Eli has had many interesting conversations with the various health care staff since this journey began. Whether he is instructing the nurses in proper port access procedure, texting riddles to his surgeon, teaching card tricks to the health tech, sending treats and notes to the lab, trying to stump the radiation oncologist, or giving feedback to a nurse about her wig, Eli has engaged in a wide range of interactions with those involved in his treatment.
Last month, Eli started discussing steak with his doctor during one of his outpatient appointments. The topic came up because Eli has developed an appetite for steak and wants to eat it more often than I can afford to feed it to him. His doctor, from Venezuela, gave him instructions for grilling steak, so I took a video of her instructions so we can refer to it later. She also consented to us posting it here.
Since then, Eli finished his last round of Irinotecan, only throwing up the first dose. Now, we are doing his last inpatient chemo, so we will be done with primary treatment tomorrow. We plan to do maintenance chemo next, which has new data to show that it may decrease the likelihood of the cancer returning (the chances of Eli’s cancer returning is somewhere between 30-90% — yes, a large range because his cancer doesn’t fit neatly in one of their boxes from a diagnostic standpoint). Maintenance involves a daily pill and weekly IV meds (3 out of 4 weeks) for about 6 months. We’re not really done, but finishing first line treatment is a huge hurdle.
A few thoughts on statistics: the statistics bothered me back when Eli was first diagnosed. Before they had finished all the imaging and found all his tumors, we were told he had a 5 year prognosis of 70% (likelihood of survival 5 years after diagnosis). That 30% likelihood loomed large in my mind and scared me. Then, after more scans and doctors’ meetings, they reassessed Eli’s risk category, originally Intermediate risk, and decided he was in the High risk category because of the metastatic nature of his cancer (it had spread beyond the local area of his original tumor). With the change in risk category came a much poorer prognosis–30% instead of 70%.
Interestingly, to me, this jolted me into a different perspective that has enabled me to feel more optimistic than I had felt when the prognosis was much better. Whatever happens, it will happen to him 100%. Either he will be cancer free 100% or he won’t.
The other part of the whole statistic thing is the likelihood of Eli actually getting this cancer. The likelihood of his getting Alveolar Rhabdomyosarcoma was 1 in a million. So the odds of not getting it is 999,999 in a million. The odds of not getting it are really great. He, surprisingly enough, beat those odds and got ARMS. So, I figure if he could beat almost impossible odds, he is certainly capable of beating less than impossible odds.
Anyway, the statistics are what they are, but don’t scare me so much as they did. A few more months and we’ll be 1/5 of the way to 5 year, event free survival (yes, I’m going for 5 year survival without relapse, no reason to settle for less).
Finally, we have the next, but not last, set of scans in two weeks, so that is when I plan to post again. In the meantime, please pray for a quick recovery from this last overnight treatment and clear scans. Thank you all for your continued prayers.