Well, to say it's been a stressful week seems like a laughable understatement. We were completely unprepared for the information we learned in our second opinion appointment on Wednesday (i.e., that Eila's condition is rare; that instead of good odds, children with Eila's condition have less than a 50% survival rate; and that, we should consider a much more aggressive treatment plan). This really spurred us into action.
Although our team of doctors had already told us that Eila had metachronous bilateral Wilms' tumor, they hadn't presented it as much different than last year. When we learned just how different things have become, we honestly felt a little neglected, and we were concerned that Eila may not be getting thoughtful care she needs. It was disconcerting to wonder whether Eila's DCH oncologists understood the rarity and severity of Eila's condition, and it forced us to ask whether we're making the right decisions for her. It hasn't helped matters that the two physicians who treated Eila last year (both of whom we adore) are on leave, and we've felt like the "substitute" doctors are just getting us by until we're not their responsibility any more.
We started reading as many articles as we could find on metachonous bilateral Wilms' tumor. Unfortunately, there aren't many, and most are rather old already. We came up with a new set of questions and started trying to find out who was in the best position to get us useful answers. We reached out to our doctors at DCH and contacted a few other oncologists across the country.
Today I had a chance to speak with Eila's current doctor about our concerns. I found out she has contacted two leading researchers in Wilms' tumor studies and is waiting for their advice. Hopefully these experts will be able to provide our doctors at DCH new insights from their more recent (and unpublished) experiences with patients similar to Eila. So we don't exactly have answers yet and it's still all so very scary, but now we're doing a better job of communicating and we feel like we're moving in the right direction.
2 comments:
Wow, I read both Wednesday's and Friday's blogs. What a tough week and such news. I can see how you would be filled with doubts and questions. I commend you for not letting that stop you from delving deeper into the matter. That can be a help. Also, it was also good that you recognized that the materials you looked up were dated. I am always cautious about anything on the web until I verify it with a trusted source. That's a good consideration for other sources of information as well. Our prayers continue: Psalm 121 asks the question, "From where will my help come?" The answer is in the very next phrase, "My help comes from the Lord, the maker of heaven and earth." May God give your strength for the news of these days, and wisdom as you make tough decisions ahead. Thanks for the update.
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