The Nut

It's official. Peanut is no longer a baby. He is a boy.

And he likes all things "boy."

Probably inevitable with the daily big brother influence.

Balls, sticks and rocks are favorites.

As are trucks and cars, or really anything with wheels.

A new questionable skill is gun shooting.

Forks, sticks and spatulas all become "guns,"

complete with pretty decent sound effects.

(The machine gun sound doubles as a motor boat too.)

He runs, and climbs, and jumps.

If he's still, he's probably asleep.

He's such a great kid,

who brings so much to our lives.

(Disclaimer: While he is adorable,

his eyes are not THAT blue.

I am playing and learning with photo editing

and was trying to match the Dodger blue.)

Neuro Surgeon Follow-Up

E. met with the neuro-surgeon today for his six-week post-surgery follow-up. Everything is looking good. E. is healing nicely, although it could take up to six months for all his vision issues to clear up (if they do - which they hopefully will). Like the radiation oncologist already said, E. will have to get another MRI in six to eight weeks. E. will resume physical therapy next week, and add occupational therapy to the mix too. He will continue to take Dilantin (the anti-seizure medication) for three more months. Then, if an EEG shows that he's not having any seizure activity, they will be able to taper him off those meds. Unless something crops up in the meantime, E. won't have to see the neuro-surgeon again for three more months. One less appointment on the calendar is a good thing around here.

Infectious Disease Doc

E. had an appointment with the Infectious Disease Doc today. All his labs (blood counts, chem panels, iron levels, etc.) were normal, so he's been deemed "cured" of his staph infection. The doctor actually said that in the whole scope of infections, E.'s was a "weenie" infection (much better that kind of weenie infection than the other kind of weinie infection, if I do say so myself). Tomorrow marks the final day of the ten days of Daptomycin anti-biotics, and if the peripheral IV "accidentally" comes out on its own after the final IV in the morning, we don't even have to return to the doctor's office. We were warned that sometimes the infection returns in one to three weeks, so we need to be watching for fever, chills, nausea and vomiting. Aside from any of that, the doctor said he hoped to never see us again.

"Bloody Monday"

E. had to go to the Infectious Disease doctor's office today for labs. All the infusion patients have to get blood drawn on Mondays ... so the nurses are busy being vampires on Mondays, drawing blood, blood and more blood, much like an assembly line. Somewhere along the way, they've dubbed Mondays as "Bloody Monday." It was funny to hear patient after patient approach the receptionist's window and say, "I'm here for Bloody Monday."

Since he does not have a PICC line, E. also got a new IV while we were there (I guess peripheral IV's are only good for four days or so). The daily IV infusion of anti-biotics at home is going well and hopefully when the lab work returns tomorrow, we'll find out that his blood still looks nice and clean.

Cyberknife Complete!

E. completed the third and final Cyberknife treatment today. Yay! The people in that office are nothing but nice. We loved them when E. was there a year and a half ago for radiation and were thrilled to see so many familiar faces when we returned this time. We highly recommend these folks for all your radiation needs. Should you happen to have any radiation needs, that is.

Been wondering what the face mask/mold thingie looks like that we've been talking about? Remember, it started out as a flat floppy piece of plastic, which was warmed and molded to E.'s face where it hardened into this shape . . .

For each Cyberknife treatment, his face fit perfectly into the mold to hold him still. He could breathe fine through the plastic netting material and even open his eyes and look around if he wanted. It did keep his chin in an awkward position, tilted up, which I think added a bit more to the pressure on the back of his head. The plastic rim around the sides slid into grooves and there were snaps which locked into place. He wasn't going anywhere. Remember the days of defensive tactics ... where the head goes, the body will follow? Well, if the head isn't going anywhere, neither is the body!

So, he lays on that table, all alone in that room. A huge metal door closes as the radiation folks leave. They then control everything via remote control. The can see and hear everything E. does and they speak to him through the intercom. That big machine you see is the actual Cyberknife. It moves around E. and shoots the radiation where it needs to, based on the intricate mapping they previously did using the CT and the MRI scans. E. says he keeps his eyes shut the whole time but can tell there are bright lights around him.

I won't even pretend that I understand half of what Cyberknife is about. I just hope it's kicking some bad guy ass in E.'s brain, while leaving us the ornery fart we know and love.

Okay, Cyberknife is done. What now? Now, we wait for about eight weeks and then E. goes for another MRI, which hopefully tells us everything was a raging success!

(P.S. My first day of "SASH" ... Saline, Antibiotic, Saline (but no Heparin because of the brain stuff) went off with only minor speed bumps ... and only one call to the infusion nurse.)

Cyberknife #2 Complete

I could have sworn that we were told that Cyberknife would take approximately 45 minutes. Now granted, it supposedly stops when the patient moves and starts up again when they are still. If that's the reason for the delay, E. must be one wiggly fellow because it is taking at least double the estimated time.

Today's Cyberknife session wasn't nearly as painful for E. He said it was still uncomfortable to lay on that back incision but it didn't cause the same pain as yesterday. He also didn't complain of the same splitting headache afterwards. He remarked that at some time during the treatment he could smell something burning. We sarcastically joked that maybe it was his brain.

We met with the radiation oncologist and were finally able to see pictures of E.'s latest MRI. The areas where the two tumors had been looked like gobstoppers with circles of colors all around them. When the Tumor Board was reviewing E.'s case for the possibility of Cyberknife, we had been told that they would be looking at the size of the cavities left behind after the tumors were removed. We knew that the original tumors were too large for Cyberknife, but were told that once they were removed, the cavities would shrink in the healing process. The cavities we saw on that MRI were still BIG! Like really big! The radiation oncologist explained that the cavities fill with fluid and the some of it may eventually be reabsorbed into the brain, but we were left with the impression that they would pretty much remain there forever. On a positive note, there was "nothing new" from the original MRI when E. first went to the emergency room (meaning no new cancer and no new suspicious spots).

When we first discussed Cyberknife, we were told that the typical course of treatment for patients with brain metastases consists of between three and five sessions. Today we found out that E. only needs three treatments. That means that tomorrow will be his third and final Cyberknife treatment. We also discussed the need for steroids or other medications. The radiation oncologist explained that frequently patients have side effects from the radiation or Cyberknife that require steroids and/or other medication. Many of the side effects are the direct result of swelling in the brain ... headaches, dizziness, fatigue, nausea, seizures. If E. can manage to avoid all these side effects, he won't have to take the steroids or any additional medications. We'll be keeping an eye out though, because as is the case with most radiation patients, the side effects are cumulative and usually show up after treatment is all said and done.

As of right now, he's still feeling good. Woohoo!

Trained

I'm trained and ready to go. I now know how to flush an IV. I now know how to give IV anti-biotics. We've got a whole bag of supplies ... tubing, caps, sleeves, alcohol wipes, gloves, 4 X 4's, saline syringes and of course, bags of anti-biotics. Thankfully, I don't actually have to insert the IV needle, but I suppose at this point if I had to learn to do that, I would cowboy up and do that too. E. just has a peripheral IV (no PICC line) and it should last for about four days. He has to go back on Monday for labs, as do all the infusion patients (so they've dubbed it "Bloody Monday") and he'll get a new IV then. He only has 8 to 10 days left of anti-biotics left. We're thinking he got pretty lucky after hearing that most of the infusion patients have IV's for a minimum of 6 weeks. This home IV system is real high-tech too ... we hang the bag from the wall with a push pin/thumb tack. He only gets his IV anti-biotics once a day and they take 30 to 40 minutes to run, so no need to drag an IV pole around for that little bit. This little bump in the road will be over before we know it.