Monthly Archives: November 2009

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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Treatment Notes

nurse Gina

 

 

 

 

 

 

 

 

A few details about Lucy’s actual radiation:

The last couple of weeks have been a challenge because her time slot moved to later and later in the day, which meant more of her NPO time was awake, until Friday she was the last child, and her appointment was at noon!  On this schedule she sleeps most of the afternoon, stays up late, and isn’t hungry until the middle of the night.  But next week she is back to the first slot; she’ll be much happier getting it over with, and she’ll resume more normal eating and sleeping patterns.  I thought at first that the difficult part was not eating for 6 hours before and not drinking for 3 hours before (and trying to time her DI medicine so she wouldn’t be too thirsty when she was not allowed to drink), but I realized that the emotional weight of the impending challenge made up the larger part of the difficulty for her.  So we are grateful for the next week of early appointments!

Also, the anesthesia team agreed to come in on the Sunday before Thanksgiving to make up for the Veteran’s Day Holiday, insuring (barring technical difficulties) that we’ll be completely done in time for an especially meaningful holiday!

Dr. Marcus, the radiation oncologist overseeing her, says that everything is going well, and that recent evidence on the efficacy of proton therapy in craniopharyngiomas (her tumor) has him considering even shaving a day off her treatment plan.  This would spare more exposure to the optic chiasm, damage to which is her main risk, which would probably appear as loss of peripheral vision down the line somewhere.  And any less radiation also means less risk of secondary malignancy, when healthy tissue exposed to radiation warps into more, unrelated cancer years later. The most recent numbers on this indicate that 20% of pediatric patients treated with traditional radiation experienced this– a concerning number.  The significant reduction in exposure to healthy brain cells with proton radiation, however, corresponds to a reduced risk for secondary malignancy as well as other late effects, for which they are still gathering the numbers. In addition, the placement of the 3 beams used to target her particular tumor leaves basically no risk for cognitive loss.  I’ll end that technical paragraph by saying YAY!

Another important explanation about the tumor itself:  because it is officially benign (only locally invasive and unable to become metastatic), and because radiation continues to have effects for months afterward, when we have the MRI in January the tumor will still be close to its original size.  Radiation only kills cells programmed to divide, and many of her tumor’s cells do not have that capability.  So as necessary as the radiation was to save her sight and eventually her life, there will be no beautiful blank space on post-therapy scan.  Her tumor will likely continue to shrink over time and the odds are excellent that it’s been de-activated from causing trouble again.

All of her caregivers smile when they come in to look at her, from their perspective a straightforward and happy case.

DI dream-- cold water bottles for a quarter!

 

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Baby Therapy

cozy girls

 

 

 

 

 

 

 

My sister Joy and her 3rd child Georgia Caroline came Tuesday.  They were both excellent company,

enhancing playtime,

playtime in RMH room

 

 

 

 

 

 

 

 

going with us to proton,

in the recovery room

 

 

 

 

 

 

 

 

and encouraging us when we were tired.

the day her treatment wasn't till noon

 

 

 

 

 

 

 

 

Georgia’s bright blue eyes charmed all the staff

Steve

 

 

 

 

 

 

 

 

and palpably lightened the mood of many cooing parents and patients in the RMH dining hall and at the treatment facility.

Thanks Harry, Mom, and Gigi (and Will and Sam!) for all your help while they were here!

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Only 12 to go

After a weekend HOME (elaboration redundant) Jax welcomed us back with wonderfully clicheed breezes and balmy sunshine. Our long NPO morning wait passed in tricycling and giggling, Lucy had another eventless treatment & a good nap, there were vegetables in the fridge (golden rarity) and we cozied the evening by with videos of our friends in Swaziland on YouTube…
We are grateful for every loving prayer and thought for us. We feel God’s strength, humor and beauty waiting just as we need them moment by moment– an exercise in living wholly in the present, in itself a gift.

