Monthly Archives: October 2009

Dressed up proton

Lucy had a hard day, starting last night with a headache that lasted until this afternoon. I think her body is feeling the effects of 6 consecutive days of anesthesia and radiation. The beam was delayed this morning so she had to wait a bit, but the festive staff did their best to entertain her. When she woke up, she did not feel sassy enough to wear the feathered tiara she brought, but she and Garrick trick-or-treated around the building to some cowgirl technicians, among others. Most of the staff not in costume wore Florida gear in honor of the Fla/Ga game tomorrow.

Both kids, having been in Africa the last 2 years, thought the whole thing really strange, but were thrilled that these people dumped handfuls of candy into their bags and then offered cupcakes and cookies.

We are so grateful for the weekend now! We will likely not do much but visit the park across the street, which has a tireswing Lucy loves !

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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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Another good day

We miss Jack and Richard, but Bobbi came with us this morning to “Proton” as we are calling it, then watched her dance class this afternoon.

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Good start to the week

Lucy & Nurse GinaLucy’s treatment yesterday was hard on her, but she felt much better today; she said it was because Bobbi (my mother) was here!  Here is a picture of her with her wonderful nurse Gina.  You can see the crafts and toys in the room.

Since we had not yet picked up Mom from the airport, we brought “Pumpkin Pie” along to the appointment.  Garrick turned on his early morning charm and then made himself useful pushing buttons, opening doors, escaping down the hall at a trot with a huge grin on his face, and reorganizing cabinets.  When Lucy woke up he went like a 10 year old to fetch her a package of crackers.  He walked back over to her bed, handed them up to her, and then looked at me and said “juice!”

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At the beach

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Click this photo to see more.

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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Unpredictable as Billed

Lucy’s headaches have been under control since Monday, and though she has been exhausted, she’s been cheerful and playful. Thank you for all of your prayers for her. Your cards and other treats encourage her. She is more aware this time around of all the people loving her.

This week she started to dread being wheeled back and put to sleep, even though I was holding her hand. She would cry when she saw all techs gather around smiling, and would fight the sleepiness. So yesterday they let me carry her back so that she fell asleep in my arms, and they said she could do this every time if we wanted to. This is a relief to both of us.

She took her first ballet class Tuesday evening, which thoroughly wore her out, but it is the perfect weekly activity and we are so grateful for this informal class letting her join for the month. She is a little athlete; I loved watching her focus and execute with precise form after general anesthesia that morning, among her other limitations!

Wednesday we checked into a beach house about 30 minutes away graciously loaned to us by friends, and Richard drove down with Jack and Garrick. Jack has been well taken care of by our community in Atlanta, and Garrick had a ball with Bobbi and G. We are all so glad to be together, bickering and all!

As Richard and Lucy sat down in the waiting room this morning at 7 for treatment, they received the news that the proton beam was down again for 2 days, similar to last week. Apparently this is very rare, but one of the techs told us he was surprised this didn’t happen more often, because it is such a precise instrument, with so many things that have to be lined up perfectly in order for it to operate properly.

So this means Lucy has a bonus time without treatment, and they will start again on Sunday the 25th. This also means we are not sure when we will be done here, if these hitches keep coming. But we are grateful for an unexpected break from anesthesia, and she will get her needle out tomorrow so she can swim this weekend. Ponte Vedra wind, cold froth, and crushed shells underfoot… hard to feel self-pity!

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Rough start to the week

We had another quiet day yesterday, but by the late afternoon the headaches that had reappeared last week worsened. This morning she was still in pain and threw up. Though she kept her medicine down after that, she had to be intubated during the treatment today for precautionary reasons (they rigged it temporarily so that her mask would still fit). Everything went well, but when she came out she was still not herself, so the radiation oncologist stopped by to see her. I felt much better after his consultation. He reassured us that the headaches are a result of the expected swelling the beam induces, and that when headaches start early in treatment like this they usually resolve within a week. Staying on top of the pain with motrin made for a fun rest of the day, including baby dolls and tea in the playroom and tag around the playground.

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