Very Sad News

Jim wrote the following email last evening. I couldn’t express it better:

David and Mary and I met with Dr. Amir Fathi of Mass General Hospital on Wednesday. David is feeling very well and strong. Unfortunately, that piece of good news is the only good news.

The leukemia cells are back, and likely to grow. There is no treatment known that has much chance of working. In fact, Dr. Fathi said that given David’s history of treatment and relapse, his chances of surviving this leukemia are infinitesimal. The leukemia could be fatal within a couple of months (very roughly speaking) with no further treatment. With treatment, it is possible the leukemia can be controlled for a while. It is also possible that that the side effects of treatment could be bad, or that the treatment could fail to slow the leukemia down at all.

Dr. Fathi reviewed three experimental possible treatments, all of which have some low chance of working for a while. David chose a Phase I clinical trial of cabozantinib. Dr. Fathi himself is conducting this trial. David will begin on Wed Oct 22. He’ll continue to be at home, with frequent outpatient visits. The cabozantinib is taken as a pill.

The way to think about this is that we have the gift of time to be with David for a while longer, especially this next little while when he’s feeling well. I’m focusing on this.

Accepting that David’s time with us could be short does not mean we’ve closed our hearts to the possibility of a miraculous cure. The experience of going through the past seven months with David and this illness makes me feel God’s closeness more, not less. God has his purposes and as a result our lives have purpose. I am more content than I have ever been to trust God with my own life and with David’s life. I am praying for David to be healed and if he is healed I won’t be all that surprised. At the same time, I am slowly getting ready to say good-bye, for now, to my son.

Here’s the email David sent to our families this morning:

            “You should probably sit down again. My doctor concludes that my chances of recovering from leukemia are extremely low. I probably have on the order a few months left to live. I am unsure what to think of this. I definitely haven't been overwhelmed by negative thoughts at this news, which is good.

I love you all

David”

            (Mary here) I went to the temple yesterday, to calm my troubled heart. In the temple ceremony, there is always a prayer for people in especial need. The officiator says a prayer aloud, which is never planned or rehearsed. Although he doesn’t know me, and has no knowledge of my situation, he was inspired to ask Heavenly Father for something I greatly need: strength for me as David’s caregiver. I feel great comfort in his heartfelt prayer.

            And I continue to feel great comfort in the love and prayers you have all offered and continue to offer. Thank you!

Blasts Are Back

            I knew it was going to be bad news when Faye at Cox 1 in Mass General called at 10:45 a.m. to ask if we could come an hour early for another echocardiogram. Back in August, when they discovered the relapse, Dr. Fathi told us that David wasn’t eligible for any clinical trials because of his low heart ejection fraction. (One of the first chemo drugs he was given, daunorubicin, probably damaged his heart.) So, the only reason he would order another test right now would be if the latest round of conventional chemo and the DLI (donor lymphocyte infusion) had not been successful. Well, they weren’t.

            The October 6^th bone marrow biopsy showed 16% blasts.

            So, today, instead of seeing the transplant doctor, Dr. Chen for news about the DLI, we’re back to Dr. Fathi, the cancer doctor. He was very sympathetic when he delivered the news. He outlined the current options, both conventional treatments and clinical trials. He sent us home with two thick packets of description of and consent forms for two possible clinical trials. Jim, David, and I will meet with him on Wednesday to discuss the matter, once the latest EF (heart ejection fraction) is known.

            The good news is that most likely the treatments would be outpatient, requiring two office visits a week, after a 9 hour initial screening. The bad news is that the potential side effects are very serious, and the expected success rate not high.

            Our New England Railroads trip was a complete success. Jim and I thoroughly enjoyed all the interesting people we met and the classic railroads we road, including a dinner train ride in Lincoln, NH and a luncheon aboard the Cape Cod Central Railroad. Both featured delicious meals, white tablecloths, and beautiful fall scenery.

            The greatly anticipated ride along the famous White Mountain Kancamagus Highway did not disappoint. The fall colors were at their peak, the coach ride smooth and relaxing. I felt a bit of anxiety on the Cog Railroad ride up the steep, stark landscape to the summit of Mount Washington, but kept myself entertained on the way down by watching the steel roller between the engine and the passenger car. They aren’t connected at all. The operator explained that we did not want to be pulled downhill by a runaway engine. He expressed great confidence in the car’s braking system, and I decided to marvel at the engineering wonder and enjoy the ride.