I’ve been trying to figure out the best answer to this common, reflexive question, because the answer for the last week or so has been “Not so good” and “please don’t ask”.
Last week we met with the team to discuss the PET/CT and next steps, like how do we make it to the trial when Eli’s cancer is being so aggressive? Will it stay stable enough during the 4 week chemo moratorium required by the trial? We can radiate the 3 main areas, but what to do about all the little spots popping up? Will Car T therapy even make sense when our trial is set to begin June 21st?
The supportive oncology nurse spent much of the time using a metaphor to explain that, in not so many words, no matter what we do, the cancer can’t be stopped. When Eli, who enjoyed the whiteboard metaphor diagramming, commented “this is depressing”, I stepped into the conversation and explained in more than a few words that I agreed with Eli and we didn’t need to talk about death anymore and that I was there to discuss how to get from here to Houston, not the inevitable conclusion of the disease. Among other things, we discussed Eli’s demands for radiation and lack of enthusiasm for more chemo before the moratorium (washout period).
I left that discussion discouraged and depressed, with a little anger and a lot of frustration thrown in. I felt like we were fighting foes rather than working as a team to accomplish common goals. We now had a June 21st trial start date, but it is so far away that it seems like an insurmountable task to keep the cancer quiet long enough for it to do any good.
So, I started looking for other options. I called about another trial I had heard about and wondered if they had openings that we could start now, but they didn’t. Meanwhile, I tried not to cry, but failed at that many times. How can I just watch my kid die when there are still things we can try, but rules and regulations prevent us getting access to those options in the time we need them? I wondered more than once what God has in mind for Eli? What path is there to take when we keep hitting roadblocks and setbacks?
I believe in miracles. We’ve seen them all along this journey, but is the journey now over? Is it time to stop fighting? I just couldn’t feel like we were done.
Yesterday, I set to work on possible solutions to come up with something we can give to Eli systematically that would keep the cancer at bay, but not disqualify him for the trial. I made phone calls and emails, talked to doctors and others to brainstorm solutions. While not working on that, I was taking Eli to Huntsman for radiation. I felt no closer to a solution last night than I was in the morning.
This morning, I set at it again–more emails, more phone calls–in between walking Eli to school since he was feeling up to it today, which has been less and less common. Shortly before I had to pick him up for the last scheduled radiation, I had some good news.
Eli was offered a spot in the other trial I had been investigating in Palo Alto, California. This trial involves a radioiodinated therapeutic and a short stay in a lead lined room. The other good news was that we can use a targeted drug to keep the cancer at bay while waiting for the Car T trial. Now we have options when we had no good options yesterday.
Eli finished the last scheduled radiation of this round and the techs were so kind and shot him with sling shots and showered him with thoughtful gifts.
So, how am I doing? It depends on the week, day, hour, and minute you ask me. But I came up with an answer:
“Not great, but I’m gonna be okay.”