Ellie’s First Haircut

Ellie’s Mom took Ellie for her first hair cut since her hair fell out.

“So, this happened last night! First hair cut, other than a trim! The hair stylist commented on how many tangles her hair had (😂😂😂) but then how healthy it is. I did not let her in on the secret that her hair is only 2 years old.”

First haircut First Haircut_2

Ellie’s Treatment: Day 784

This is from a blog that Ellie’s father writes.
On Day 1, Ellie became a cyborg. Part girl, part machine. Her opening day surgical procedure included the placement of a mediport—  affectionately referred to  as “the port”—entirely under the skin in her chest. It’s round, about the size of a quarter with a plastic catheter  that extends from the port to a major vein. It has  a small reservoir compartment covered by a self-sealing silicone bubble that allows it to  be penetrated many, many times, which is helpful, since cancer  patients’ ports are punctured constantly to draw blood and administer  chemo.

I’ve written about Ellie being accessed pretty much every time she went to the clinic or the ER. But what does that mean? Basically, a  nurse cleans the skin  covering the port, pierces the skin and the port with a 90 degree or butterfly needle, and applies a sticker over the  area to anchor the needle and tubing in place.  Before being de-accessed, heparin is pushed in via syringe to prevent clotting in the port or  catheter. It sounds simple, but it’s not a fun process. In Ellie’s case,  the fear and anxiety surrounding it, more than whatever pain she        felt, made it awful.

But as of her most recent clinic appointment, Ellie had no further use for her port. After more than two years of being tied together at the  vein, the conclusion of  her final chemo infusion meant that the time had come for Ellie and her port to go their separate ways. We had  some extra incentive, as the removal of the port  meant we would no longer be bound by the rule requiring us to freak out whenever her  temperature rises above 100.4 degrees. That aspect of the post-cancer  life could start a little early.

Ellie bid her port adieu this morning, but with every rumbling cough that escaped her mouth, the odds of the anesthesiologist rescheduling the surgery rose incrementally due to the complications that can be brought into the mix from having a nasty cold. Just about everyone at the hospital conveyed their skepticism after hearing Ellie cough. But ultimately the anesthesiologist felt that her lungs sounded clear enough to proceed, so that’s what we did.

I escorted Ellie to the operating room, where she crawled from her rolling bed onto a thinner table. The breathing mask that she had decorated with princess stickers was placed over her mouth and nose, and the smell of the sedation gas led Ellie to cry. Chemotherapy has introduced a whole new world of smells and tastes that have thoroughly disgusted her, triggering very audible reactions. It seems she can add this to her list of smells to avoid in the future. She eventually learned to embrace the sleepy medicine used to sedate her during her 18 spinal taps, but that was given through her port without somehow sending signals to her taste buds. I’ve been so used to that drug knocking her out without any sort of complaint from her. But this morning the sight and sound of Ellie sobbing from her discomfort—as if we had deceived or even betrayed her—left me sadder than expected.

An hour later we were retrieved from the surgical center lobby and brought back to the sedation suite. We hope that was the very last time we will ever be forced to sit in a hospital and wait for one of our children to wake up again. I think we’ve had our fill of that. Ellie, too. She had a rough time waking up and getting her bearings, but she might have had an even worse time when she discovered that the prize cart had nothing that remotely interested her. This photo we took of J and her holding up a sign marking the occasion definitely captured how difficult it was for her to be happy in that moment, which I think was truthfully more due to how off she felt than her disappointment over the lack of quality prizes.

The phrase on that poster, “de-ported,” is a clever one that I did not come up with, but it still makes me smile. It’s a positive spin on a term that is usually seen, at least from the perspective of the individual being deported, as a negative. Based on Ellie’s facial expression, you would be forgiven if you really thought that we had just informed her she was being permanently expelled from the country. But this particular deportation was truly a reason to rejoice over. The port with which Ellie had shared so many crummy adventures had moved on. No longer can it be felt under her skin (actually, we likely won’t try that until she’s healed up a bit, but we are taking our surgeon at his word that the port is, indeed, gone).

I had requested that we keep the port after it had been removed and appropriately cleaned, as I had heard that others had done the same. The idea sounded kind of cool. Ellie could store it in a jar in her closet and pull it out occasionally as a reminder of all that had passed through it during a largely unpleasant 26 month season. She could hold it in the palm of her hand and ponder how it helped to facilitate her healing. But her surgeon calmly kneecapped that idea, explaining that while at one time they would have accommodated me, now my request is overruled by concerns over the port’s continued capacity to cause infections, since they cannot clean it extensively enough to make it safe for our weird enjoyment. Oh well.

So with her port out of the picture, Ellie is back to being 100 percent human and 0 percent robot. And we find ourselves able to count her remaining days of chemo on just two hands! Seriously! After today, this girl only has nine days of chemo left, all at home in pill form. It’s the kind of wonderful that makes me want to throw a party and celebrate good times….

deported_3 deported_2 deported




Quite a story

Duane Jackson

This is quite a story.

Mrs. Minger was in New York City and came across a hat vendor.She stopped to buy some hats, for Ellie’s Hats. She explained that she wanted to buy all of the fun hats he had left. You can see them below. The hat vendor asked where she was from and what she was doing with all of the hats. After learning what the hats where for he told her that they were all free, and even added the baseball hats. Duane the hat vendor is the same hat vendor that alerted authorities about the car packed with explosives in Times Square in 2010.