Emmy's Story Archive

I do want to point out how beneficial writing about our story has been for Aja and I. We’re dealing with some pretty heavy stuff that comes with a mountain of information attached to it; to hold all that in your head without release, may in fact cause your head to physically explode.

You may be wondering why we’re traveling all the way across the country to this particular hospital and the answer is that they are one of the few and one of the best in the world treating children with cancer and she deserves nothing less than that.

T-1d...

Aside from our bicycling adventures, we’ve spent the rest of the time meeting with our new care team(s) from the proton and oncology departments. We're going through additional imaging (CT/MRI) so they can see the most recent pictures to determine our absolute best course of action.

where Emmy’s cancer has returned, at the original tumor site, is very close to a number of vital parts, especially her bladder. So close in fact, that another surgery would mean the removal of her bladder completely and then a lifetime of associated complications. Not a road we wish to do down. Protons are allowing us to treat the recurrence without doing to much damage to the surrounding areas. A ultra precise game of millimeters.

...we’ve reached day 17 of 28 on her radiation treatment schedule and it feels good to be ticking off the days until completion. Up until now we haven’t noticed many side effects from the daily proton beams being directed into her tiny, pale body from the giant, hulking 220 ton machine.

Emery was diagnosed when she was just 5 months old and since then it has been a constant rotation of hospitals, doctors, nurses, needles, port access, tubes, anesthesia, scars, blood, chemo drugs, endless car rides and so much puke. It is what she knows which, in itself, is both good and bad.

That brings us to today. No chemo this week (thankfully), just more of a wait and see approach as we monitor her numbers and their anticipated drop. After completing a treatment run this tough she has historically needed multiple rounds of blood products (both blood and platelets) to get her through to the next step. Anticipating this, we have no intention of taking her anywhere far from the hospital.

So whats next? Well, I’ll tell you...next week is currently slated to be her last week of chemotherapy treatment. Five horribly, torturous days with extra shitty (pun intended!) side effects is how we’re going to end this thing. After that, she gets some time to rest (about a month) before we can scan again. That will put us right back where we were almost a year ago.