend, working hard Monday through Friday at her new job as an attending psychiatrist on the Latino unit at Bellevue Hospital in New York City. Peter worked in the Bronx Monday, Wednesday, and Friday; Xiomara worked at Mt. Sinai Monday, Tuesday, and Thursday. They commuted to Clinton, via car or via Metronorth train to New Haven. Annie arrived in Boston on Wednesday evening. She has been a full-time missionary in Taiwan, and we hadn’t seen her for the past 18 months. She’ll be at home until 1 September, when she returns to the University of Wisconsin in Madison for her junior year.

          Wednesday afternoon, David, Jim, and I drove to MGH to learn of David’s latest treatment plan. Sam came along to spend the afternoon with his friend, Kyle. He needed to use the internet at MGH (the Clinton house internet was unreliable), so he came in with us. While we were sitting in the exam room, Dr. Chen, the transplant doctor, dropped by, and was very surprised to see Sam. He arranged for Sam to return on Friday, 22 August, to donate lymphocytes (white blood cells—different from the stem cells he donated for the stem cell transplant 16 June). This involved sitting for about 4 ½ hours while a needle removed his whole blood from a vein. A machine then separated out the lymphocytes and returned the other blood cells back to his bloodstream. They then froze his lymphocytes and plan to infuse them into David’s bloodstream at the nadir, when David’s white blood cell counts hit bottom about a week after the 6 days of cytarabine infusion ends. Hopefully these donor white blood cells from Sam will recognize David’s remaining leukemia cells as foreign and attack them: ‘graft versus leukemia’. Of course, as always, there is the risk of ‘graft versus host’ disease, where the donor cells attack David’s healthy, fast-growing cells of the skin, gut, and liver.

          It’s been a rough transition, from the relief of leukemia remission to this disappointing relapse. The prognosis is not good, but there’s hope that David can achieve a second remission. We appreciate your continued thoughts and prayers. I’m very grateful that David was well enough to enjoy the vacation week with our family. It helps fortify us for the next round.

More Leukemia

            Yes, bad news this week. The bloodwork on Tuesday looked good; the white blood cell count had risen from 2 to 3.7. But Tuesday evening Dr. Chen called: 30% of those white blood cells are “blasts”, that is, leukemic: immature cells that have gone awry.

Today David had an echocardiogram (an ultrasound of the heart). His ejection fraction, the percentage of blood that is ejected from the heart chamber at each heartbeat, is 43%. That’s an improvement from the 36% at the end of May, but not the 58% a man of his age usually has. One of the very toxic chemo drugs David was given, daunorubicin, can cause heart damage. 

            Dr. Amir Fathi, the “leukemia doctor”, (Dr. Chen is the “transplant doctor”.) spent a long time discussing David’s situation with the three of us. It’s very serious that the leukemia has returned. Because of David’s young age, Dr. Fathi is considering aggressive treatments. He will investigate clinical trials and see if David qualifies for any of them. The heart damage may disqualify him. He will also consider conventional treatments: more chemotherapy. 

            Amy, the nurse, took many vials of blood today. They will be analyzed to determine what sort of leukemia we’re dealing with now. Surprising to us, it may not be FLT-3; some other mutation may have taken over. I’ll write more about this when the tests come back.

            Many months ago we rented a vacation house on the Long Island Sound, in Clinton, Connecticut, for our week-long Summer Retreat with our children (and grandchild!). We’ll drive there tomorrow. David can’t be out in public, but he can ride in a car and be with family in the house and yard. We will need to return to MGH for another bone marrow biopsy on Wednesday. That’s also the day Annie returns from Taiwan. She’ll be home for eleven days before returning as a junior to the University of Wisconsin-Madison.

Day Fifty-one

            We saw Jess Driscoll, Dr. Chen’s nurse practitioner, at Mass General yesterday. She was upbeat and optimistic. She decreased the anti-fungal medication, fluconazole. Fluconazole interacts with tacrolimus, the anti-rejection drug, making it more effective. Thus, lowering the dose of fluconazole has the same effect of lessening the tacrolimus. This increases the risk of graft versus host disease. Skin, digestive tract, and liver are the usual organs attacked. There is no sign of skin rash or digestive distress. The liver function labs are normal.

            David’s white blood cell count remains steady at 2.3. (Remember? The reference range that we’re shooting for is 4.5 to 11.)

