Emmy's Story Archive

In other news, during the last visit to Children's Hospital Colorado where Emmy had a big chemo treatment she was also intubated for a new CT and MRI. This was to take a look at her tumor site checking for regrowth but also to see an image of her chest which is where this particular type of cancer would go next if continuing to spread. We are ecstatic to report that all scans came back clear and the good people on our care team are not seeing any indications of cancer!

A photo collection from early to late February.

They told us right at the beginning of this whole thing, that it would happen. It was said that somewhere along this journey that Emmy would get sick enough to be transported to Denver via ambulance. We've gotten close to the line a few times but have always been able head home from the Vail Valley Medical Center ER without taking it any further. This time, as you might have guessed, was different.

...little Miss Emmy's condition as been improving at a pretty fixed pace. The girl quietly napping in the crib next to us is a completely different girl from the one who was rushed down here in the back of an ambulance a few days ago. Pale, fragile, feverish, and sickly was how she arrived but as of this morning she is most definitely feeling more like herself.

So, next Tuesday we head down to Children's Hospital Colorado for another overnight chemo treatment, only this one is a little different. It is her LAST in this 40+ week course of treatments! After this last big dose of those lifesaving yet horribly caustic drugs, she will get a well deserved break.

Proceeds from this festival will go to the Arkansas River Trust, under GARNA’s non-profit umbrella, and to Emmy’s Friends, which is a grassroots fund established to raise money for Emery Welle, who was diagnosed as a 1-year-old with a rare form of childhood cancer.

Last week found us back on the 7th floor of Children's Hospital Colorado, a floor we've become so familiar with over the last 11 months or so. This time though, was different than all the others.

It's a lot to process. We learned all of this yesterday, today waking up in a fog feeling incredibly hungover from too much unwanted information. This week we have gone from total elation about being at the end of treatment all the way to now where we have been thrust back into a newish and very intense world of aggressive cancer treatment.

Not much to update quite yet. We're headed down for an overnight treatment tomorrow in Denver which marks the beginning of phase 2 in Operation Cancer Free Emmy.

When we last touched base, we had just gone over the proverbial waterfall finding out that her cancer had returned nearby the original tumor site and would require an extensive run of treatment. This new approach will consist of 54 weeks of chemo (2 days a week and 5 days a week, alternating weeks) with the addition of radiation therapy.

I am not the writer in this family, but I am the nurse. I truly love what I do, but now I am realizing the reason why I pursued this profession; to care for my daughter. This is the job I was meant to do, and by far, the most challenging of my life.

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.

Check out who made the Channel 5 News here in Boston!

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.

So proud of this little warrior!!!