You can tell a lot about someone by looking into their eyes.
Maybe it’s the post holiday break rush, but the five elevators at the clinic were packed every time we rode in them for Sam’s tests and appointments this week. Elderly couples, parents with kids in strollers, middle-aged men traveling alone with briefcases, and Sam and I. We all cram in. We’re all headed to appointments to be diagnosed, treated, evaluated, and infused. Our demeanor varies, but our eyes are all the same. None of us want to be here. To acknowledge another person is to say with your eyes, “I’m sorry you’re here too.” Because of the clinic’s stringent policies on interactions with patients who have any virus, as Sam does, Dr. Storb and the transplant nurse Cindy were dressed in yellow gowns, gloves and masks complete with plastic eye shields to talk with us about the transplant yesterday. Literally, all we could see during our meeting were their eyes and the tops of their heads. Sam and I knew this meeting wouldn’t be any fun. Learning about the transplant process even in the abstract is pretty nerve-wracking. Assuming the tests Sam is undergoing now conclude it’s “all systems go,” they’d start the process by the end of the month. They would give Sam six days of chemotherapy and two days of radiation to completely knock back his existing immune system again, which is now his Dad’s (because he was the donor for Sam’s last transplant). Once Sam’s current immune system is back down to nothing, they’d transfuse the stem cells from two, currently frozen umbilical cords, which are set aside just for him. The hope is then the two new potential immune systems will fight it out within his body and the stronger one will take over and become his new immune system, and fight off any leukemia that tries to come back as the rest of his cells regenerate. Going into the meeting, we knew Sam will need to still be in remission when they are ready to move forward with the transplant in about three weeks. We knew his body needs to heal from his (non-leukemic) current ailments, as well as pass all the tests they’re doing to determine if his organs can handle the stress of transplant. This would all be a feat in and of itself. In our meeting, Doctor Storb continued with what else needs to happen for this transplant to be a success. First, he questioned whether Sam would still be in remission, and therefore eligible at all by the time he’s ready to get going. If he is, the toxicity of all the chemo will threaten his already-damaged organs even if he passes the tests this week and he’s concerned it will be too much given Sam’s recent troubles with is kidneys and liver. He is at high risk of serious graph versus host disease again because of how badly he’s had it in the past – he’s still dealing with it today. The ‘no immune system’ time period will be really dangerous. It’s when Sam would be susceptible to a whole host of infections, like before. With a cord blood transplants, however, this dangerous time period lasts longer because the cords are from an infant who has not yet built any immunity to share. If he survives all this, there is still only a low chance the new immune system will be able to defeat Sam’s extremely aggressive form of AML, which due to a “chromosome 7 deletion,” is one of the nastiest. Whatever that means. Dr. Storb paused after explaining all this. We saw his mask suck in as he took a deep breath, and his eyes softened. “I’m sorry I don’t have better news for you,” he said. “But unfortunately this all means that the chance of success is extremely low.” He guessed Sam’s chance of survival is around 5%. He called the idea of a transplant “a real Hail Mary” at this point. He said he would ask another AML specialist to review other potential treatment options, including any at other institutions that might offer better chances for Sam. After Nurse Cindy and Dr. Storb left the room, Sam and I sat there quietly. We were a little stunned, but not as much you’d expect. We’ve stared into many saddened, softened eyes to have similarly hard conversations with a number of skeptical doctors now who are afraid of attempting the transplant that might, “shorten Sam’s life.” We knew it was risky, but it’s clear that Doctor Storb doesn’t want to do this transplant. It is, admittedly, a little more serious to hear it coming from the guy who is supposed to do the job. We know that doctors don’t have crystal balls, that 5% doesn’t matter and that there is some chance it will work. But it doesn’t get easier to hear. After all, we came to Seattle thinking the chances were greater. After that meeting, Sam went to the infusion center to get a platelet transfusion. I cried in the bathroom about 5%. It’s hard to put a number that small out of your head, and it’s hard not to feel frustrated about packed clinics and sad doctors and endless appointments and not just spend all your energy hating cancer for a few minutes after something like that. Which is what I did. The good thing is, there’s never any shame in walking through the clinic with puffy, red eyes after crying in the bathroom. As I walked, I saw all these people filling the clinic, believing in the doctors. I knew then that if Sam is eligible to move forward, I’ll believe in the sad-eyed doctors, and I’ll remember that the appointments aren’t endless. I’ll know that if we continue down this road, we’re doing so because we have to believe it will work. (Why else even try?) Still, while I know that it’s important to be hopeful, I also know that we need to grapple with reality. It’s not fair to Sam if those he loves have our heads in the clouds about what he’s dealing with while he is left to face the facts alone. It is certainly hard to balance the two. In the car on the way back to the apartment after his infusion, the salty, dried tears on my cheeks strained my smile as Sam looked at me and goofily sang Don McLean’s, American Pie, which had come on the radio. All these tests and decisions and treatments were done, and singing silly songs on the radio is more important than ever. It was the best look of the day.
Dick Lamers
1/5/2017 05:31:38 pm
Drove my Chevy to the levy 1/6/2017 05:32:10 am
We send our love and prayers to you Sam and Jenny to have the strength to battle the cancer and to heal, and to love and to do the work which is important to you, Alaska and all of us. we think of you often.
marilyn tucker
1/6/2017 07:08:30 am
I believe in MIRACLES - AND know the two of you do too - and we are all sending prayers that God cannot ignore
Cindy
1/6/2017 09:48:23 am
I believe any percentage is worthy of hope! I had a 3% chance of having children and I now have 2. Sending tons of positive thoughts and hope your way.
Casie Budolfson
1/6/2017 09:12:32 pm
I'm so sorry that you and Sam are having to go through this at a much too young age. I know I can't say anything to ease the pain but please know you are in my thoughts and prayers.
Harvey and Robon
1/7/2017 03:45:06 pm
If you want a little relief time while Sam is in a treatment of something...just holler. We can be anywhere in minutes I would think. Hang in there, 5% is enough, even 1% would be enough-only positive thoughts f$*k Cancer!
Susan and Randy Booton
1/11/2017 06:04:58 pm
Sam and Jenny, continuing to send positive thoughts your way and pray for some more answers and information to come your way. Looking forward to the #31forSam this weekend!!
Bev
1/13/2017 02:05:11 pm
Hang in there. Everyone is pulling and praying for you. Much love ❤🙏 Comments are closed.
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