Thursday, January 30, 2014

Mommy: Wanting to protect against the cancer and the cure

There's an additional post about the forever MRI from this morning. This post is purely about the call we just received from Cambria's oncologist. The line for stopping treatment was that if the tumor had shrunk 50% or more, we could stop. Well going into today, we were hoping we'd get that 50% success and no more chemo would be needed for our little girl. We thought we were reaching for the stars with that hope, especially with how many gifts we've already been given in this journey. But when it's your child, of COURSE that's what you're wanting. And hey, god says prayer can move mountains... so why not pray for this mountain?

We went in to today with this major anticipation, because we would know one way or the other about the next two rounds of chemotherapy. 

Well Dr. Meany just told us that first, the tumor *is* responding to treatment! AMEN!!!!! Not just that, but she was really pleased with her progress! If you measure the tumor in 2 dimensions, the tumor has not shrunk enough to stop treatment, but it's close (AMEN!). However, if you measure the tumor by volume, it *has* shrunk enough to stop treatment (YAY!!!!!!!!!!!!!!!!!!)  This is great news. Remember, the possibility of stopping at 2 rounds was the distinct minority... like barely worth a mention. In fact, I'm pretty sure that originally, the possibility was only mentioned because we asked why an MRI was a part of the protocol after 2 rounds. Oh, and this "protocol" that I keep referring to is an established treatment plan for intermediate risk neuroblastoma patients that is followed all over the world. this established plan is 8 rounds in total. Cambria is only eligible for the 4 (or possibly 2) round options are because she has a combination of like 5 really favorable markers. This has already been a HUGE answer to prayer!

Thing is, now we have a decision to make. Dr. Meany said her recommendation was to do the next 2 rounds just to make sure. That either course of action is a reasonable treatment plan... but the additional rounds was the more conservative while the stopping was the newer thought process on treating this disease, but not well tested. Part of the hesitation, is that apparently they were unable to process a couple of the histologic and genetic markers from the biopsy. Almost all of them were, and it's why they considered it a very successful biopsy and pathology study... but apparently you don't always get it all. With that little bit of uncertainty, is one of the reasons Dr. Meany suggested going through the additional two rounds to make sure Cambria wouldn't relapse. She also said that the fact that Cambria is handling treatment so well is one of the reasons she recommends pressing on as well. No transfusions, no hospital stays, no prolonged sickness, and she's still growing and developing so well. But how many times do we want to beat those odds? Also, she said that if Cambria hadn't been doing so well, she might be recommending stopping treatment. THAT's how close of a decision this is... 

This is mostly really amazing news... but now Derek and I are at a crossroads. Do we give Cambria 6 more days of chemotherapy (and the weeks of low counts, and days of being sick, and risk of all sorts of long term side effects) but ensure that the cancer is gone for good. Or do we wait and see, and watch the tumor, saving her from the increased risk of infection, pain, sickness, but then watch and worry about a relapse. If we do the chemo, and she's cured we'll always wonder if it was necessary. If we've increased her risk of infertility, heart disease, cognitive impairment, digestive issues, dental issues, other blood disorders, organ damage (the list goes on and on) even if the risk is just increased a little bit... did we expose her to that unnecessarily? However, if we didn't do the chemo and she relapsed, or heaven forbid it spread... how could we ever forgive ourselves?

The only scenario that involves zero second guessing is not doing the next rounds of chemo, and not having her relapse. But what a gamble. 

Either answer makes me feel like a coward, and either answer makes me feel like the most brazen and cocky fool...

This is crazy! I mean, this VERY prestigious, experienced pediatric oncologist (who currently has another pediatric oncologist doing a fellowship under her to study these types of pediatric solid tumor cancers) said she has a "suggestion" but both options are valid. We are not prepared to make this decision!

So tonight we're going to make a small public post, basically asking for folks to pray for discernment and confidence. No advice, no leading questions, just prayer for us during these few days.  We plan to post these in depth entries after we've made our decision. If we're going for the next round, we'll be there on Tuesday. 

1 comment:

  1. just read both of your posts- first thing, as always i am amazed by your faith. Truly. Secondly, I would've supported either decision and all the second guessing is understandable. And I am only posting this because I know you have already made a decision and gone forward- but I 100% know I would've made the same decision you did. How could you not? When you weigh the two what ifs- what if she has a side effect vs what if the cancer relapses or spreads as you stated above, I think your answer was clear. I hope you feel confident in that. Now that the decision has been made.. moving forward I hope you know you made the best possible decision with the best information you had at the time and are able to let go of it. Love you three like crazy.

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