Author Archives: jrpitt

Who’s in charge here?

Giving dad a "finger-stick"

This is Lucy posting today…

My dad has been staying with me in Jacksonville since Tuesday. I sent my mom back to Atlanta to rest and spend some time with Jack and Garrick.

Customized shoes

I have my dad here until Mommy returns on Saturday. He is silly, but is not too bad to have around. For example I was having a hard time explaining to him, that I didn’t like the earth tone brown shoes he picked out at REI recently. He came up with the idea to glue on some Rhinestones. They actually came out pretty well.

This week I am the first person to go into proton in the morning (around 7:15 am). It is nice to have that behind me early each day. It gives me time to get some real food (like a Chick Fil-A biscuit) before local restaurants start serving lunch.

We get home and I put my dad down for a nap.

Today I cleaned up the room while he slept (not kidding) and then did drawings on the ipod Touch until i could get Dad going again.

Daddy down for his nap

I actually had to check his “finger-stick” since he was acting so puny. It was ok, but I told him he would get a “magic band-aid” if he would go ahead and get it over.

I think daddy is having a little challenge keeping pace with my nightly need for juice before I have to stop drinking at 4 am (they call it NPO, but not sure what it stands for).

In short I am doing a lot better.

No more of those troublesome headaches. I am not even that fazed by the daily naps I take during the treatments. I have even mentioned the possibility of staying in Florida for more treatments. Not sure if my parents can handle it though…

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Brave and strong for the treatments

Lucy waking up after treatment

Bobbi and Garrick greet Lucy when she awakens from treatment.

Lucy gives her buddy a drink

Lucy is "giving her buddy a drink", that is flushing saline into her port.

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At the beach

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Life doesn’t often afford such an encouraging change of plans for a Friday. We obviously want to proceed with Lucy’s treatments, but if the machine had to be down, I can’t think of a better way to spend the off day.

We have had an awesome few days at my Alpine friend Jon Lucas’ beach house on Ponte Vedra.  Obviously this guy is my current hero.

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Let’s get this treatment started

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Back home…

Lucy at home We are happy to be back home!!!

Lucy made it through the radiation planning (aka simulation) without any problems.  She did well with the anesthesia and did not even wake up grumpy.  She was quite hungry and was treated to Doritos and Lime jello.

The florida proton center is really nice and well set up for kids, despite 75% of patients are older men there for prostate radiation.

Lucy and Nurse GinaLucy really likes her nurse Gina who has an awesome manner and kept Lucy at ease before and after the procedure.

We will go back to Jacksonville on Oct 13th to start the radiation on the 14th unless plans change.

We will not be making updates until then, except to let you know more about the Ronald McDonald house where we stayed and where we will stay for radiation.

Richard

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Good to have that behind us…

Today Lucy had 2 procedures for the price of one general anesthesia session. She recieved a port (under the skin way to access a central vein) for the sedation she will require while getting radiation later this month. She also received fiducials (under the skin screws) that will help to ensure precise direction of her radiation.

We all fasted after midnight and arrived at 10am to go to the OR at 12. At 1240 they told us they were running late. She finally went at 2pm. Tough waiting for all, but Lucy was very brave. She was helped by a dose of nasty tasting “Happy juice” (versed) that relaxed her and will muddle any memory of the operating room.

She came out of the OR after 2 ½ hours or so and went to recovery. Things went well and we had no complications other than a wobbly daughter when we got home. She is steady now that the drugs have worn off.

We have the simulation for radiation tomorrow where they line up their protons to blast away that bothersome recurrent tumor.

Richard

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Procedure day

Hello all,

Play house at Nemours clinicYesterday we met her local Neuro-oncologist (brain-tumor doctor) at Nemour’s children’s clinic.  It is an amazing >10 story building that overlooks the St Johns river.  Children’s clinics are usually outfitted with all kinds of toys and activities.  Here is a shot of Lucy playing house on the 8th floor overlooking the river.

Today is the day that Lucy goes in for the “fiducials” and her port.  She will go under general anesthesia for these procedures.  They say it will be quite short ~1-2 hours.

She has been NPO (nothing by mouth) since midnight and is a little grumpy, but she did beat me in a game of checkers – hypoglycemic and all.

The fiducials are tiny (3mm) titanium screws that will go underneath the skin and serve as guides for the radiation when they are setting it up.  Dumb-doctor-dad had imagined Frankenstein like screws protruding from her skull.  Nothing like this at all, says her doctor.  She won’t even be able to feel them once the small wounds heal.

We will keep you updated.

richard

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