            We’re halfway through the “quarantine”, no public contact for 100 days. Jared Nielson, David’s home teacher, continues to come each Sunday to give David the sacrament. This week Stanley accompanied him. Stanley was just ordained a priest, having turned sixteen, and blessed the sacrament at church for the first time. It was a happy occasion.

80/20

                      The latest bone marrow biopsy results are good. There is no sign of leukemia. In the bone marrow, 80% of the cells are Sam’s and 20% are David’s. The hope is that David’s blood cells will continue to age and die and Sam’s blood will take over. As I said before, David will have Sam’s blood type. Modern medicine can be amazing.

David is doing well. Patient waiting is the order of the day. So far there is no sign of graft versus host disease, so Sam’s cells apparently aren’t attacking David’s organs. The skin and digestive tract are most at risk.

Jim and I are flying home tomorrow, after a 10 day trip to Fort Benton, Montana (a Hazen/Holms reunion with my 91 year old dad and 80 year old uncle and aunt), Yellowstone (three different days in the park), and Island Park, Idaho (a reunion with Jim’s mom and siblings). Sam, Peter, Xiomara, and 15 month old Andrew were able to attend the Montana festivities, meet a lot of Western relatives, and see the old ranch house, which has been abandoned for several years and is now in the middle of a wheat field. They also attended part of the Johnston reunion and toured Yellowstone.

It’s been a good trip and we are grateful David is doing well enough to be on his own. Thank you to our friends in Massachusetts for visiting him, taking the sacrament on Sundays, and driving him to doctors’ appointments.

And thank you to all our Western family who have expressed their love and support, and have kept us in their prayers.

Day Twenty-four

            David’s checkup on Tuesday, 8 Jul, showed his white blood cell count back down to 1.9 (reference range: 4.5 to 11). Jess Driscoll, the nurse practitioner, said fluctuations are expected. He received an injection of Neupogen (filgrastim), which stimulates the bone marrow to produce white blood cells. It’s the same drug Sam received before the transplant, to increase his stem cell production. We have a supply of syringes pre-filled with Neupogen, which David can use at home, but for this week Dr. Chen judged that one dose will suffice. David’s hematocrit (HCT), the percentage of blood volume that is taken up by red blood cells, has remained fairly steady at about 30. At 208, his platelets (PLT) are in the reference range (150-400). Platelets are blood cells that stop bleeding by forming clots. They have no nucleus and are 1/5 the diameter of red blood cells.

            Jess also performed a bone marrow aspiration and biopsy, David’s fifth. The fourth was pretty rough, but this one went smoothly. His iliac crest (hipbone) is thick and strong, so it takes strength and perseverance to puncture it.

            The initial results of the aspiration and biopsy should be in next Tuesday. They will show whether or not there is leukemia and whether or not Sam’s stem cells are thriving. It’s not expected that his stem cells will have taken over at this point; we just hope it’s moving in that direction. Additional molecular testing will determine whether the mutation, FLT-3, is still present.

Day Sixteen

We saw Dr. Chen yesterday. It was all good news: David’s white blood cell counts are 9.9, well within the reference range of 4.5 to 11. His red cell counts remain a bit low, but steady. Next Tuesday David will see Jess Driscoll, the nurse practitioner, which is a good sign that he is doing well and doesn’t require Dr. Chen’s constant attention. He will have a bone marrow biopsy on Tuesday to determine whether or not the leukemia is in remission and also whether or not the bone marrow is being populated by Sam’s stem cells.

David moves slowly and gets tired easily, but he is able to move around the house, make himself a sandwich, go for short walks, and be home alone. In fact, Dr. Chen advised us to take our two week vacation, which we had planned months ago. On July 17^th we’ll fly to Salt Lake City, drive to Fort Benton, Montana, for a Hazen/Holmes family reunion. (It’s the 80^th birthday and 60^th wedding anniversary of both my Uncle Herb and his wife, Aunt Judy.) My 91 year-old father will attend, along with my sister, Maggie, and her husband, John, and my brother Timothy. A few of our kids will probably attend as well.

Then we’ll spend a few days at Yellowstone National Park and a week in Island Park, Idaho, with Jim’s mom and siblings. We’d love to have David go, but he can’t travel by plane for a few months.