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Green Beans and Yellow Footprints

ChaseThis is Jane Gilbert, a friend from Atlanta, writing on behalf of Lucy not in Atlanta.  We’ll get to her in a minute, but first of all I must tell you about the Ronald McDonald House RESORT…this place is awesome. Once you get past having to wash and glove your hands every time you enter the kitchen and learn NOT to throw up in the public dining room (we’ll also get to that in a moment), it really is amazing.  For instance, the kitchen itself is always open and stocked with treats.  All the chocolate milk you could drink for free!  Then, after a lovely morning walk with Garrick along the river while Lucy and Caroline were at “proton”, I was taking the trash out when I suddenly wondered, “Where does this trash go?”  And then, like the most wonderful answer to my unspoken puzzle, before me were these giant, yellow footprints from the back door all the way to the very position from which you hurl your bag into the dumpster.  Thank you Ronald McDonald!  How can I get some of those for home?  My days would be so much easier.

There is also a playground with tricycles, basketballs and picnic tables in addition to a playroom on every floor and childrens’ books and games everywhere you turn. Jane! They have Bingo Nights and Crafts Night and today Lucy made a beautiful watercolor of flamingos with an art teacher from Bolles Academy here in Jacksonville.  They also have a rescue dog named Anita who Garrick loves to chase around the big island in the kitchen.  Ok, so speaking of Garrick, the day I arrived he had not been given a snack so that he would finally eat a better dinner.  He thoroughly enjoyed this particular dinner which had been brought, like every night, by a kind group of local volunteers.  He kept repeating the word “bean”, delighting in green beans like no other child, until he sucked down the wrong one, or at least one not fully chewed that is.  Without much warning, he began to throw up his entire meal sending panic throughout the room (since many of the residents are in highly vulnerable conditions, any illness is truly a very serious matter).  Though Garrick immediately began to sing and dance, apparently unphased by his sensitive gag reflex, Caroline knew not everyone would immediately appreciate this little party trick of his.  She brilliantly whisked him away and Lucy and I set to cleaning up and by morning, Garrick was well known and also well received back into the dining room for breakfast barring any more green bean eating.Fun together

Today, in one of the many times Lucy just wanted “to sit on the bed and talk”, I asked her where she would like to go on a vacation.  I thought she might say the beach again, or even Swaziland.  She said “proton”!  What?  Sure, she has described it to me as being very fancy (well decorated and shiny) and they have “pizza day” once a week, incredibly affectionate and kind people and chocolate cake every day.  She said that when she gets there, they give her some sleeping medicine which makes her fall asleep pretty quickly, and then she wakes up and the whole thing is really fast!  I’m with her – what’s not to like: napsChecking out the RMH pantry and chocolate cake every day – what more could any of us want?

Her headaches have greatly improved through the week in severity and frequency.  Every small gift she opens from the daily mail delivery is like gold.  Nothing gets tossed down like Christmas gifts when the next one arrives.  She truly relishes the coloring books, stickers and tiny animals…and she wanted to show them all to me when I arrived.  She is very excited about having her port removed for the weekend (she calls it her “buddy” and she gives it drinks at proton) and hopes to go for a swim at the Y while back home in Atlanta.  We will begin our drive immediately after she wakes from anesthesia tomorrow, hopefully with two napping angels in the backseat.  Lucy has made it to the halfway mark!  Hooray!Serving hungry customers at her drive-thruChase

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Ups and Downs

In the RMH courtyard

Lucy’s last few days have involved sleepiness and headaches but also lots of fun with Garrick and our friend Jennifer White (“Potts”), who flew down from NC to help us out.  I have no idea how I would have moved us from Ponte Vedra to the RMH or otherwise gotten through the weekend without her!

Garrick having the time of his life as usual

Twice when we were feeling particularly low, we received a large load of packages and cards that cheered us up.  Thank you all for making us feel loved!

Giggling at the YMCA pool Sunday

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