E1 Radiation has begun

The radiation "dry run" was apparently a success for E1. He got to start radiation today. Radiation takes a whoppin' 10 minutes or so. Of course, the radiation office is on the exact opposite side of town from us, so it takes approximately 45 minutes to drive there. All in all, it's a two-hour adventure. Throw in a yummy breakfast out and our entire morning is booked.

E1 will be getting radiation every weekday (Monday through Friday, excluding holidays) at 9:15 a.m. He has that slot reserved until the end of June, when he'll hopefully have all his radiation sessions complete. That's a tentative date though because if E1 has to miss any sessions due to side effects or anything else, those days get tacked on the end. Reminds me a lot of snow days at school . . . so fun at the time, but not so fun when summer rolls around and you have make-up days cutting into your summer vacation.

Every Thursday, E1 will meet with the doctor after his radiation session. Much like E. did, the weekly check-in allows the doctor to monitor progress, check for side effects and answer questions. A list of potential side effects was reviewed with E1, although they don't typically begin until between the 4th and 5th week of radiation. A few patients experience side effects right from the start and a few patients never experience side effects at all. We're hoping that E1 is in the "no side effects" or "minimal side effects" camp.

No CTs or other tests will be performed to monitor progress. Six weeks after the last radiation session, E1 will return simply to make sure any side effects are dissipating and his activities are returning to normal. Six months after that, he will return again for blood work and that is when his PSA will hopefully be in the normal range, showing that treatment was successful. So, from the way I understand it, we won't really know if everything was successful and E1 is cancer free until February of 2011. Wow, that's a long time. We've just got to be confident all is well.

E1 CT Done

E1 finally got his CT done today. He also got a mold impression done today. From our understanding, E1 was positioned just right for the radiation to zap the cancer and then a mold was made of that exact position. That way, he'll be in the right position for every radiation session.

E1 will return for a doctor appointment on April 27th to finalize the treatment plan and have a "dry run" of the radiation treatment. Hopefully then we'll finally get a radiation schedule.

E1's cancer journey thus far has been frustratingly slow.

Here's his timeline so far . . .

February 19th - biopsy

March 5th - doctor appointment

April 8th - copper targets inserted

April 20th - CT

April 27th - doctor appointment and dry run of radiation

The earliest E1 will begin radiation is April 28th. So, from the point of the biopsy (not even from the point of his first doctor's appointment) to start of treatment will be well over 2 months!

In contrast, E. had his first doctor appointment (simply to complain about difficulty swallowing) on February 9th. A series of tests and appointments followed. He then began radiation and chemotherapy (the Reno treatment plan anyways) and finished it all on April 11th. So, from the point of his first doctor's appointment to the END of treatment was 2 months!

Frustrating!

S.

E1 Update

Things don't always go as scheduled . . .

E1 did get his "copper targets" inserted as scheduled . . . except he got four instead of three. We're not sure exactly what that means.

The scheduled CT didn't work out quite as well. He was there as scheduled, but unfortunately, the machine "broke." "Run some errands and come back in an hour," they said. Errands? No errands to run when you live two hours away. Off to lunch they went. An hour later came the phone call informing them that the machine would not be up and running today and they'd call next week to reschedule his appointment. Nothing like a trip to Reno for, well, nothing.

The call came today at 2:30 pm . . . his appointment was rescheduled for today at 3:30 pm. Did I mention he lives two hours away? "Oh, I guess we can reschedule for tomorrow then."

So, E1 is traveling back to Reno tomorrow and hopefully he'll get his CT scan and all that goes along with it. Then maybe, just maybe, we can get his radiation schedule and get things moving.

Oh and remember how it was anticipated that he'd have to live in Reno for the nine weeks of radiation? Well, at the last appointment, the doctor mentioned FOURTEEN weeks rather than nine. There are apparently 44 sessions of radiation . . . I think we erroneously assumed that he would be receiving radiation five days a week; hence the 9 weeks total. Quite possibly, he will be receiving radiation only three days a week, which could stretch things out even past fourteen weeks. We'll let you know as we know.

Back at Work

E. was able to return to work part-time yesterday. He's cleared to work part-time, so long as he's feeling up to it. Two days down and so far so good. I'm hoping he can continue to surround himself with positivity and not let any stress creep in.

On a selfish note, after having him constantly around for the last 14 months, I miss him.

S.

First Haircut

Peanut gets compliments all the time.

On how cute SHE is.

On what a great smile SHE has.

On HER cheerful personality.

Seriously, about 80% of the time, people think HE is a girl.

Clothing choice doesn't seem to matter.

Navy blue, dump trucks, dinosaurs, camouflage,

baseballs, footballs, soccer balls . . .

"SHE is so cute!"

We figured maybe it was time for a haircut.

That wispy baby hair is so darn cute though.

We made an appointment with Bobbie,

a beautician family friend

(who also most likely gave the two girls

their first haircuts ... how cool is that?).

The scheduled day came way too quick.

Peanut didn't seem to mind though.

He sat in daddy's lap

and only tried to grab at the scissors

when he heard them close to his ears

or tickling the back of his neck.

There were no screams and no tears.

And the end result?

A handsome BOY!

One question though . . .

how did one little haircut

transform our precious Peanut

from a baby to a toddler???

S.

Biopsies Clean

E. received a call from the Physician's Assistant at MD Anderson this afternoon. The results of his biopsies came back and they are all CLEAN. Everything looks good!

N.E.D.!!!

N. E. D.

Three simple little letters that mean so much.

No Evidence of Disease!

E. and I both came to Texas with good feelings. I was confident the news would be good. Yet, I had that little nagging of self-doubt in the back of my head. What if the news was bad? Would it be that much worse since I had convinced myself it was going to be good? Thankfully, I don't have to worry about that right now. It is all good.

E. had his labs on Sunday, his PET/CT scan on Monday and his Endoscopic Ultrasound on Tuesday. Today, we met with the doctor to go over the results.

• Labs

Look good. Everything was well within the normal limits. Matter of fact, E.'s blood sugar was the best it has been in a long time.

• Endoscopic Ultrasound

One little hiccup in the test was that E. still had undigested food in his stomach. He was given instructions not to eat for six hours prior to the procedure, but we knew that last time, six hours wasn't enough. Therefore, E. didn't have anything by mouth for twelve hours prior to the procedure and his last meal was easily digested Chinese food. It obviously still wasn't sufficient. Aside from the food blocking part of the view of the stomach, everything looked good. It was a completely NORMAL EGD (Esophagogastroduodenoscopy . . . say that three times). Multiple biopsies were taken as part of the procedure, but those results won't be available for a few more days, or possibly a week.

• PET/CT Scan

Nothing "lit up" on the scans. No pesky little glowing areas. According to the report, "There are no sites of abnormal radiotracer uptake along the length of the esophagus to suggest recurrent or metastatic esophageal carcinoma." Basically, E.'s cancer hasn't come back in the esophagus and it hasn't spread to other areas. You can't ask for anything better than that!

What now?

Right now, we're still in the "wait and see" mode. As you may recall, the surgeon had originally said that if E. could maintain a "period of stability" for approximately six months, he would offer him surgery. That is still the current plan. We will return for another PET/CT scan in 3 to 4 months and if E. is still N.E.D. at that time, it sounds like surgery would be offered.

Dr. M. explained that if E. continues to have no evidence of disease, he will have two options: 1. surgery or 2. "watch and see." The doctor stated that surgery offered to a Stage IV patient is really "outside of the box" as most surgeons and hospitals would never offer it. Timing is important, especially for Stage IV patients, he explained. If a patient has the surgery only to have metastatic cancer months later, the surgery was really a waste of time and effort. Yet, he also stated that he has never regretted performing surgery on a Stage IV patient when the right circumstances presented themselves. He seemed optimistic that E. was going to present "the right circumstances."

Surgery is not for everyone though. It is a MAJOR surgery that has lifelong implications. Quality of life can be affected. Dr. M. stated that it really is an individual decision. Without surgery, in all likelihood, the cancer would come back. But with surgery, the cancer could come back anyway. As Dr. M. said, we'll all think about it and cross that bridge when we get there.

In the meantime, continue loving and living life.

Which we fully intend on doing!

S.